Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> My Son's Story http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1301903487 Message started by judy on 04/03/11 at 20:51:27

Title: My Son's Story Post by judy on 04/03/11 at 20:51:27 Thanks for this wonderful site. Below is Jarrod’s story. I will try to cut it short. My son Jarrod 12 has a long history of health problems that have only got worse. At the moment this is still undiagnosed. He has had numerous symptoms over the years that include: •        Extreme pallor •         Malaise •         Listless, Fatigue (Can’t sleep) •         Abdominal pain, diarrhea, vomiting, distended stomach, terrible stomach spasms, cramps etc.(doubled over in pain sometimes),bloating •         Sleeping problems (worse when he is sick) •         Giddiness •         Hives, rashes, bruises, wheals, petechial  bruising (have got some photos) •         Fast heart rate •         Bronchitis •         Conjunctivitis •         Ear infections •         Dry honking cough that doesn’t respond to anything •         Tonsillitis (were taken out November 05) •         Anaphylaxis  to a degree- so far responds to water or asthma puffer •         Headaches that we believe are cluster headaches and are treating them as such. They can come with blackouts and seizures. •         Heartburn •         Pain in back that moves around to the side, pain in legs from knees up •         Skin lesions that resemble burns and one that looked like a skin ulcer (very nasty, painful and sore to touch) •         Mouth ulcers •         Scrunching his eyes •         Constant throat clearing •         Balance problems and sometimes can’t control the left leg  (gets worse when he gets sick) •         Scars on his skin •         Nose inflammation       •         Dark circles under the eyes •      Severe eczema (grew out of about the age of 6⅟2 ) •      Sore throat There are probably some I’ve forgotten. These have always been put down as viruses, sinus and allergies. His health only got worse when he started school in 2005. In 2007 the headaches began and we really started to put patterns to these attacks. They always seem to last for 5 or 10 days. Mostly 10 days which we always thought was something to do with histamine. Also during an attack he can react to something else and set off another 10 days. Pollen, wind, heat, dust, plants, trees and smoke are some of his triggers. From May until the end of the year is the worst, our winter and spring. We are in Australia. He has been hospitalised a couple of times for these headaches. The last time being September 09 .We felt that this sickness was not fully investigated at the time and the paediatrician was fixated on stress anxious etc. We were sent to the psychiatrist who diagnosed somatization (stress shown as physical symptoms. )We never truly believed this at all which leads me to my research, we then found mastocytosis and I have to believe it fits perfectly. No one is interested so we are battling away ourselves trying to put the pieces of the puzzle together. We have seen numerous doctors and paediatricians. He has had the following tests. Tryptase which was normal but might not have been done at the right time. (still trying) Very high IgE 24 hr urine 5HIAA which was one below normal Blood 5HIAA which was normal 24 hr urine N methyl histamine which very elevated 3.1 (should be up to 1.5) We have had blood tests. They have showed high liver enzymes in 07 and in 08 high basopils and mild thrombocytosis. We have also had 2 skin prick tests with significantly different results His medications have included a H1 and H2 antihistamine and mast cell stabilizer and singulair. Nothing seemed to be successful. The only success we have had is with beta-blockers which have done wonders for the headaches; they have even got him a bit better in between attacks with putting more colour in his cheeks, more happier and helps with balance and walking. At the moment the beta blockers is all he is on. He has missed a lot of school over the years. In between attacks he lives with more and more symptoms.  He does not compete in sport at school much as he hasn’t got the energy. As his mother I am very worried and it is so heartbreaking to see him like this and feel so helpless. I am also extremely angry and frustrated about the lack of care and support. Please if anybody has any ideas or questions. Thanks          Judy

Title: Re: My Son's Story Post by Riverwn on 04/04/11 at 06:29:43 Hi Judy! You are such a wonderful mother to have done all you have so far and investigated all of these conditions. Jarrod certainly needs an expert in mast cell disorders to put all of this together and give you a definite answer. In Melbourne there is apparently a very good doctor who has seen multiple patients with mast cell disorders. He is: Dr.Karl Bleasel e-mail Karl.Bleasel@mh.org.au Tammy Allen Secretary The Department of Clinical Immunology & Allergy / The Royal Melbourne Hospital/ Phone: 9342 7191 /Fax: 9349 3199/ tammy.allen@mh.org.au/ (with thanks to Nancy Gould) That beta blocker concerns me greatly--it can initiate an attack--it causes mast cells to degrade. IF there is a hypertensive element to Jarrods case (high blood pressure) it would be much safer to try Cardizem (it is a calcium channel blocker that also makes that fast heart rate better).  If he is given it only for headaches (that would be normal for most people with migraines)... then think about using an antihistamine instead. Now you MUST talk this over with his doctor...if he agrees with any of this, beta blockers CANNOT be stopped cold turkey, they must be tapered off very slowly. The first thing you need to do is get Jarrod to a real expert in mast cells. Once you have a definitive diagosis, you can make a battle plan for his care. Until then, keep a diary of the meds he takes/what he eats/how he feels every day. It could help you and the DR too to see exactly what he reacts to. Also go look up LOW HISTAMINE DIET and keep him on that until you get an answer. You and Jarrod are NOT alone anymore, youre here with us and we WILL help! Hugs to you Hon, Ramona

Title: Re: My Son's Story Post by judy on 04/05/11 at 01:03:34 Hi Ramona, Thanks for your reply. You are right, I feel we do need a mast cell specialist. Only problem we have is the Royal Melbourne and the Alfred hospitals do not see children. Getting a diagnosis is just as challenging as the illness. I understand your concern about the beta blockers but we all can see a difference with them.They were initially for the headaches but we have found they make him more brighter/bubblier, more color in his cheeks, improved his balance and walking and has reduced his number of attacks. We have tried H1 and H2 antihistamines, mast cell stabilizer and singulair. They have not worked in the past but he may  not have been on the right doses as we have not got a peadatrician or specialist.We always believed the headaches were secondary to some kind of allergy histamine etc. Is there any other kind of disorder you think we may be looking at here,considering his Urine N methylhistamine was very high. It was  3.1 (range 0.0-1.5) Thanks for caring. We have felt very alone, glad to have your support Judy

Title: Re: My Son's Story Post by ruth on 04/05/11 at 02:36:04 Hi Judy, just wanted to say welcome and I am glad you have found this place to find some support and understanding.  I empathise with you, I am also trying to get to the bottom of my sons symptoms, although his are not quite as disruptive to his life as in your case.  But I understand the frustration of having to battle to be heard and get the attention that your child needs, and to be left in the 'too hard basket'.  It's unfortunate that the Alfred won't see children, but maybe it would be a good resource for your sons doctor if he is prepared to look for direction from a specialist who knows about mast cells disorders (there is a post about the Alfred in the Doctors topic).  Have you seen an immunologist or allergist in your rounds of specialists? Have you been to The Royal Children's Hospital? Even just finding one doctor, who may not know enough about about mast cell disorders, but who takes your concerns seriously enough to persist in finding the right specialist, will help you get to the answers eventually.  Hang in there, you will get there, it's just really hard to accept the time and battles it takes when your child is suffering.   It would be really interesting to see if you find any relief from a low histamine diet. Even if allergies and histamine are not the whole story, or even the primary problem, at least minimising this source of triggers might help a little. Good luck,  there is some great support and advice available to you here, hopefully that can make the difference as you navigate the challenge of finding a diagnosis. Ruth

Title: Re: My Son's Story Post by Josie on 04/05/11 at 06:46:06 Hi Judy ;-) I feel for you , you are doing an amazing job . You've done amazingly well getting these tests so far ;-) I understand this department do not see children . But they may be worth a ring as they may have a peaditrician they will work with ;-) I am with Ramona on the beta blockers . I will suggest alternative approaches in a mo . beta blockers are a concern because of the reason remoan said and because they block the benifits of EPI PENs . In fact they work on the opposite receptors and make the situation work . lowering pulse and blood pressure . There are 2 receptors - Alpha and beta . Beta are blocked by the drugs , but it is these receptors which need stimulating to make you / me better in an anaphylaxis . So they can stimulate an attack AND stop you treating it in a life threatening situation . You say you are treating Jarrods headaches as cluster headaches . has he seen a neurologist as headaches should be investigated . Regards Jarods headaches , the fact beta blockers have worked suggests high blood pressure . There is a form of mast cell with high blood pressure . The body also does this is early shock . The important other test is , for a pheaocyocythoma . These present with headaches and other symptoms . There is a 24 hour urine collection for cateclamines - epinepherine and nor epinepherine , which tests for this . This can be done by an endocrinologist . I hope you find a mast cell specialist as Ramona said , they are the ones to make the necessary decisions . Because mast cell disease is seen as rare ( it seems wholly under diagnosed so may not be as rare as its felt to be ) the doctors who truly understand it are also rare . A specialist doc is necessary because mast cell behaves like a syndrome , we have it but are all slightly different in our presentation . We have similarities but no 2 of us are the same . One example ( of many ) is that i can tolerate aspartamine but Ramona can't . I feel you have moved on from antihistamines , but you son has high histamine , so regardless of the exact diagnosis , he is having symptoms from it . I think he was under medicated before and that is why he didn't get better with them . i was the same . I have now reached a level that my symptoms are much better controlled . I know the gastrocrom didn't work . With this I would say it takes about 6 weeks of dosing at the right dose for gastrocrom to work ( some people less but this is the norm ) . I imagine Jarrod also felt sick as that is a side effect . What medications did you try for Jarrod ? I feel the pediatricians decision that jarrods problems were somatic in origin has set the progress of jarrods symptom investigation back somewhat . I have been here . My doctors could not find the cause of my illness ,so referred my to psychiatry, the psychiatrist found nothing . I was stressed with being ill and having anew job to start which i couldn't begin until i got better and I had had to put off a visit with my children due to me being in hospital . Despite this my symptoms were label due to anxiety . HMMMMM . I didn't agree . They said i had got anxious on another Ward the week before . I had got upset as I had been denied anti sickness for 2 hours . None the less it was all blamed on anxiety . That was summer 08 All my symptoms now have other explanation with idiopathic angiodeama ( swelling ) and diabetes . I am still under investigation . I moved towns to ensure I got the care I needed . My GP didn't think it was anxiety , so referred me on , but it has taken me a long of time to get to the right doctors . I have no psychiatric problems at all . My illness is physical . Coping with all this is hard , I have had counselling to help me be myself in a new situation . You have the evedence on paper that your sons problems are not somatic . We do find doctors who are working with something they do not know , are prone to diagnose somatic conditions and essentially BE WRONG Mast cell disease is mentioned in 3 sentences in my medical test book - I am a nurse I bought it for essays and for sussing complex patients as I always assumed physical causes of illness even psychiatric as they are due to imbalances in blood chemicals . So mast cell diagnosis , is a job for mast cell specialists ( this includes mastocytosis and other mast cell condtions ) ;-) many hugs Josie

Title: Re: My Son's Story Post by judy on 04/06/11 at 23:12:24 Hi Josie and Ruth,                         Sorry I havent checked in for a while. The childrens hospital is where the bad experience with the anxious stress etc happened, so we are not very happy to go back there in a hurry, If you know what I mean. Yes I've read a lot about other people with similar circumstances I agree I think that  did set us back heaps including his health.I feel so helpless ,I so desperately want a diagnosis so we could all just move on and find the right medications to help him. I agree too that we were probably on too lower doses of antihistamines as we have no specialist. Yes I have now got written proof that something is going on. We have always said that it was something histamine and for some reason his body produces too much histamine. I felt they were not listening to me. Anyway its so good to have you here for support thanks Judy.

Title: Re: My Son's Story Post by Josie on 04/07/11 at 03:11:12 Hi Judy , I understand your frustrations . I can also see why you don't want to go back to a consultant who took that line . I finally got an apology out of my , its all anxiety , consultant . I keep it on my email to give me a pick up when i have had enough . The clinic Ramona mentioned may know a pead who would be worth visiting . On the mastocytosis website there is a lady celled Nancy Gould . She is in New Zealand , she may know of a peadiatric team who will work with the adult team . She is very knowledgeable and has worked with the top american masto speclaist doctors . We have another lady on here , whos daughter is ill with what looks like mast cell disease . She is having support from Nancy . I will highlight you to her as she may have some options to try . I remain very concerned about the beta blocker , as if Jarrod shocks , they will not be able to use the typical , to hand treatment on him . On here any personal emails are shard in private messages ;-) I hope this helps and jarrod is ok today ;-) Josie

Title: Re: My Son's Story Post by Adele on 04/08/11 at 01:52:19 Hi Judy!  I didn't realise until now you were a fellow Aussie (thanks Josie for letting me know).   The story of my daughter is here in the introduction area.   You are doing a fabulous job!  I may have missed it but where in Australia are you located?  We are in Brisbane.   I look forward to keeping in touch with you.   A

Title: Re: My Son's Story Post by Riverwn on 04/08/11 at 05:40:54 Adele, could you possibly give a suggestion as to who  in pediatricians are expert in masto for Brisbane?? I think that would help loads :) Thank you so much!! Hugs Ramona

Title: Re: My Son's Story Post by judy on 04/08/11 at 23:00:12 Hi,    Thanks so much Josie and Ramona. Hi Adele,             So glad to hear from you,Iv'e been meaning to make contact. So sorry to hear about your daughter, How is she doing now. Jarrod is been doing quite well lately except the everyday symptoms that he lives with.He has been to school 7 weeks out of 9. somewhat of a miracle, but then we havent hit his bad season yet.     I read that you have had blood tests for the C-kit, is that correct I was under the impression that it could only be done by bone marrow so we havent done it as we havent had a bone marrow done. Is it done in Australia. You sound like you are further along with your testing and help than we are. We are in Victoria about 2 hours from Melbourne. Yes  I would like to keep in touch. I might PM you ,If you don't mind. Isn't this a wonderful site, I have learnt so much. thanks Judy.

Title: Re: My Son's Story Post by judy on 04/09/11 at 23:55:47 Hi Ruth,           I can't see your story about your son anywhere, but I have read your post on 31/1 about making a big deal about your son being sick. We too have been through an ordeal trying to get answers. It has been implied that I am the problem here and making Jarrod sicker than what he actually is. I also understand about appointments. We got our hopes up  thinking someone might actually be able to help here, only to walk out and burst into tears. It got to point that we stopped going to peadiatricians and proffesionals until we got more proof. Now we have more proof we can't find anyone. Anyway I can relate. I would love to read your story if you can point me in the right direction. Hoping everything is alright                                       Judy.

Title: Re: My Son's Story Post by ruth on 04/10/11 at 00:30:25 Hi Judy, look under the parents  folder. It is very frustrating. My GP has been very supportive, but not much help at all. She agress with a lot of what I say, and encourages me to keep looking for answers, she affirms me for what I am doing and says that I am going to have to be the one to find the answers, and I am happy to do what I can but I am not a doctor and need the medical expertise to figure out which trees I should be barking up!  Hearing stories here helps a lot, and realising that diagnosis can take a long time. While that is frustrating it also helps me to persist - the fact that a diagnosis hasn't been found yet doesn't mean it's not there, it just hasn't been found yet.  I think we can be inclined to think that if there is something to diagnose then the doctors will find it, and promptly, but with the immune system this just isn't the case.  I have been seeing a rheumatologist and after ruling out the likely things by blood test I wondered why he was wanting to keep seeing me. My doctor said that was because I might be in early stages of something which aren't yet showing up in the tests. I have heard the same thing about mast cell disorders, the signs are symptoms are there before it is showing conclusively in the test results that the doctors are looking for.     As time goes on my son keeps giving me more of a picture of what he puts up with every day, and while he manages to keep going to school and hanging in there, mostly, something is affecting how he feels every day. While I don't want him being worse and having to miss more school etc, it makes it hard to be taken seriously by doctors, and yet his quality of life is not what it should be and no one will get to the bottom of it. The only  things we seem to be sure of is that he  has a whacky immune system, and histamine is involved in some of his symptoms.  So for now we treat symptoms as best we can, from that perspective, and keep looking for other possibilites to explain some of it too. I'm also holding back looking for more concrete indicators of something, currently keeping a close eye on his blood pressure and HR as he is having dizziness and near-fainting episodes. By the way I am also Australian, but currently living overseas.  Sorry to hear you didn't have a good experience at RCH, the amount of money that gets poured into that hospital you expect the best from it.  I have recently heard about Dr Colin Little, in Mt Waverley, but I have no idea whether you know anything about him (allergist/immunologist but takes a more wholistic alternative approach I think) and I have not heard any first-hand opinions.  I have also looked at RPAH in Sydney as they have a good allergy unit, but I think they specialise more in classic allergies and intolerances.   Well, good luck, and stay strong, dealing with doctors in looking after your own health can be hard enough, but advocating for your child has a whole different dimension to it. Ruth

Title: Re: My Son's Story Post by Josie on 04/10/11 at 08:53:17 Hi Judy , Many of us have been accused of munchausens ourselves or by proxy . I understand completely how this feels . I haven't had a direct accusation , just very thinly veiled ones . I had a doctor say " you may just be one of those people who blue for no reason " ah NOPE . I wiped the floor with him and re attached my nursing balls . I appreciate exactly how hard it is when you have disbelief . I just wanted to encourage you ;-) As I have had an apology from my 2 its all anxiety " doctor and I know you will too xxxxxxxxxxxx many hugs josie

Title: Re: My Son's Story Post by judy on 04/11/11 at 01:10:47 Hi Adele,             Thank you so much for the information. Josie and Ruth,                      Thank you too for your support. Yes we could not believe the response we got from the childrens, but then again we believe they were being led by my pediatrician that was all on about the anxious depressed thing. So we feel that it was not properly investigated. Yes I have also read quite a few stories  about the same sort of thing. Josie WOW an apology (whats that) must have made you feel good. I have always said once we get a diagnosis, all those docs need to know (I would love to be a fly on the wall) if that ever happens. Anyway thanks again for your support Judy

Title: Re: My Son's Story Post by Josie on 04/11/11 at 04:55:04 Hi Judy ;-) Yes , it did feel good ;-) But bitter sweet as well as I wanted him to be right in some ways . But I am much happier being believed . I have a list of doctors who I need apologies from Please keep pushing , you will find help ;-) I hope Adele has helped . Jose

Title: Re: My Son's Story Post by judy on 04/19/11 at 19:49:05 Hi everyone,                  Sorry I havent blogged for a while. Had an appointment yesterday, got those tryptase results. They range from 2.5 to 3.7, they were not collected within the few hours. They were all done within the  10 days except for one of them. Interesting to note that the highest 3.7 was  after the very bad episode in 09. He was relatetively well except for headaches.  He was so ill that year from august onwards., never went back to school for the rest of the year. That was when we went to the childrens and was diagnosed as somatization. He reacted all the time, therefore not improving. I noticed that Lisa keeps talking about the tryptase for a normal person is below 1. Still hunting for a specialist, got someone in mind that has an interest in mastocytosis, thats all we know. He has an interest , thats a start I suppose. I will contact Nancy with those results. Great to be able to talk, and be understood. thanks Judy

Title: Re: My Son's Story Post by Josie on 04/19/11 at 22:10:33 Hi Judy , I am glad you are in touch with nancy ;-) At  10 days these will be seen as baseline . Tryptase only lasts in the system for up to 6 hours in its measurable form . So at 10 days these results are too be expected . What it does do , is make full mastocytosis less likely as due to the number of mast cells , tryptase is in general terms , high all the time . This needs confirming with in incident measurements . Will it rise ? No way of guessing . I shock and am very ill in this and symptomatic day to day . My tryptase is 3 at rest and so far , 3 in a reaction . So ;- full mastocytosis is unlikely for me , as it is for jarrod BUT :- Mast cell activation syndrome / disorder ( mcas / mcad ) and monocolnal mast  activation ( mmas ) are possible or an idiopathic condition . Idiopathic anaphylaxis or similar .Mine , is idiopathic angiodeama ( don't know why but your swelling ). I am in the process of educating a new medical team on my reactions . For Jarrod , he has high histamine . So he is nearly fitting the criteria for mast cell activation syndrome , which was suggested by Dr castells recently ( dec 10 ) . This is the criteria :- Proposed criteria for the diagnosis of MCAS* 1. Episodic symptoms consistent with mast cell mediator release affecting >2 organ systems evidenced as follows: a. Skin: urticaria, angioedema, flushing b. Gastrointestinal: nausea, vomiting, diarrhea, abdominal cramping c. Cardiovascular: hypotensive syncope or near syncope, tachycardia d. Respiratory: wheezing e. Naso-ocular: conjunctival injection, pruritus, nasal stuffiness 2. A decrease in the frequency or severity or resolution of symptoms with antimediator therapy: H1- and H2-histamine receptor inverse agonists, antileukotriene medications (cysteinyl leukotriene receptor blockers or 5-lipoxygenase inhibitor), or mast cell stabilizers (cromolyn sodium) 3. Evidence of an increase in a validated urinary or serum marker of mast cell activation: documentation of an increase of the marker to greater than the patient’s baseline value during a symptomatic period on >2 occasions or, if baseline tryptase levels are persistently >15 ng, documentation of an increase of the tryptase level above baseline value on 1 occasion. Total serum tryptase level is recommended as the marker of choice; less specific (also from basophils) are 24-hour urine histamine metabolites or PGD2 or its metabolite 11-b-prostaglandin F2. 4. Rule out primary and secondary causes of mast cell activation and well-defined clinical idiopathic entities in Table I. PGD2, Prostaglandin D2. I know it is a bit medical worded . !1) But Jarrod has multiple symptoms in different areas . 2 ) Meds wise , I do feel antihistamines at a good level are worth trying again as a improvemrnt is a criteria . 3 ) He has high urine histamine he needs he tyrptase in a reaction 4 ) all the other things we mentioned need excluding . For a while I felt like I wasn't a proper masto patient if I didn't have mastocytosis . That is not the case at all . I remain concerned about the beta blocker . Many of us have been told its all in our heads , or have had barely veiled accusations of Munchhausens . This is where doctors go when they don't know what is wrong . With Jarrods positive histamine level , I feel this is what has happened with you . I eventually asked for a psych exam , because I was so fed up of not being listened to . So , I am officially sane ;-) not many ppl can say that ;-) I know how frustrating this path is . I am not finished on it myself .;-) Tryptase over 1 is abnormal , but not abnormal enough for mastocytosis . With the set of symptoms Jarrod has , the tryptase becomes relevant . You weren't looking in the wrong place with mastocytosis . It is just Jarrod is looking like he has a very closely related condition . You must have done loads of research . Anaphylaxis and reactions in mcad , mmas and IA , can present differently and have a different path to typical allergy anaphylaxis . This is termed atypical . This confuses non specialist doctors further many many hugs and much love Josie

Title: Re: My Son's Story Post by judy on 04/19/11 at 23:12:53 Hi Josie,            Thanks for  getting back so quickly. It's so good to talk,I am having a really bad day myself today, I have my days these days  where I am so depressed and just be in tears all day. Yes I have done loads of research since about Dec o9. Sorry I hope I don't come accross too educated, thats my problem with doctors these days I come across as a real know it all. On the other hand Ive pretended to act dumb before and that doesn't work either. We have always thought that he either had systemic or mcad. That bucket theory thay always write about fits Jarrod. Does that  fit in with systemic too or just mcad. The tryptase was done after 6 hours but within the 10 day period that he was sick, so we still have hope that that might be raised if caught at the right time. Isn't that awfull, but I just want a diagnosis so we all can move on  and get him the right treatment. I just can't see how pretending he hasnt got this thing is going to make it go away. As for anaphylaxis he hasnt gone in full anaphylaxis, gone away with water, the last couple its taken the puffer, So my doctor doesnt even believe this because it cant go away with  water or puffer. There are different degrees of this in mastocytosis isnt there. I hope all this makes sense , I am having a bad day  and just so tired. The thought of going to another specialist and having to explain my story again, with these weird looks on their faces, just makes me so tired. I'm so over all this! anyway thanks for listening. Sorry for my rant. Judy

Title: Re: My Son's Story Post by Josie on 04/19/11 at 23:53:20 Hi Judy, I absolutely understand ;-) being emotionless is not normal ;-) Regards the treatments . Say this is mcad . having Jarrod on a good mix of antihistamines at the right level will aid diagnosis ;-) I have had to move on specialist wise and it is hard , almost like you are reliving it all . But it has payed dividends for me . The dermo / masto / immunology team believed me . Really believed me . They said they may not find the cause , BUT they would treat me and they ahve been good to their word . They have now passed me to a local immunologist who I am collating all my information for . They will see my reactions . We can go from there . Anaphylaxis can present in many ways . Jarrod may not ahve anapylaxis but many symptoms , just not to the life threatening level . Doctors don't like diagnosing anaphylaxis . The bucket theory fits with any skin or systemic mast cell disease . As you keep putting in the histamine . You can also aggravate it with stress, which in me , leads to some more serious symptoms . It takes major emotional upset to shock me .   Has he a asthma doctor ?? as a clear picture on his chest will help . Beta blockers are avoided in asthma A detailed diary of everything jarrod eats / washes it / has contact with and all his symptoms will help reveal patterns . As even with a diagnosis jarrod will have to watch his triggers and how he reacts , so he can identify when he is being triggered and medicate / remove it . I went to my GP's this morning . They had sprayed an air freshener . i flushed and went thirsty +++++++++++. I went outside , had chlorpheramine , a drink of water and settled . If i had stayed there I would have been far worse . My background antihistamines protect me so much . I have only got to a right level for me in the last 2 months . Dizziness , is a fave thing for doctors not to investigate in young people . Did jarrod have any tests for causes of dizziness  ?? I know teary days sweets , just let it run . many many hugs Jose

Title: Re: My Son's Story Post by ruth on 04/20/11 at 12:55:25 Hi Judy, Good to see you here again, but sorry you are having a rough patch emotionally.  I hope today is a better day. How is Jarrod at the moment?   Rereading your story and Josie's comments and questions sparks a few thoughts and questions for me, but I'll try to be coherent about it and not flit all over the place too much.  Thinking about the antihistamine thing  - what doses was Jarrod on in the past, and Josie how do you gauge what is an adequate dosage before you decide if it has been effective or not?  I'm reluctant to keep upping dosages for my son, indefinitely. Excuse me for sidetracking your story, but I would also be interested in whether this is a likely scenario - Cameron has had chronic sleep problems, since he was a baby, tossing and turning until the early hours of the morning, and/or waking through the night,  even when he is exhausted, and so fatigued during the day.  When he is on antihistamines he seems to take himself off to bed early and get to sleep quickly, and sleep soundly all night,  very unlike him.  We have just repeated the pattern that he seems to slip into, of forgetting his tablets for a couple of days, and coinciding with  having a few days in a row of what I think are his biggest food problems (tomato products and some junk food with preservatives). He was back to not sleeping, awoke itchy. He got back on the regular dose of antihistamines, then back to sleeping early and heavily, but also days of total exhaustion within  the few days after the lapse in diet and medication. He is on Zantac and zyrtec, which I  believe to be non-sedating, but it is almost like they have a sedative effect on him. Could they really be affecting his sleep patterns just by acting on his histamine activity? Judy you mention sleep and fatigue for your son, have you seen any changes in his sleep patterns with anything you have tried? Calrifying the ideas about tests and markers, does this mean that tryptase levels are key to indicating mast cell activity because other mediators, like histamine and prostaglandins come from basophils and other places, but tryptase is only released by mast cells?  Judy with his high IgE was any reason for this picked up? - my son has very high IgE (in the thousands) but has not tested clearly positive for any of the typical antigens, which is puzzling and no-one can explain. If beta blockers can cause degranulation is this possibly leading to his high histamine levels (sequence of symptoms appearing?), so the possibility of a MC activation problem being secondary to something else as the primary disorder, and the beta blockers? Josie why is dizziness such an easily dismissed and overlooked symptom, and how many times does a person need to actually faint before it is taken seriously?   Can you hear my frustration getting the better of me again?   Judy I can really relate to that feeling of not wanting to face yet another specialist, even though it offers the promise of maybe this one actually being helpful and being the one to have some answers.  It feels like you go into an appointment with a target strapped to your chest, setting yourself up to be taken shots at.  I have had some very affirming comments from my GP, and I try to maintain my confidence in what I do know, and the reassurances I have had that I know my child better than anyone, and can trust my instincts. I try also to go in remembering that I am there to scrutinise the doctor as much as them me, seeing if they say things that show their credibility, or otherwise - in which case it is easier to be immune to the unhelpful things they say.  But it is so easy to be put on the back foot when a doctor thinks they hold all the power and the knowledge, when it just isn't the best way to  find answers in cases like this.  I have also been told to just let my son get on and be a normal teenager, implying he would be fineif I would just stop focussing on his problems, as if that will magically make him healthy -  ignoring his health issues thinking this will make them disappear clearly has never worked for him, when we give up in frustration or lack of anything else to try, over and over the pattern of symtpoms repeats itself.  Rather than seeing that I am looking for the understanding that will allow us to deal with the symptoms and that is how he will be able to get on and be a normal teenager, not by playing the 'Emperors New Clothes'.   Hang in there, you will get there, and I hope this next specialist is the one that will make a difference for you. Ruth

Title: Re: My Son's Story Post by Lisa on 04/20/11 at 15:13:58 Hi Ruth, I'm sure Josie's asleep right now since she's several hours ahead of us.  I'll try to answer a few of your questions. How do we know whent he medas are adequate, when there are no breakout reactions going on.  I've been very impressed as to how much better I feel and how much more STABLE I am with my increased meds.  Once Singulair was added to my medications things improved GREATLY!! As to the doses, Ruth, you need a doctor's help with this especially since your son is still a child.  The pediatric doses and forms are different than for us adults and although you, yourself can fiddle with this, it's best to have a doctor doing this for you - working with someone like Dr. Escribano or Dr. Castells.  The children's bodys are different from ours and their needs are different and since each of us are working with different things here, it's hard for you to go by our situations.  For example, Josie is working with angioedema.  Her angioedema may be mast cell related, but until her doctors can pin this down, she's got a different situation from the rest of us.  You see, because Josie's situation is a bit different, she doesn't respond to the very same medications that an SM patient would.   You see, Ruth, this is part of what is so challenging for all of us, for our doctors must personally tailor our medications to meet our body's particular needs.   Yet, as though that isn't a big enough challenge, you've also got differences between us in that now that the WHO consensus has recognized the diagnosis of MCAD, it opens up the consideration as to other forms of mast cell related disorders.  From what Josie knows as to her investigation, she's so far restricted to being an angioedema patient.  Angioedema has a few different mechanisms behind it, one being autoimmune, another being hereditary.  Well, her angioedema may be mast cell related, but she's not a Systemic mastocytosis patient.  This is another form of mast cell disorder.   It's rather confusing, Ruth and so let me see if I can set you straight - if we put all of the mast cell disorders on a line, you will put on your far left hand side Systemic mastocytosis.  This is a MC proliferation disorder.  There are too many mast cells.  It's a neoplasm and it invades tissues.  The next on the list sits right smack in the middle - MMAS or Monoclonal MCAD.  This is a mixture of the neoplasm with possibly the non-clonal form.  It is recently discovered and it produces very severe reactions in the patient, but it is not as damaging as the SM form is.  Then to the right of the spectrum you have MCAD and within this group you have the autoimmune form but you also have the non-clonal form of the disease.  The non-clonal form means that although there is MC activation seen, it appears that there is a dysfunction of the mast cell but that it is not a neoplasm and that it is not invading tissues.  Within this form you will find the form of angioedema that Josie seems to have.   This is why Josie's medications are different than for some of us as well as the behavior of her disease - it attacks her body differently.  She gets the classic angioedema where the lower portion of her body has extreme swelling and she has all kinds of reactions but she also has the anaphylaxis that masto patients have.  Josie's case is the missing link between the true angioedema patient and masto.  You see, Angioedema, the classic angioedema is NOT a mast cell disorder.  it doesn't involve the mast cell.  It has other mechanisms behind it.  But a case like Josies has a foot in both areas, masto and angioedema and this is why the same kinds of meds she needs and doses may not work with her like it would work with an SM patient.   Here, let's take my case.  I'm suspected of the MMAS form of masto.  Well, I'm also autoimmune!  I don't have a great deal of issues with foods or with chemicals and the such, yet, that's most of the time - I will have it some of the time.  But my problems are major cardiovascular reactions and I do a lot of fainting.  My doctors have to tailor my medications to help deal with my particular problems and doses accordingly.   If you take Heather, she's purely autoimmune and totally non-clonal but she's not got the angioedema that Josie has.  So her medications are different from Josies but also from my own.  And if you speak with Joan, she'll pipe in with other medications since she's an SM patient.   So, Ruth, in talking about your son's medications, and your feeling uneasy about upping those doses, you should be.  Antihistamines can be cardio-toxic if they are in the wrong doses and mixtures and your doctors really have to have an understanding of how to adjust these meds properly.   Now, as to forgetting his meds, Ruth, if you had this disease, you would never forget to take your meds for if you could feel how miserable you felt without them, you'd know how vital it is to take them on time every day.  If I pass a coupld of hours I begin to feel this gnawing in the pit of my stomach and the malaise rises up and I begin to feel so awful that it's not funny!!   I was in the middle of the pharmacy stocking up on my meds and I got to the point that I couldn't think straight!!  it was AWFUL!  I knew I needed my extra meds just to get myself out of the pharmacy! Zantac and Zyrtec are non-sedating.  Yet, insomnia is a recognized problem for some masto patients, Ruth.  If he is sleeping more heavily but also more soundly then perhaps he's finally having a normal night of sleep and yet it seems strange to you because of how badly he has slept all his life.   As to the exhaustion and your description of how he is when he's off the meds and on bad foods, that is very normal!  He's REACTING and it's very, very taxing for his body.  It takes about 3 full days for the mast cells to replenish their stores once spent and all of that takes a great deal of energy.  Then you add on to it the normal growing that his body is demanding of him and you have a truly exhausted child!! Ruth, make sure that Cameron does not skip his meds!  He needs them badly and you've got to make sure he doesn't miss a single dose! As to his high IgE, has he been properly tested for worms??  Joan can give you some excellent information for a type of worm which will skyrocket the IgE levels.   As to the beta blockers, they won't elevate the histamines high enough to matter, Ruth.  This is proven MC activation and this is masto!!   So, don't worry about the bleta blockers but he really should not be on them since they can interfere with the way epinephrine will work in a crisis.  My cardiologist wanted to put me on it too, but Dr. Castells intervened and said NO WAY!   Dizziness is easily dismissed because 1 - it's not a serious symptom,  2 - it's caused by so very many minor problems that it's not seen as anything important.  You can get dizzy from dehydration!!  Granted, dehydration can be life threatening, but doctors won't put it into the same category as a tumor or something and so unless you've got something that seems really "serious" behind that dizziness, they expect you to "live with it"!  Sad, I know, but I think that it's more of a defense for their not knowing what to do to improve it.   AS to those foolish doctors and their comments, Ruth and Judy, THEY ARE FOOLS!!  They are merely trying to turn the focus off of their own inability to recognize and deal with these kids symptoms and illness!!   I recommend that you try turning the tables on them and ask they why they can't seem to recognize and treat the symptoms?!!   It's becoming all too easy these days put the blame on the patient or on the mother when in reality the doctor is totally CLUELESS and yet won't admit this openly!!  I have learned to trust those doctors who open up the game with me and ADMIT that they don't know what they are dealing with!!  These doctors win my trust right away!!  They won't put me into danger knowing that they don't know what they are working with!!  They go cautiously!! I hope I've helped a bit.  I know that Josie will pop back in here and address your questions too!! Don't worry ladies, keep pressing for answers with doctors.  I'm certain you will find them!! Hugs! Lisa

Title: Re: My Son's Story Post by ruth on 04/20/11 at 18:39:56 Thanks for the explanations Lisa, great summary.  I also find that I keep going back to the article you sent me about the proposed criteria and find that helpful, just can't keep it straight in my head all the time. I have to keep asking the clarifying questions to be sure I'm not missing something or getting something a bit wrong and running off on a wrong tangent.   I might have confused things a little by butting in on Judy's post about Jarrod, but there is some overlap.  Just to clarify, Jarrod is the one on the beta blockers, not Cameron.  The range of presentations, as you pointed out, is very important to keep in mind as we read about other's medication regimes and the temptation to play around with our own, or our kids intake.  Cam is now in an adult body, taller than me and with an adult body weight, but it is still an adolescent body so I'm not if that is relevant and changes anything. Cameron is getting the message about his medications, and diet, and dehydration,  but unfortunately he is a teenager, and he has always been a child who has to learn by doing and experiencing the mistakes for himself. It worries me, but we have talked about this in all different contexts, as he gets older and the stakes get higher with the risky choices he faces.  Because the antihistamine regime is new to him, and not addressing all of his symptoms, he is still figuring out how important they are to the way he feels. I see the patterns, I think, like the effect on his sleeping, he needs to recognise the difference for himself.  All I can do is keep trying to help him see the connections and understand his body. That's why I was looking for opinions about it, it is too easy for me to see what I want to see, which is support for the MCAD theory to explain his problems.   I think why he doesn't yet have the night and day experience, on and off meds, is that he has lived with chronic low level symptoms, possibly all he knows, but the average doses of antihistamines haven't yet removed those. I think they keep the major episodes at bay, and settle th toher daily things,  and that's what we start to see more clearly when he misses a day or 2, but his pattern is not blatant enough yet, at least for him.  I do think it is gradually sinking in for him, because he now comes to me with comments about things he is experiencing, unsolicited, and showing some understanding of what I've been saying for months now.   For example last week he was telling me that he always feels worse in science classes, particulalry feeling flushed, tired, dizzy, headachy.  The 2 factors he thinks might be relevant are the fact that he sits on a stool rather than a chair (probably affecting his venous return and BP I guess), and they spend a lot of time working on laptops which he finds gets hot under his wristswhere he rests his hands on his keyboard.  Quite astute observations I think, and totally his own reflection about it. I was concerned about the possiblity of worms underlying the IgE, but this was dismissed as his eosinophils were normal, and apparently should be elevated if this was the case.  He also had stool sample tests about 6 months ago which were clear, but I know some of these obscure things can be hard to detect.  We lived in China before Belgium, and who knows what we were exposed to in our travels there. I do wonder, if it was an old infestation, no longer acute, would the IgE stay high even after other things returned to normal?   So my ongoing challenge is to get a doctor on board taking it seriously, but we will get there. We may be moving again over summer back to our previous location, where we can go back to the dermatologist and immunologist who first saw him. While we didn't get far then, with another couple of years of observing his patterns, and what we now understand, I think we may be able to make some progress with them. I can see now they took him seriously, they just hadn't come to any answers.  It is also why I am holding off pushing for a new referral here, until I know whether we will be here to follow through on it.  Thanks again Lisa, and sorry for hijacking your thread Judy.

Title: Re: My Son's Story Post by judy on 04/20/11 at 19:08:52 Hi everyone,                   Thanks everyone for your support, and definately very sorry about yesterday. Having a much better day today.Having you all there for support yestday was good too. Ruth his sleeping has been an issue since he was a baby, just thought that was him, now its all making sense. I read that bit about 2am being the peak of histamine. Thats making sense. I would say he probably gets his hours but at the wrong time. He much prefers to go to bed at about 11pm. Thats alright if he is sick or school hols, but on school nights its hard to get him to bed earlier. He has an earlier bed time at 9.30 on school nights, which sometimes works and sometimes he cant sleep. When he is sick and really bad, scared etc he can sleep with me and Ive always said he gets better nights sleep in the later half of the morning. It, after 2am but I just dont know what time. Keep more notice on that one. The first half he is just so restless and moaning and groaning ,waking up all the time. His IgE  was first detected in feb 09, after I asked  for it and it was the first test that ever showed anything.That was the highest  1854 and the lowest has been 922. Yes mothers instinct has played a part here, and always has been behind pushing and getting answers. I must say with all their negativity  you  start to doubt yourself though. I have episodes before we got  one positive test that everyone thought I was mad, that I was thinking maybe I am, but then I thought of everything that has happened in the past and thought NO theres always been evidence all along. Now I must clarify some things girls, all those sympoms I have mentioned dont happen every single attack. The main ones are: pallor,malaise, fatigue (cant sleep) Nose issues, stomach problems and headaches are frequent though. Skin lesions like those ulcer, burn like things are  a recent addition. We would like to get a biopsy done if it happens in the right place. He has had one very nasty one around one eye (like that youtube vid) two on his tummy button, and one on the top of his ear(cartilage) The giddiness has happened about 2 or 3 times. The asthma is not really an issue since he had been hospitalized when he was nearly 3, that was particullly  bad. We have noticed that before he got that damn awfull dry cough, he would get a bit weasy. He gets weasy the last 2 or 3 episodes of so called anaphylactic looking thing. He has had that anayphlaxis (whatever it is) about 5 or 6 times. We have noticed that cordial can set that off sometimes. We really do feel that food and medicines are not really the problem here . His main triggers are wind, pollen , grasses, trees, and some chemicals like , his brother came home from school with headlice so I treated the whole family and that night he reacted. It had eucalyptus in it, its not the first time hes reacted to that. Imagine living here in Australia and being allergic to that.He couldnt seem to tolerate the menthol type cough lollies for his throat either. It seemed to help with the nose stuffiness, but he would prefer to put up with that than take those. Cordial is a problem with the anaphlaxis. Night time seems to be the time he would come down with a 10 day stint. The 3 days to recover makes sense too. On the 8th day you can see a slow pick up in energy, bit more brighter, and more color in his cheeks. By the 10th day he would be back at school not 100 percent but able to handle school. Thats when those petechulal bruising appeared on his upper arms. That hasnt happened for a while now. They seemed to signal the end of an attack. By the way do you know how they said he got those bruises, he sucks them dont you know! (courtesy of the shrinks) Ruth, I hope your son is OK, Jarrod is well at the moment except the daily symptoms enjoying the school hols here at the moment. Yes I know you really are still worried about the beta blockers, but everyone has seen an improvement, and he has been at school more often.Still does get sick but less often. Yes i think he was undermedicated in the past for antihistamines etc. Talk more about that next time. Thanks for replying ladies. Happy Easter sorry for such a long post Judy

Title: Re: My Son's Story Post by ruth on 04/21/11 at 00:08:32 Glad you are having a better day today Judy. No need to apologise here, this is the place for that venting and honest expression of feelings. Jarrod's sleep patterns sound so much like Cameron's. Even as a baby he was like this, but not the colicky, distressed baby, just could not settle at night, but would sleep quite well in the afternoon. He is my 3rd child, otherwise I would have thought it was just being a new mother who couldn't settle a baby that explained it. I remember talking to my MCH nurse about it and suggesting I might try changing my diet (he was fully breastfed), she totally dismissed that idea. One dermatologist mentioned that histamine has a natural cycle to it, but I have never heard anyone mention this. for a long time Cameron seemed to be on about a 6 week cycle of flares,  I don't know if this relates o that histamine cycle, I've never heard anyone else discuss it.   The only allergy testing that Cam responded to, moderatley, included peru balsam, which is a plant extract, and in and related to a lot of things, not only foods. Because of that there was the suggestion he might have trouble with salicylates, which   are found in plants. I know you don't see a diet connection, but maybe it is worth looking into the cross reactions and connections, with him seeming to be sensitive to pollens, eucalyptus  and menthol products.  It still wasn't seen as the source of his problems, but adding to the load and filling the bucket.  Glad you are having a good holiday, hoping he stays on top of things as you head into what has been the peak time for him. Ruth

Title: Re: My Son's Story Post by Josie on 04/21/11 at 01:06:39 Hi Ruth , I agree with some of what Lisa has said and disagree in others. I do agree conditions are on a line . But we can't say where I fall on it . I have not had a 24 hour histamine collection or prostogalndins for the reasons you have worked out . Also my current medical team have not witnessed my shock . My tryptase remains 3 . My CRP has been high from my first week of illness . My angiodeama is not confined to my lower body . I have swelling all over inc my face , mouth and throat ( epi pen level ) . I also have a large number of other symptoms . diarrhoea vomiting , bowel spasms flushing ++++ pallor blueness on exertion pain - abdominal , back and other places - chest wall , bone pain shakiness spams of any muscle group all over my body headaches from mild to migraine extra bleeding = bowel and vaginal , gums dry eyes mouth ulcers daily wheeziness increases to full throat close in shock Rashes - little red dots and freckles which urticate in a reaction night sweats pule 90 at rest , high in a reaction high BP in a reaction , lowers quickly There is more , but thats most of it. I have found that getting onto 3 antihistamines at maximum does has helped me significntly . Although my meds read different , that is because I am in the UK . I am on typical mcad meds currently . Sleeping wise , I am much more settled on this dose of medications . I was waking hourly , especially when I had corn flour in my meds as sulphites give me drenching sweats . Hydroxizine is the one that has made the biggest difference to me . I have fatigue every day , but far worse after a reaction . I call it the ton of bricks landing . I have a lul , where i don't feel as bad as I should , then it hits .  Any change in meds or any accidental food reactions will have this happen . I agree with lisa that you need to work alongside your doctors with dosing . But I do think getting a stable level will reduce the ups and downs . I have taken a while to get used to my medication load . I know I need it , in no doubt at all , but sometimes I just want to be normal . I know this is me . And I don't miss any meds . Its just there ;-) Maybe cam feels this ? Any insinuation direct or otherwise that the problem is yours is very hard to deal with . We have all been there . You are a good mum and you are fighting for your sons health for good reason . You are not paranoid or making it worse . I ahve found family , freinds , medical staff go through stages of accepting I have an illness. This is :- It can't be she's young / the same age as me shes depressed shes in denial shes obsessed finally - yes , its a fact , yes she is coping . This seems universal . You know cam and you can see where he has problems . You are a good mum . I did , carry on as normal , now I do what I need to to give me my time ;-) My illness is here ;-) I found before I wanted to talk but I was met with platitudes and this stopped me . So i felt very alone . Once others understood , I have been able to talk and things run so much better as we can all say what is really on our minds . My family didn't want to upset me by asking , but it wasn't them . It was my illness . Dizziness is a difficult symptom . It can be nothing , but can be something . I know my dizziness . This sounds mad , But I do . I know when its daily stuff against a syncope / near syncope - where I go vvvv pale and have to lie down . This happens even sitting up. I am very sure cam knows his as well . With reaching a good level of background meds , my daily dizziness is much controlled . Dizziness from a trigger comes at rest . My take on this is , with triggers I have degrees of symptoms . Dizziness comes from reduced circulating volume , once ear problems have been excluded . In my daily life I have many things which can reduce my volume . minor reactions , heat triggering mast cells , any other trigger , diabetes . Removing myself from the trigger ( heat , perfumes etc ) and drinking plenty and medicating is my stock plan . Occasionally I will have a shock where I haven't been able to act quickly enough . But my epi pen works for that . Caution should always be taken with children . BUT . I think they still need medicating for stability . This just needs more frequent review as needs change with age , size and reactivity ;-) Histamine and compliment make blood vessels pours , then leak protien and fluid , this leads to the reduction in volume . When you are having regular events , minor or major - this loss will need compensating for . We are lucky that this makes us thirsty , so if your thirsty , drink ;-) We are also prone to losing fluid through prostoglandins making our kidneys filter out more and sweating . High pulse adds to this . Shock thirst , is like your mouth goes bone dry instantly . I am likley heading into hospital , my cholesterol is off the scale . So If I go quiet , thats why ;-( many hugs Josie

Title: Re: My Son's Story Post by ruth on 04/21/11 at 14:09:55 Thanks Josie. The picture still comes together looking like a MCAD, your comments about the dizziness and blood volume included.  It just makes sense.  I am reverting back to posting more comments on my original thread under parents of mast cell children, so as to let the conversation here get back to Judy and her son.

Title: Re: My Son's Story Post by Riverwn on 04/21/11 at 17:36:03 OK a few points here. First, having a Tryptase level drawn when having a reaction, it more precise than mentioned. You wait one hour and have it drawn BEFORE the third hour after the reaction (thats when the tryptase levels goes down fast) Any longer than that, just consider it a baseline tryptase. Next. that petechei that shows at the end of a reaction comes from a heparin "dump" into the bloodstream by mast cells. That is the "other" job of mast cells, they are in control of the bodys natural heparin. I bleed under the skin on my arms after reacting, its very frequent and thats one of the points meant when you see that Masto often has blood dyscrasias (problems) associated with it. I was just in the hospital and they wanted to give  me a blood thinner to prevent blood clots in my legs--that is the only med I refused to take and that is why. I explained to them that my blood can go from too thick to too thin quickly when I am reacting, so your son has a concrete reason for that happening. Lisa, that is THE BEST explanation of the different types of masto I have ever read! You taught me also, how to tell the difference. Nicely done. hugs to all Ramona

Title: Re: My Son's Story Post by judy on 04/21/11 at 23:28:18 Hi Ramona,                 Glad youre out of hospital.Hope your'e doing better. Jarrod also had some scratch thing on the 10th day, it's been nicknamed the cat scratch on the back of his neck. I will try to explain it . Didnt show up too well on photos. It was like 4 vertical lines then a break, then 4 more underneath. Along each line were dobs of blood. All of this was smooth, under the skin. Another thing he has had once was some wriggly red line rash all over his body, lasted a few days. It seemed to be  more prominent in parts than others, then the next thing it seemed to be more prominent in another part. Hope that makes sense. He's had some extremely weird things happen, not normal. And Ruth dont worry about hijacking my site. Just reading everyones story is helping. Ive learnt more in the last 6 weeks or so by reading all their stories, than I have in the last year or so. Ramona thanks for your explanation. Judy

Title: Re: My Son's Story Post by ruth on 04/22/11 at 02:49:27 It is really helpful isn't it, hearing others' experiences, so much that you just can't get from a doctor.   Cameron has had some severe bruising in the past, now I can see the heparin connection.  The deramatolgist was horrified at the sight of the bruise left when one of her colleagues removed the dressing over his patch test - bruising from pulling ofF adhesive bandage?!  The latest unusual thing on Cameron's skin was a small spot that appeared on his arm, unlike anything he has had before. It was in the crease of his elbow, right about where he had blood taken about a week before, and looked like blood beneath the surface, but not a blood blister. It was about 1cm diameter, quite round, and very dark red. It disappeared after a few days.  Unfortunatley any time we try to photograph things like this, or his face during a reaction,  they never seem to look as obvious as in person. I know how you feel about wanting tests, and hoping for an opportunity to get some answers,  I have taken him a few times now when things have flared wanting tests, but my doctor has thrown her hands in the air and said she doesn't know what to test, and she won't just take a stab in the dark. So frustrating, but that was before I had found this site and had more understanding of it myself.  Now I know what I would be suggesting to her.

Title: Re: My Son's Story Post by judy on 04/25/11 at 00:06:13 Hi everyone,                   I went to the pharmacy, and found out some things that I thought I might share with you for some input. In the past before we knew about masto, but was convinced it was something histamine, we have tried just about every antihistamine on the shelf just the usual doses with no help at all. Then last year when we found masto, we tried a H1 and H2, singulair and a mast cell stabilizer.They are as follows:                                          Lorano 10mg  (one a day)                                          Zantac 150mg (half twice a day)                                           singlulair 5mg ( one twice a day)                                          mast cell stabilizer (think that was 3 times a day) The mast cell stabilizer was from the naturepath. The thing I found out today was that Lorano is a  homebrand of clarityne(claratin). They said that claratyne is one of the weakest ones, I remember reading something that they didnt reccomend  that one on this site somewhere. They recommended Telfast or Zyrtec. Another thing is too that he was 11 then, he is now 12 and considered an adult with antihistamines now. I am now wondering if that is why they were unsuccessful then. They said too that under a pead or specialist they could use more than what the packet recommends. Thanks Ruth for the info. I will contact nancy with this bit of info too. Another thing I was wondering  with his methyhistamine test so high (3.1 should be 1.5) is there any other disease that he could have. My naturapath has been very supportive, and helping me figure this mess out,thinks we are definately on the right track with mastocytosis. Thanks for reading Judy.

Title: Re: My Son's Story Post by ruth on 04/25/11 at 01:04:46 Hi Judy, good to hear you at least have the support of a naturopath to sort this out. Do you know what the mast cell stabiliser was? I know it can be hard to get Zaditen in Australia, but wondering what alternatives there are. I think Telfast is recommended as it lasts longer, whereas Zyrtec is really only effective for about 8 hours.  Are you going to try antihistamines again?

Title: Re: My Son's Story Post by judy on 05/04/11 at 23:18:11 Hi everyone,                   Well the dream run has come to an end. Been sick since Sunday night. We got the tryptase done in the ER, this time should be in the right time. I am so anxous waiting for the results. Nancy said that his results are low, but they keep changing, meaning there is something mast cell going on. He  is supposed to be going on camp next week. I don't know whether that is going to happen now. cross fingers it will. I have been worried about his brothers too. I have just got an IgE back for his 8 yr old brother, that was high too. 875 (should be less than 52) I am wondering if it might be better to biopsy one of his skin lesions  as he has mainly skin involvement. Always thought it was excema. I might be just being paranoid, but it is hard not to worry. Anyway thanks for reading. Judy.

Title: Re: My Son's Story Post by ruth on 05/05/11 at 02:54:30 Hi Judy, It is hard not to worry, but hopefully some test results will give you something concrete to go on. It is easier to calm the  fears and worries when you start to make progress with some answers. It would be helpful if someone could make sense of the timing of his flares at this time of year - what is it that changes so consistently in May?? Seems too late to be related to pollen.  Woodburning stoves being used over winter?  I'm sure you have thought of every possibility already. When will you have the tryptase test result?  What were his symptoms with this episode? Ruth

Title: Re: My Son's Story Post by Lisa on 05/05/11 at 04:24:05 Hi Judy, The IgE levels have to do with TRUE allergies.  Mastocytosis doesn't create TRUE allergies.  In fact, many of us have rediculously ZERO markers for IgE allergies and this is part of what drives the doctors NUTS because we are horrendously "ALLERGIC" but in truth, these are  PSEUDO ALLERGIES.   For some reason, some of us won't have any kind of allergy antibodies to things.  My levels are so very low that my allergist was shocked and said she'd never seen a patient with such low levels..  I'm not the only one here and there are other reports that show that SOME of us masto patient are in this same situation of negative IgE markers.  It's normal for all of us to have some kind of markers within normal ranges, but showing that we have the propensity to be "allergic" to something even if it's just dust.  Well, I do show on my IgE panel that the IgE to dust is "raised" more so that the other markers, but it's still so in the normal ranges that it doesnt'even make it to the "slightly elevated" range!!   It too is still in the low normal range and everything is so negative that it's the below normal range!!   This is typical to masto patients, but how common it is, isn't known.   However, please be at peace, Judy, because just because your son is showing high levels of IgE antibodies, this doesn't mean he has masto!!  You don't develop mastocytosis because you are allergic.  In fact, there is a study that shows that masto patients are as allergic as the rest of the population.  that study proves that being allergic doesn't make you a masto patient and nor does having masto make you more allergic than the general population.  It just shows that the amount of masto patients who are also allergic and as common as the people who don't have mastocytosis.   So this should put you at peace. Now, as to your son's eczema, you should have this biopsied for with one case in the family it's entirely possible that it may not be just "eczema" as your doctor thought it was.  The skin must be biopsied and then put through the immunohistochemical staining for mastocytosis.  ONLY THEN can your doctor say that it is indeed only eczema!!  Masto can and does run in families!  It's rare, but it does happen and so when you have one child or yourself who is suspect, any kind of other "allergic" issues with the others is under suspect!! An example of this is within my own family.  My son of 20 years old was diagnosed with proctitis, an inflammation within the intestines and was bleeding from his rectum!  Well, when we found out that this can be autoimmune related, my gastro and I jumped on it and a generalized autoimmune panel was run on him and when it came back showing nondescript markers, my masto specialist jumped on this and had a GI investigation run.  Sure enough, we've found it!!!  My son is in the very infancy of the disease and we need to continue working up his case to understand to what extent and the form of the disease with him!   My elder sister is another for she had a case of full blown anaphylaxis after eating fish one evening - almost died from it!  She had an IgE panel run to see if she was allergic and it came back ridiculously negative!! (hmmmm where have I seen that before?!)  Then, she's had some issues with fatigue (another clue) and yet nothing seems to explain it.  Now she's showing that she's not tolerating alcohol (again a clue!) or heat. and some foods! (more clues)....and now she's been found to have osteoporosis and osteopenia (this is indeed something masto causes in patients!)   Well, with all of these clues, I've had to come right out and raise suspicions to her as to mastocytosis insistingt that she go see Dr. Escribano (she lives in Ireland)  because she may not have SM but may have MCAD instead!  She MUST check this out before she can put it down and give a deep breath of relief!!!   Masto can run in families, Judy.  My case throws a shadow of suspicion on my family and when they have some issues which masto can be related to, that shadow must be taken seriously.  In investigating these things, the negative answers are what can give you the peace you need to have in regards to your kids.   Yet, the problem with masto is that it's so very slow growing that even in ruling it out may be only for now, but in lieu of anything else it keeps masto on the back burner, in the background to look at later on.   So, don't worry, Judy, if your boy is showing only raised IgE levels, this has nothing to do with masto! I hope this helps! Lisa

Title: Re: My Son's Story Post by judy on 05/06/11 at 00:25:19 Hi Ruth and Lisa,                        I've thought about the timing for a while, all I can think of is in May that's when you can really feel the change in the weather with winter coming on. The heaters start to come on more often too. We havent got a wood heater though. Sometimes I think this disease has got a time clock, because if I go back to previous years it seems to be just about to the day, not always. There have been a number of other things that I have started to worry about his brother make that brothers. Lachy 8, has in the past had  a few episodes of vomiting, stomach pain which nobody else gets. A couple of times had a distended stomach. Just recently though, last October, November he started to get very anxious, he always had fear of thunderstorms but got to the point that it went way overboard, his fears became a real issue ,got really scared , couldnt talk reason, got real scared over a little bit of rain that didnt worry him before. He seeemed to get real anxious about other things, that didnt seem to have anything to do with him. Then in the new year it all stopped, he still had his fears but a more reasonable level. He also complained about not being able to see. Had his eyes checked and he had perfect vision, said it was propably pollens.He said he was sick of being tired early all the time, in the spring. I,ve now become worried also about his younger brother nearly 5,  he has also had episodes of vomiting, tummy pain, laziness, complained of being tired. When I was nursing him through one his tummy pains, all I could think of was this was so familiar to what was going on with Jarrod when he was about 2 or 3.No one seems to get these. Jarrod of course is the one that is affected so much, with the way its altered his life. Ruth his symptoms this time are the usual ones. malaise , pallor, cant sleep and no energy, little bit of a sore throat. (along with constant su An interesting thing I have noticed for a little while lately is that there seems to be a peak on the 5th night. He had this last night , he seems a lot worse, the sleeping is so bad, slept with me, moaned and groaned all night.That can last a couple of nights , or just 1 night then go back to the same as it was. start to slowly pick up on the 8th day. I don't know whether this was always happening , I seem to notice more and more these days. Iv'e watched this thing for so long. Sometimes I think I am being paranoid about his brothers, thanks Lisa about your comments. I wonder if I can talk his doctor into doing a biopsy. By the way thanks for that information Ruth, it was very interesting. Notice the throat clearing, cough, and sleeplessness. By the way can someone explain something to me, Nancy has a suggestion what was going on with Jarrod which makes sense except one bit. She said that when his mast cells were activated, send signals that bring other mast cell to the area and activated them. If this goes on for a few hours, a signal to the bone marrow causes production of more mast cells. When he is highly symptomatic for days  he is building up more and more mast cells slowly.Then he will be symptomatic for a lenghthy time until you are able to calm the mast cells and give time for the extra ones to die out. The bit I dont understand is I thought the problem here is that the mast cells don't die. Anyway thanks for reading , hoping it all makes sense. Judy.

Title: Re: My Son's Story Post by Joan on 05/06/11 at 06:37:54 Hi Judy,   I'm sort of jumping in here in the middle of the conversation, but throat clearing, cough, anxiety, and sleep difficulty can be signs of asthma.  Don't know if he's been tested for it, but it can co-exist with mast cell disorders.  It also can be at a low level where the wheezing isn't yet apparent.  This would happen more at night because histamine levels rise dramatically then.  Post nasal drainage can trigger this problem, and can cause the sore throat.  The drainage could be triggered by allergens, but also by irritants (heater) or foods.  With a food trigger, it may not a true allergy, but instead a vasomotor rhinitis (which you can Google).  Asthma is an inflammatory disease, so mast cells could be elevated from it, but I don't know that for sure.  A spirometry test might show up something if he hasn't already had one.  Another thought is reflux.  Reflux can cause sore throat and fluid from the stomach can be aspirated into the lungs, causing a cough and sore throat along the way. If these have both been considered (and neither would rule out a mast cell disorder), then I just hope someone will get to the bottom of this soon for the sake of all of you.  You're doing a great job being persistent!!

Title: Re: My Son's Story Post by Josie on 05/08/11 at 10:17:01 hi judy, i am on my cell so a bit short . i have what i call slow burn with increasing symtoms over a week. so i understand jarrods symptoms. nancys explination makes sense . mast cells do not die off in mastocytosis. due to the gene mutation . in ia . mcas without the gene element compliment . prostoglandins attract more mast cells in a snowball effect . i will write more soon when i can use my laptop. coughing \ clearing my throat is an inhalant warning \ caramel colour in minute amoumts  xx many hugs .

Title: Re: My Son's Story Post by ruth on 05/08/11 at 14:09:48 Hi Judy, I hope Jarrod has picked up, and is well enough to go on camp. Hopefully you will have that tryptase result soon to see whether that sheds any light on things for you. My comment about woodburning stoves isn't just in your own home, if you live in a country area and there are more of them around the levels of emissions in the air will be higher as the weather gets cold and people start using them.  You don't have to have one yourselves to be affected by that. Have you taken a look at info and pictures of skin involvement with masto?  I would have thought eczema would present a little differently, but I'm not sure. I'm also not sure whether any of the researchers are questioning a connection,  I think eczema is considered atopic, and his high IgE would probably be seen to reinforce that.  It doesn't mean your other son doesn't also have a mast cell disorder, but you might find it hard to convince a doctor to do a biopsy, yet, if it looks like excema and there isn't seen to be a connection to MCAD.   Has he also had allergy testing to identify specific allergens?  I wonder if your son's anxiety regarding rain and weather is related to the ridiculous number of natural disasters that have happened in the past 12 months, particulalry involving flooding in Australia.  Seems too obvious I guess, but these things can have a huge impact on kids at an age where they are old enough to grasp it but not old enough to process it and keep it in perspective. I get the impression there is still so much that is speculation about the nature of MCAD, and the idea about mast cells not dying off is just one of the theories.  If there is no evidence of too many mast cells being created (i.e. a neoplasm like mastocytosis) then this is the other way they postulate too many hanging about in the body.  Cells have a lifespan, and the body is programmed to make cells at a rate that replaces them to keeps the levels right. If they aren't dying off as quickly as they should you are left with too many, even though you don't have a neoplasm.  Someone correct me if I'm wrong, but I'm not sure this is proven, just suggested as one explanation for some people. I know how you feel Judy, it is so hard to see the wood for the trees with this situation. I also see red flags with my other 2 kids, but is this just a family prone to classic allergies, or is there a common underlying MCAD that accounts for all of our individual pictures?  My daughter is allergic to beestings and had asthma when she was younger, my older son has seasonal allergies, and they both have dermographism. My older son has also had GI episodes and one episode of hives that started to affect his breathing, he has always had allergic shiners, and post-viral asthmatic cough.  Because we do have the classic atopic IgE mediated reactions, it's hard to know whether that accounts for everything or whether to look further for a MCAD. For now, I am just a little more vigilant and observant, and warn them to be more careful and aware of the likelihood that they are prone to 'allergic' reactions.  I will have my older son worked up for allergies, but I want to see what comes of Cameron's investigations first, as I think it would be helpful to have that family history as background, and Cameron's symptoms are more severe and affecting his life more than the others. Ruth

Title: Re: My Son's Story Post by Riverwn on 05/09/11 at 09:08:26 Hi Judy, I hope the boys are doing ok for now. I dont mean to alarm you but I also get the throat clearing, cough and panic when I react and my throat is swelling. If he isnt wheezing it might be  mast cell reaction, just watch him closely then and ask him if he is ok, make him be specific of how he is feeling. Another thing, I dont mean to be a worry wart but IF this is mast cell related with any of your boys.. do you think its safe to send them off where you dont know what they will be exposed to or if the adults there know what to look for and how to treat it? I dont mean to scare you, Im just over protective with my kids (when younger) and Id rather your boys be safe. Ask their DR what they think about summer camp. Hugs to you and the boys, Ramona

Title: Re: My Son's Story Post by judy on 05/09/11 at 16:55:06 Hi everyone,                   Thanks for your comments. Jarrod did not go to camp, still sick, worse, got a virus thats been going through the house so I dare say thats stirred his mast cells up again. Once before  this has been started by a virus and it went on forever.He's so dissapointed he didn't get to go on camp. This is a school camp for a week. Jarrod throat clears constantly everyday , gets worse sometimes during an attack. I cant wait to get  the tryptase result. Thanks for your input. Ive been really studying the MCAD and Monoclonal one. There is so much to learn Isn't there.Iv'e  read something  that Lisa wrote about the monoclonal one, being they thought those people had a foot in both doors. Sm and MCAD, I wonder if thats what Jarrod has. As to my 8 yr old son, he caught the virus and we have notices his skin that was always put down as excema, these spots came out overnight some with scabs and some that look like raw skin. we took photos. Jarrod himself said they looked like chickenpox, well that rang a bell with me about urticaria pigmentosa. I wonder if I could get someone to do a biopsy, and if that was posittive , they might actually take more notice about Jarrod then. Just a thought. Josie, glad youre out of hospital. I know what its like to go for so long, I end up counting the days. Iv'e always said this is like watching a train wreck in slow motion, we know its going to happen but we just dont know when , and we sit back and watch it. Anyway let you all know on tryptase Judy

Title: Re: My Son's Story Post by judy on 09/10/11 at 00:24:29 Hi everyone,                  Sorry I havent been on for a while. So much has happened. He hasn't really been well since May 1. He no longer goes to school, we are doing distance education at home. We put him back on the antihistamines and we seem to have an improvement. We noticed an instant sucess when we upped the zantac to 1  twice a day, from half twice a day. For a while he has been on these meds. betablockers 3 twice a day 10mg zantac 2 twice a day zyrtec at night 1 10mg telfast 180 1 in the morning singulair 5mg 1  in the morning. Since being on these he has still had reactions but they didn't seem as bad and didn't seem to go as long either. we have now noticed a couple of extra symptoms that we havent had before, which are flushing can be both sides or just one and can go right through to the ear. and also we have one blood pressure reading just slightly over, even though he was on the betablockers. He also tells me that when he eats kiwi fruit or strawberries  (real ripe ones) his tongue tingles. thats all that happens and it goes away by itself. at the start of August we had a skin lesion that appeared on his right thigh, that we had biopsied.That showed a minimal increase in mast cells but are not diagnostic of mastocytosis. up to 20 mast cells/hpf mainly in the deep dermis. I have got a form for the bone marrow biopsy which I have been holding on to. I am after some advice please , I don't know what to do, He came down with severe stomach pain late last night Friday. He does seem worse than he has for a while. I have been told to get this done when he is sick, I am a bit confused about the antihistamines, he had his morning dose this morning (Sat) but I think I will miss tonights, and ring up and book first thing Mon morning.I don't think it takes that long to get in. I don't know whether to get the bone marrow done or wait for a bigger reaction, because we just so want a diagnosis so bad. Will anything show up if he is not reacting.His symptoms are at the moment , real bad tummy pain, bit flushed and malaise, the usual no energy and he is squinting so much these days. This does seem to be the biggest reaction for a while since being on the antihistamines, if I wanted a worse one I think I would have to take him off them beforehand. hoping this all makes sense. The antihistamines must be doing something because when we took him off them for a while doing the skin biopsy, he asked for them back again. Judy

Title: Re: My Son's Story Post by DeborahW, Founder on 09/10/11 at 02:25:45 I am so sorry that I don't know your story, but I have 2 questions for you: aren't betablockers for mast cell people dangerous? Next question: what doc do you see? Is it one of the Boston docs? Generally we never want to go off histamine blockers for testing, and it is apparent that your son is much better when taking his meds. How old is he? It is definitely drastic when you need to drop out of school and, of course, heartbreaking to have to do so. Therefore, (pretending this was me and my son was the mast cell patient), I would be thinking that this is simply not an option and that I need to find that doctor somewhere on this planet who can help him and get him back to leading as normal a life as possible. I guess that was more than 2 questions....

Title: Re: My Son's Story Post by Joan on 09/10/11 at 12:28:33 Hi Judy, So sorry he's not doing better!  Antihistamines will not affect a bone marrow biopsy, and, in fact, he probably should be on a pre-procedural protocol including his antihistamines and steroids (if he can tolerate them) before the procedure.  I don't know what the child dose for these things would be, but you might be able to find out if you search on: www.mastokids.org   They may have a link to a support group tailored for children with suspected mast cell disorders. They might be able to address the beta blocker issue, but I wouldn't take him off any medication without him seeing a doctor first.  The problem with beta blockers is that they can make a severe reaction harder to treat, should one arise. To be safe, since he's had some tingling from berries, I would not give them to him at all.  They're a very common food to cause allergic symptoms also can be mast cell triggers.  Have you seen the low histamine diet?  This is the link.  I would follow it carefully with him until you have a diagnosis, and he is more stable. http://www.urticaria.thunderworksinc.com/pages/lowhistamine.htm This diet might be helpful for any lurking food allergies, too.

Title: Re: My Son's Story Post by judy on 09/10/11 at 18:11:09 Hi,    Jarrod is 12 and we are in Australia, we have not found a specialist yet. We have got someone from the masto society in this country helping us with my normal GP. He said with him being sick will be the best for the BMB, they are more active. We have only discovered a couple of foods involved and they said his biggest problems is aeromatic hydrocarbons which makes a lot of sense. He is breathing everything in. I know your concern over the betablockers , but to us they are a godsend. We initially used them to keep the headaches away , but found by accident that they helped everything. Put more color in his cheeks, more bubblier brighter etc. and spread the attacks out further apart. Last year in his bad season he was so much better. It only got worse this year since May his bad time. Every second year is a bad year for him, and this is the bad year. I just feel a bit up in the air about the BMB, I don't know whether to get it done or wait for a bigger reaction. He is fairly sick at the moment , but I have seen him far worse. He never has any energy anymore. He can't concentrate for very long periods either. The decision to pull him out of school was for the best because he was missing so much, and if he did go back he wouldn't last very long before he was sick again. He lasted for 10 days at a time,This keeps him upto date with some work. He is off to secondary school next year , that is why I am anxious for a diagnosis. We have got a meeting this week, to discuss it all. We have left it open that if he is well enough he can go to school and take his work from home with him. For social reasons etc. Thanks Judy

Title: Re: My Son's Story Post by Joan on 09/11/11 at 15:51:55 If anyone else on the forum knows of a reason why a BMB would need to be done while someone is reacting more strongly, please post the info.  I think the mediator levels can be checked with blood tests.   It's always been my impression that it's safer to do a procedure on a potential mast cell disorder patient when the symptoms are well-controlled.  If you don't mind asking the doctor, I'm curious to know what his reasoning is on this, and maybe it will benefit others on the forum. Thanks!

Title: Re: My Son's Story Post by Lisa on 09/12/11 at 04:57:44 Judy, I have NEVER heard of anyone saying this before!!!  And it really makes no sense otherwise we´d all be told to be OFF of our antihistamines and they wouldn´t premedicate us on purpose to get us reacting during the BMB!   There are plenty of us who do react during the BMBs, I´m one, and they have to knock me out due to how reactive I get.  It put me into 2 hours of syncope afterwards and I kept reacting for about 3 weeks!  Did they find any MC aggregates?  NO!   According to Dr. Luis Escribano, if your tryptase is low, which mine is at 4.6ng, the chances of finding the neoplams is also very low.  In order to do so, you would have to go through a very expensive and very special flow cytometry process which can be done at only 4 labs in the world.  This process does a very special enriching of the mast cells and only then are they able to see them to study them.  So, based upon your son´s tryptase levels, you will NOT find those mast cells! Does that mean you should not do the bone marrow biopsy?  NO!   If your doctors are looking specifically for Systemic Mastocytosis, then no, you should not do the biopsy and only do it based upon the tryptase levels.  However, if you are talking about the other forms of masto, then, due to how reactive your son is, I´d say yes.  The reason why is because there is a great deal that can be learned by studying the bone marrow and it can reveal what is going on with your son.   In my case, I was diagnosed as MCAS based upon my bone marrow as well as the other biopsies we´ve got.  We couldn´t rely upon my tryptase and we even cancelled another planned BMB because we were going to try the enriched flow cytometry to see if we could find those MCs but Dr. Escribano felt my tryptase being so low made it not worth the investment.   However, it was very worthwhile for the other pathological changes that were found are only found in mastocytosis and this indicator along with the slightly raised but normal tryptase as well as the elevated histamine levels ended up PROVING that yes, I do have a mast cell disorder.  Pinning down the exact form to my doctors is interesting only on an academic level for we know what we´re working with now and how to treat it and really, Judy, that´s all that really matters, isn´t it? Judy, haven´t you been in contact with Dr. Escribano as well?  I think that this is a question you should pose to him, for I don´t think that person who told you is correct.  If he is, then I´m one who would appreciate an authority´s confirmation of it!   I hope this helps! Lisa Ps - Joan is 100% correct!!  Don´t stop those antihistamines!  If your son is as sick as he is, you could put him into serious danger by not having been properly medicated prior to that exam.  You need the REMA protocols that we have here on the site and to have him properly pre-medicated prior to that and any procedure, Judy otherwise you put him into serious risk if he is indeed a masto patient!   Judy, we all know how desperate we can get for answers and a diagnosis, but don´t put that as a priority over his safety.  What use will be a diagnosis if in the process of getting it he ends up either dying or having serious damage happen in the process?  I had a doctor pull me up short with this very argument and it made me realize some very important things.  He was 100% right!!!

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