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http://mastcelldisorders.wallack.us/yabb/YaBB.pl Mast cell disorder children >> Parents of mast cell disorder children >> Story of my teenaged son http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1298263817 Message started by ruth on 02/20/11 at 16:50:17

Title: Story of my teenaged son
Post by ruth on 02/20/11 at 16:50:17

I have been lurking around this forum for a couple of months now, asking occasional questions, and posted a bit of an intro on the old forum, but thought it was time for a summary here. It’s really hard to condense a story into a potted version; when you deal with an unusual, unfathomable medical picture there are so many details that might be relevant. And to complicate it further I have my own history of allergies but in recent years seem to have some GI episodes that also have me wondering. However for now I will start with my son who is 14 years old and has been battling various symptoms for many years. He keeps his head above water generally and has learnt to just put up with a lot, not so unwell that he misses a lot of school or has severe episodes interfering with his life, at the moment, however I do see that his health is not what it should be, and whatever is going on is impacting on him every day. He also puts up with a lot at school, and then comes home and crashes, he hates drawing attention to himself or letting on to anyone how he is feeling. I also worry about how this might progress in future, and would like to be prepared to deal with an escalation if that happens. No one aspect is severe enough, or treatable enough, to warrant much attention from any one doctor to look seriously at his problems, especially when he doesn’t fit their neat categories, and in isolation many of his problems can be dismissed or trivialised, and treated symptomatically, but never quite getting to the bottom of it.

As a baby Cameron had skin problems (severe nappy rash, cradle cap, rashes and flushing) and was an unsettled baby who never slept well. When he was 2 years old, around the same time that he was treated for giardia, he developed eczema (in elbow creases and back of knees), urticaria and angioedema (face and neck). Through childhood he always had sensitive skin, occasional rashes and reactions to things like sunscreens and skin creams, bandaids, and insect bites.

When he was 11 years old he had several major episodes of urticaria and angiodema. He was prescribed cortisone, and zyrtec. Blood tests were negative to common allergens, but IgE was elevated (2687). He was referred to a Dermatologist who carried out skin prick and patch tests, and prescribed Zaditen. Patch tests showed mild positive reaction to Peru Balsam, wool alcohol, and sorbitan esters, and she noticed that he has dermographism, but she felt these results did not explain the severity of his reactions, and referred him on to an Immunologist in March 2008. Full blood tests were performed, looking for markers for autoimmunity and testing for various other things including tryptase. Cameron was well at the time of these tests and had no obvious symptoms. His IgE was 1690, but nothing else remarkable showed up. Since then blood tests have shown similar IgE levels, but nothing much else except ongoing borderline anaemia. He had been experiencing regular headaches, which gradually became more frequent and severe.

In 2009, following another international move, his symptoms returned with a vengeance, particularly migraine and hives/urticaria/angioedema. He was referred to a Neurologist and an Immunologist. An MRI showed nothing and the neurologist had nothing to offer. The Immunologist concluded ‘not allergies’ (because he hasn’t tested positive to any of the common allergens), but had no other advice or direction. Recently he saw a Dermatologist, who, based on previous test results, ruled out Mastocytosis and concluded that it is Atopy (in contradiction to the immunologists ‘not allergy’ conclusion), and that the range of symptoms could all be linked and have mast cell involvement. He summarised it as Atopy and Chronic Urticaria. In fact the mechanism he suggested was basically ‘mast cells behaving badly’, but when I tried to pursue the idea of a MCAD he would not discuss it, I suspect because he doesn’t know about it, and wouldn’t even let me finish my question. He did agree that a trial of regular antihistamines would be a good idea. I am still trying to figure out how critical the difference is between his label versus a MCAD diagnosis.

Alongside the consultations and tests over the last 4 years I have been reading and observing, trying to figure out what is going on, keeping food diaries, etc. Because of his IgE levels we had been very focussed on looking for classic allergies and never finding anything, but in the past 6 months I have shifted my approach, trying to get past that mentality to a new understanding of intolerances and sensitivities, looking for triggers rather than allergens. I have tried to take a low-chemical approach, following guidelines put out by the allergy department of a Sydney hospital, which avoids salicylates, amines and glutamates, as well as food colourings and preservatives, and trying to eliminate known environmental irritants in washing powders, household products, etc. I haven’t done this strictly, but more recently I have concentrated on the low histamine aspect, as well as the additives. He does seem to have been better lately, but there are so many other factors to consider. The things I suspect are his most obvious triggers include high histamine foods like tomatoes, strawberries and oranges, food colourings and maybe preservatives, heat, exercise, infections, stress, cold.

Here is a summary of his symptoms over the years, all of which still occur either constantly or intermittently :
Skin : Urticaria, hives, angiodema, eczema; flushing (ears regularly, face when he exercises, even swimming in unheated pool); fine red spotty rash (arms, torso); dermographism; local reaction to insect bites, sunscreen, bandaids, skincare products, cold; severe bruising; prone to tinnea, dandruff, inflamed scalp, inflamed gums
Neurological : Constant mild headache; Moderate headache in response to strong odours, bright light or change in light condition, change in temperature, exercise, dehydration, car and bus travel; Migraine, with aura
GI : Bouts of nausea when starting to eat, sometimes leading to vomiting; Nausea and headache when travelling
Misc. : Fatigue; sleep problems; episodic joint pain, chest pain, leg cramps, bloodshot eyes, dry eyes
Fainted once, but often feels faint when exercising
Headaches and rashes appear to have improved with low histamine/low additive diet
Responds well to antihistamines, Zaditen and cortisone
Appears to flare after infections like tinnea, viruses

What I have learnt about mast cells and histamine lately, mostly through this forum (for which I am SO grateful) has helped my understanding significantly and so many things seem to fit when I look at his history and patterns through a MCAD lens. I have a very supportive, encouraging family doctor who is right behind me in pursuing this, but is yet to be really proactive herself, apart from referring me on to specialists, and she admits that she knows nothing about mast cell disorders. I am now feeling like we are on the right track, but I need to be patient and wait until she has a little more knowledge (I am starting to feed her articles and information) so that we can get further towards a definite diagnosis. On one hand I am coming to accept that we are making slow progress towards a likely explanation for his symptoms, on the other hand I am so impatient wanting that definitive diagnosis that would give me more confidence to make informed decisions that will help him lead the healthiest life he can. Lisa has been able to identify a specialist here that will be our next hope, but I want to go to him well prepared to make the most of it – able to show him an accurate picture of Cameron’s status and history that allows him to see clearly what is going on. In the absence of definitive indicators of MCAD, he does seem to have a collection of symptoms that would suggest this is likely – I would be interested in any opinions or observations that would help me clarify that.

Given what I am coming to understand about this, with triggers being so inconsistent and hard to pin down, I am thinking that we might need to focus more on him understanding the signs that he is having a reaction. The itching and migraine are unmistakeable, and our challenge is to head them off before they escalate, but his immediate reactions to exercise, if they are mast cell related, we don’t understand yet at all well - how to distinguish between the ‘normal’ effects of exercise and what might be a sign that he is in fact having a reaction. He doesn’t ever make excuses to get out of doing anything, PE classes included, he prefers to suffer with symptoms that concern me, like feeling faint, and I’m not sure how to approach this, without a clear diagnosis to work with in this context. I don't want to be alarmist about it and make too much of this at school, but I also don't want to wait to find out the hard way (with a major episode in a PE class) that he is actually bordering on something more serious than the doctors have recognised – I would be grateful for any advice about this.

Title: Re: Story of my teenaged son
Post by Sandi on 02/23/11 at 18:55:39

Hello Ruth, you are soooooo correct that your son needs to begin being able to identify his triggers and when he is feeling an episode coming on and to take the proper medication at onset of the symptom to avoid a much more dangerous situation. Possibly could he take one of his antihistamines right before PE, say 30 min to an hour, on that day he takes and extra non drowsy antihistamine in his arsenal. Before I go out and hit the stores grocery shopping I take an extra allegra that morning, and another in the afternoon and crash less often, sometimes it does not help and I end up taking my two emergency benadryl. However I gain control and am able to manage myself rather than not medicating and ending up vomiting, with severe abdominal pain, diarrhea and going to the ER from the store! So yes you are correct he's got to become aware. Excellent job on your eliminating foods and colorings etc. Keep the awareness up and things will begin to register. There is always more than one variety of every food out there. On the Non masto topic has your son had an MRI to test for an AVM? I know he had an MRI, so maybe he's in the clear, but it may be worth another look. A lot of us do get migranes/headaches, I've found triggers to them and do pretty well now since I've eliminated foods etc. Now I only get say one or two a month and much less in severity, in comparison to non stop before. Now where I was going, my brother had also suffered w headaches/migranes since early adulthood, since I his sister had them, docs kept brushing it off as genetic, well they continued, and one day one became unbearable enough to go to the ER, he was on pretty strong migrane meds as a daily routine by then, the ER was going to blow him off and thank god one doc realized how much pain he was truly in and did a CT and they found an AVM and it was bleeding but had not totally ruptured yet, they had to do emergency brain surgery, it was severe and he was a miracle he'd survived. So an AVM is worth an exploration just to rule out. Major Kudos to all the work you've been doing to figure out what it is that your son is suffering from. I so get your comment , It's hard to condense a story into a potted version when you deal with........ You just don't even know where to start with the "story" or on the "answer" side! Everything is so in depth and situational! It's crazy. I found that, when I was preparing to go to my latest specialist. You don't know where to begin any longer, the reactions depend upon the irritant and vary in severity. I'd always started from the onset of the severe symptoms and now at 43 I've decided to reverse my information. Doctors glaze very quickly and I've always tried to stay condensed but geeze there's a lot going on here! Your sons age doesn't help either, those teenage hormones and other growth issues are probably escalating his symptoms. It's late and I was just re reading all of the information you posted, I've not addressed a lot I wanted to, the brain is no longer there! You are so correct that the doctor is absolutely defining a Mast Cell disorder in your sons diagnosis yet just calling it mast cells behaving badly. .... arrrggghhhh WE are all so very different, does your son tolerate nuts/seeds? Those products are in tons of foods/lotions etc. Sunflower seed/Safflower is in everything. Also any facial products containing mica cause me allergic conjuctivits there may still be something lurking and you may figure it out soon, eliminate it and get some more control of his symptoms. How are the household molds? Any carpet, windowsills etc that may be aggravating the situation ? Is he on a current schedule of antihistimines? As far as presenting your information to the physician you did a fantastic job right here, categorizing the variety of symptoms together, eliminations etc. You are well organized with your thoughts and I really hope your up and coming appointment will get your son on the road to recovery.
Sandi

Title: Re: Story of my teenaged son
Post by ruth on 02/24/11 at 01:23:37

Thanks for your reply Sandi, and for the encouragement. It is so helpful to get feedback from people here who understand this to verify that I am on the right track, goodness knows I'm not getting much of that from the medical profession yet.

His MRI was clear, and his headaches have generally settled down, he did start having aura recently, but hasn't crashed with a full-blown migraine in a while. His daily mild headache is the same though. I do think the measures we are taking with diet and antihistamines are helping, and it has been cooler lately, but I still feel like we have a long way to go to even a tentative diagnosis. The inconsistency of triggers makes it so hard, and yet it is precisely why I think MCAD fits, and explains his pattern where atopy or allergies don't. Now that I am thinking in terms of triggers I am working on the environmental things like dust mite, molds etc (which he tested negative for on allergy testing, so I hadn't been too vigilant about them before). We are in a fairly clean new apartment, but the one thing we are stuck with is aircon, and mold in parts of the units that can't be reached, not sure what I can do about that.

The exercise trigger is my biggest concern at the moment, I would really like to find a way to figure out whether he is showing definite signs of a reaction. He had another bad session today, close to fainting again, doing track and field outside in the sun. It seems he felt worst at the end of the session, not while he was actually running the 1500 or the 200 sprint, but after some field events at the end of it all. I am going to make a time to talk to his PE teacher and see what we can do to try to understand what's going on, maybe look at monitoring his BP and HR. Anything else that would be red flags for a degranulation mechanism?

Title: Re: Story of my teenaged son
Post by Josie on 04/12/11 at 10:44:03

Hi Ruth , i don't know if the exercise problem is better . The dizziness is a late sign . if he can have a pen and paper out there and write down anything that happens . As I have found my early signs this way ;-)

I have read through your story . How did the immunologist exclude mastocytosis and did he consider mcad ?

many hugs
Jose

Title: Re: Story of my teenaged son
Post by ruth on 04/12/11 at 12:20:27

Hi Josie,

Cam is somewhat stable at the moment, but the ongoing daily symptoms are there as always. He is also talking more about things like the dizziness, which it seems he has experienced a lot, to a milder degree, so I am keeping an eye on that one - blood pressure, postural hypotension? He almost passed out while having treatment for warts recently, extremely painful, but usually he is pretty stoic about pain. He is doing better at the moment generally, taking zantac and zyrtec daily now, and getting better about the low histamine diet and keeping a diary more consistently. We are seeing the GP next week for follow up treatment for his warts so I am going to discuss the dizziness which is more ongoing than I had realised, not just the near-fainting episodes. Another one of those things, Cameron thought it was normal to feel dizzy every time you get out of bed, bend down to pick something up from the floor, stand for any length of time, etc. We have just seen a podiatrist who is making orthotics for him, as he is borderline severe for overpronation. This may help his tolerance for exercise, standing etc. I also need to have his spine checked again, as his doctor questioned scoliosis a while back, need to follow up that one too. Anyone see a pattern emerging here with these other bits and pieces of symptoms?

Mastocytosis was ruled out because of his tryptase which was 4, but it was tested when he wasn't symptomatic, about 4 years ago. At this time I had no clue about any of this, thought we were still looking for classic allergies, and the immunlogist didn't speak English well (or he was just a typical specialist who doesn't tell you much unless you ask), so I didn't really discuss at length what else he was looking for with him then. Now I would have million questions for him, with all that I have learnt since. Recently the new dermatologist also dismissed masto for the same reason, and would not entertain any discussion about anything else, so I won't be seeing him again. I would like to see what a 24-hr urine test would show us, that's probably the next of the tests we should eb asking for.

Thanks for asking Josie, grateful for any suggestions.

Title: Re: Story of my teenaged son
Post by Josie on 04/13/11 at 04:37:09

Hi Ruth ,

I am very glad Cam is more stable ;-) I asked about the writing symptoms down as I have found early medicating at first symptom point , reduces my overall symptom level wether it is a serious scenerio or one that I will go on to flush and nothing more .

I have developed a guide to achieving the personal knowledge of early warning signs and personal and medication management of these . This since I have done this , has also helped me identify triggers , as I am more likely to work it out when i spot the early symptoms as the trigger is often in that moment . I don't delay medicating in searching for triggers , they just show themselves ;-)

It also helps me see increases in reactivity often before the trigger shows for me .

I can send you a copy if you would like it to use with Cam .

My understanding of tryptase is that a normal level in a non symptomatic patient is less than 1nm.

For mastocytosis is needs to be over a 12 in the UK , 20 in US . This is on a sample in an event . Also a change from baseline is also relevent.
So a test in an event is needed to completely rule out mastocytosis .
The other mast cell activation disorders present with tryptase within mastocyosis normal limits - below 12 . Histamine stays in the system longer , so the 24 hour test would be revealing ;-)

The day to day symptoms are still present for me . My med regiemn is helping . I have always been dizzy getting out of bed and leaning forward. I too thought it was me ;-) . My general dizziness is better . It still comes in a biggie , so I have my warning symptoms .

My rash is little red dots on my abdomen , back and lesser so on arms and legs . I have anew one on my hairline and suspect I have them on my scalp . I also have what look like freckles that urticate - red , when I am reacting . These are on my arms , hands , chest , back . I am string with some on my upper legs . How is cam's rash ?

Where are you living now ?
Jose

Title: Re: Story of my teenaged son
Post by Sandi on 04/13/11 at 10:19:39

Hi Ruth, I was just wondering how your son was doing, I really hate the masto discount with tryptase level sooooo old mindset :) But typical!

I've been suffering from dizziness pretty chronically lately, I'm starting to suspect allegra, it is a warning/side effect, theres nothing I can do about it if it is so, I tolerate very little so far as far as meds go, I have a history of adrenal insuffeciency, low potassium, low bp, also hypoglycemia so I'm familiar with dizziness in all of those areas, upon quick standing, hunger etc. This dizziness of late is very frustrating, it may be vascular related I'm having some eye issues too. Hopefully your son can start to be aware of the causes of onset to how he is feeling. Stay fed at regular intervals for blood sugar, and for low bp, no quick moves from a low area to walking, just take your time upon standing etc and it's just a way of life you don't think about. Again I'm really hoping allegra isn't a culprit, If so I will choose not to discontinue it and just adjust my lifestyle. Possilby look into side effects of his current meds and possibly it is one of those.

Title: Dizziness
Post by Joan on 04/13/11 at 10:35:31

Since it's allergy season in the U.S., I wonder about fluid in the ears as a possible cause of dizziness.

Title: dizziness
Post by ruth on 04/13/11 at 12:14:13

Thanks for all the suggestions ladies. It all helps me figure out what I should be looking for and asking my doctor about next.

Joan we aren't in the US, we live in a tropical climate with low pollens generally. He has never shown signs of seasonal allergies, or any upper respiratory symptoms. There has been a lot of rain lately and it's time for our aircon clean and service, so I do wonder about molds with him, moreso than pollens.

Sandi I do think there is a lot in the factors you ran through, low blood suger, as he eats a bit inconsistently and doesn't like to eat in the mornings, hydration is also an ongoing concern so it may be about blood volume. I do think we need to look more at his vascular system. He has only been on current meds for a short time yet the dizziness and other things have been present it seems chronically. He just deals with things as you have said, adjusts how he does things, and assumes it's normal to feel that way. Getting him to think about triggers and connections is tricky, his coping mechanism for all these things is to distract himself and try not to focus on them, and it seems well-learnt. But we're working on it. He also works very hard at not drwaing attention tohimslef, so recording things through the school day, like during a PE class, is not likely to go down well at this point.

Josie he also has the fine red spotty rash all over his abdomen, chest, back and upper arms, a little worse again at the moment I think, but it doesn't seem to itch like the urticaria and angioedema. It's just there. I will have the GP take a look at it next week, add it to the list. Apart from that his skin has been better lately.

Yes, that tryptase thing is frustrating, especially with what some people are now saying about the idea that over 1 is actually not entirely normal and my indicate something. it seems that if you are already battling to get a doctor to recognise something like MCAD then getting them to accept that is even less likely, as the traditional understanding is a much higher elevation and quite clearcut. That 'normal' tryptase is what they rely so heavily on and don't want to loook any further in the masto direction.

Thanks again for your ideas, I'll let you know how the next dr's appointment goes.

Ruth

Title: Re: Story of my teenaged son
Post by Josie on 04/13/11 at 12:34:08

Hi Ruth ,

I understand . I have copy of Dr Castells diagnostic propsals if they would be of help with your doctors .

I understand about not attracting attention ;-) just a thought ;-) It was only when I got to stable dosing that my dizziness went . It now returns in a reaction . Don't lose faith in the right meds sweets.

I suspect my rash is temp , a rare form of uricaria pigmentosa . I will let you know when i get some news . I am expecting it to be biopsied . I see a dermatology specalist general practioner here next week . I noticed you had described , on Cam , a very similar one to mine ;-)

many hugs

Jose

Title: Re: Story of my teenaged son
Post by ruth on 04/13/11 at 17:22:02

Thanks Josie. I think I have the proposed diagnostic criteria, Lisa sent some articles to me a hile back, I have the one from December. I gave it to my doctor, I don't think she has even read it. I will see a different GP at the same clinic, he reviewed the last blood tests over the phone with me as my doctor was away, I was impressed with his approach then, but he didn't know much of the history and there was nothing immediate to deal with. I'll see how we get on next week with him.

Good luck with your next appointments, I really hope there is some progress in the way of tests and results for you.

Ruth

Title: Re: Story of my teenaged son
Post by Sandi on 04/15/11 at 18:35:02

Joan! Yes you are correct in allergies/dizziness vertigo fluid in the ears! I can feel it bigtime as allergy season hits, weirdly a nose spray actually helps me alleviate it. There is a more serious condition called Ménière's disease by DH came down with it, we were able to get it under control and manage it pretty holistically now. A nose spray I tolerate is sinusin by Heel, also similisan's allergy eye, thank God I can use them, keeping the sinuses happy alleviates the ear fluids, we both have tinnutis, but it worsens with the ear fluid buildup, I know someone else with severe ear fluid vertigo also and soon as her sinus' start you have to get on top of it. Stinging Nettles, HAS by Natures Way, the nose spray and eye drops . Benadryl at night to dry the ear canal is pretty much my DH's ritual, also keeping blood sugar in balance, low blood sugar will also make it worse. Most of us can't do most of that! However the antihistimines help dry the canal! I'm planning on testing nasalcrom soon that'd be our number one and I got some of that Zatidor Mike and Ramona were talking about. Just waiting to test.

Title: Re: Story of my teenaged son
Post by Lisa on 04/16/11 at 04:13:10

Sandi, what a WILD idea!! Putting antihistmines directly into your ear canal!!! BUT IT ONLY MAKES SENSE!! What if you go and use the Ketotifen eye drops in your ear canal???!!! THIS would be even better since it's a MC stabilizer!!!!

I'M IN LOVE WITH THIS IDEA!!! YES! IT'S BRILLIANT!! It's like putting the cromulyn in the body lotion to help reduce the itching and antihistamines in lotions too!! But for those of us who CAN'T find these remedies, THIS MAKES PERFECT SENSE!!

Ruth, you can get Ketotifen in liquid form can't you? What about the Ketotifen eye drops? These may indeed help and why not put it into a nasal spray too???? GOSH!!!!

:D

Title: Re: Story of my teenaged son
Post by Josie on 04/16/11 at 06:04:26

Hi Lisa and all

I would urge using the right preparation for the right area as some ingredients in liquid meds for oral dosing , make not make for happy eyes / ears ;-)

many hugs
Jose

Title: Re: Story of my teenaged son
Post by Joan on 04/16/11 at 06:11:51

Lisa, I didn't think Sandi was saying to put something directly into the ear canal, but I see how that could be what she meant.

Sandi, did you mean orally?

Yes, I agree with Josie. I would be sure to check with an ENT before putting anything into the ear canal. There could be other things in the meds that could harm or scar the ear drum.

Nasal sprays and oral antihistamines are what my ENT recommended. It didn't help the tinnitus, but my ears feel less clogged.

Title: Re: Story of my teenaged son
Post by ruth on 04/16/11 at 15:33:39

Thanks for all the ideas. Still can't quite figure some of this out, I do think the dizziness he experiences is related to blood pressure rather than vertigo. Maybe dizziness is the wrong way to describe it, it's an ongoing challenge to help him identify and describe what he is feeling.

My mother has Menieres, I have tinnitus, and I was treated for vertigo a few years ago by a kinestherapist (that was in Belgium, not sure what it translates into in English). He only mentioned the tinnitus recently, so I'm not sure how often it is happenning. It's one of those weird things that you learn to ignore, and I have enough trouble getting him to talk about how he is feeling.

He is having a lot of trouble with bloodshot eyes, one in particualr, at the moment, flaring up repeatedly. I will ask about eyedrops next week, I know we can get ketotifen eye drops here, but not the oral medication.

Title: Re: Story of my teenaged son
Post by Josie on 04/17/11 at 00:04:18

Hi Ruth ,

I am sure you mentioned the tinnitus before ;-) I get it as an early sign , it goes away with anti histamines ;-)

I will let you know what my rash is felt to be ;-) Its spreading . A new dot on my thumb this morning .

If he feels happy talking online I would be happy for him to have my facebook as the chat is a very good way of he chatting without feeling he has to continue and it gives him safety of disatnce . I will also happily copy all converstaions to you , so you know what is being discussed . Just a thought ;-)

many hugs
Jose

Title: Re: Story of my teenaged son
Post by ruth on 04/17/11 at 01:23:05

Thanks Josie for your offer, that's kind of you. I think if he had a diagnosis he might be amenable to some sort of online support, even just reading some other people's stories, but for now I don't think he would feel comfortable with it. I am also still trying to walk that fine line of letting him just get on with being a teenager, and not allow his health to dominate life. When I back off a bit I find he is more inclined to come to me with things he has noticed, when the moment is right for him.

Title: Re: Story of my teenaged son
Post by Josie on 04/17/11 at 03:38:10

Hi Ruth ,

I understand ;-) its a fine line for all of us . Needing to talk but wanting to get on with things . The offer is there ;-) if he feels having an outside person who understands something he wants ;-)

Jose

Title: Re: Story of my teenaged son
Post by Joan on 04/17/11 at 18:00:06

I don't know where you are, but in the U.S., Zaditor (ketotifen) eye drops are over the counter. I've seen them at Walgreens.

Title: Re: Story of my teenaged son
Post by ruth on 04/17/11 at 19:44:39

Thanks Joan. I'm in Singapore, I know I can get them from my doctor (doctors dispense medications etc here, probably questionable for ethical reasons but it's convenient not to have to make a trip to the pharmacy). I will also check our local chemist, they may be OTC. Out of curiousity, do you know if they have only a localised effect (on the eyes) or if some would be absorbed into the blood stream and maybe have a little systemic effect?

Title: Re: Story of my teenaged son
Post by Josie on 04/18/11 at 00:14:00

Hi Ruth ,

The topical treatments of ketiofen and gastrocrom do have some absorbtion . Nasalcrom in particular is a good route as when it is taken orally a large amount in processed out of the blood in the first pass through the liver . The blood from the stomach goes there next .

So in real terms , the dose given nasally is not far short of the oral dose when the blood gets to the tissues .

The oral route is good for bowel problems .

many hugs
Jose

Title: Re: Chasing Shadows
Post by ruth on 04/21/11 at 14:07:04

I've been posting on Judy's thread but bringing my comments here again so as to leave that conversation to get back to judy's son and his story. I had a couple of lightbulb moments yesterday, well maybe tealights, not earthshattering but thoughts that help me persist in thi frustrating jrney. one very cocnrete idea I had, not radical at all, but will help for us.

Cameron has only just gone onto regular medications recently, up ntil now he has taken meds for symtpom releif as required, except after some of his very bad episodeds a few years ago. He's pretty good now about taking them morning and night, but every so often he forgets, and goes a couple of days without any, and it's only a few days later I will realise. He hates talking about how he is feeling, hates focussing on his symtpoms, and as a teenaged boy doesn't like me quizzing him and checking up on him. And ususally when I ask he has had them and it annoys him to think that I don't trust him or soemthing. I am going to get one of those weekly medication boxes, with little boxes for each day to sort the tablets into. I had always thought they were just for old people with memory problems and dementia, but it will actually be a good prompt for him, and more importantly I can check whether he has taken them without having to ask him and annoy him. Simple and obvious, but took me a while to think of it.

The other thing I thought about yesterday is shadows. I am thinking this 'condition' that causes all the things he feels, whatever it is, is castin a shadow - that's all we can see for now, the shadow. To me this shadow looks an awful lot like it's being cast by a MCAD, it looks just like the shadow it would cast, but until we can get a look at the actual entity casting that shadow we can't be certain that's what it is. Sometimes it's cloudy and the shadow becomes a bit indistinct or disappears altogether, and I find myself wondering whether I imagined it, only to have it reappear quite clearly. So when I find myself thinking I am chasing shadows, which is how this fees often, I am, but that doesn't mean it's a waste of time, I just having to keep looking for the '3D reality' casting that shadow and know that I'm not imagining it. I also have to remember that while we only see the shadow, other things can cast a shadow that looks very similar if not identical, and we have to stay open to that.

Title: Re: Story of my teenaged son
Post by judy on 04/21/11 at 18:37:30

Hi Ruth,
Yes that tryptsase thing is a problem, we have an abnormal result 6 times but none of them have been taken in that few hours. Jarrods range from 2.5 - 3.7. I have now got a form to get this done at emergency when he has an attack. It was hard to get because his are all at night. In a way I cant wait for a next attack so we can get that test (isnt that awful) but I just want a diagnosis. I believe a diagnosis will go a long way in the way we are being treated at the moment.
Was cameron a happy baby, Jarrod was always screaming in the first 3 months. Some days from 3pm until about 10 pm he wouldnt shut up.
But then It was summer then and a very hot summer it was too.
Jarrod is very sensitive to touch on his head, my hairdresser seems to notice this, it can be very mild or really bad. He also has this very distinct smell on his scalp. Everyone can smell it except my doctor who seems to have blinkers on, makes excuses for a lot. It seems to be the same smell we all have except stronger. Thank god you can only smell it when really close.

anyway take care
Judy

Title: Re: Story of my teenaged son
Post by ruth on 04/22/11 at 02:32:30

Hi Judy,

For Cameron I would really like to have the 24hr urine test, but so far it hasn't been offered, and I haven't pushed it, yet. I think the serum tryptase being within range has thrown them off but I would liek toknow what his histamine levels would show, as he is constantly itchy. He wasn't a really unhappy baby, not the screaming for hours type of unhappy, but probably irritable, and has always been prone to having a short fuse as a child. I think he had a bit of a reflux problem, and wasn't too bad as long as I held him. I even sometimes found myself sleeping on the couch holding him, so that I could keep him upright, he would sleep that way but not lying down. My other 2 are pretty placid in nature, but Cameron was much more volatile and inclined to angry outbursts. We have had a lot of that over the last few years, which I put down to hormones, but over the last few months he has been really good - could be the hormones settling, but I also wonder if the change in diet and generally better health with less severe reactions has helped.

The sensitive scalp thing is interesting, Cameron for many years couldn't tolerate the hairdresser using the clippers, something about the feel of it on his neck. He tolerates it now, but he is gernerally sensitive to touch. He says he is always itchy. Yesterday I ran my hand over his upper arm and he reacted and said just touching it makes him itch.

Title: Re: Story of my teenaged son
Post by judy on 04/23/11 at 02:42:25

Hi Ruth,
I was reading about your son not wanting the attention. Jarrod is like that too, he hates any attention and wouldnt tell teachers if he did become ill. I find out about a lot of things later like that so called anaphlaxis thing.I found out after the 3rd episod like this. He just had blood test on an extremely hot day, we were cooking tea and he came up to us and said I need water now, with a hoarse voice ,clutching his throat , said he was dizzy and other arm on his tummy and squating down. Gave him water , settled down was still dizzy though. When everything was quiet he said You know what happened before thats happened twice before.

Has Cameron got that smell on his head like I described. Jarrod has been sensitive like you said at times too. Hes really flinched sometimes when I touch him on his arms .

Another interesting thing Ive recently thought might be involved is he cant seem to stand things on his stomach. Can't stand wearing jeans, prefers tracksuit pants or something elastic banded, even then he pulls them way down, likde I used to do when I was pregnant. The latest hairdresser appt he couldnt stand that cape around his neck said it was too tight, which it wasnt.

Jarrod always went to to the toilet a lot, just little bits and I thought that was just him. His urine has got this real foul smell sometimes too. When the tryptase came back normal I was absolutely devestated. I finally got my doctor interested enough to read some information. He was the one that ordered the 24hr urine, and we really had hope on this one when I read some other stories on here about the bladder problems. That tryptase , still got hope on that now I found his have never been a 1. It sounds like I want him to have this thing , but I just want a diagnosis. So very frustrated. It does fit in with masto so much. I know what you mean about your doc. My doc still thinks I am a bit nuts, but is usually happy to order tests, whatever I ask for. The latest one I asked for is the C-kit in blood and CD2 and CD25. Bone marrow is better , but no one is willing to one on him. I think hes happy to do that but he has to find out what he is asking for.Fingers crossed.

Jarrod was my naughty child growing up. I always thought it was attention back then, but now hes at school he totally not like that, so wondering if there was more to it.

Jarrod has reacted to a taping we put on one of his lesions before too.

Jarrod got bitten a couple of times on the face by a mosquito when he was 15 months old and his whole face blew up, looked like we bashed him.

He is extemely fidgety, cant sit still, Just got to touch something or pull something apart etc.

This is very interesting comparing stories here isnt it.

I could write a book about everything that has gone on with Jarrod.

Take care
Judy

Title: Re: Story of my teenaged son
Post by ruth on 04/25/11 at 01:22:08

Hi again Judy,

Has Jarrod had allergy testing? If he reacted to a bandaid he may have some allergies. Cameron avoids drawing attention to anything, sat through til the end of a class with visual aura (early warning sign of migraine) before gettnig to his locker for a tablet and water. He deals with his near-fainting rather than let on. I don't know how much of it is not wanting to be seen to be making excuses to get out of things, because he knows other kids do that and how teachers sometimes react. I also wonder if it goes back to the 'helpful' doctor who implied his headaches were attention seeking and that Cameron should just take medication and not tell me about it.

Cameron also always preferred loose, light clothing, and even went through a good part of winter in Europe in shorts and t-shirts. He dislikes hats, and gets irritated by tags on clothing sometimes too. He also gets extremely thirsty at times.

Not sure about the scalp thing, he does have a tendency to oily skin and scalp, and also dandruff, so I assume any odour is to do with that. He also gets red spots often around the hairline, and sometimes turn into pale brown spots after the redness and itching goes away. I have wondered about those, but the doctor barley glanced at them and dismissed it as nothing.

Title: Re: Story of my teenaged son
Post by Sandi on 04/28/11 at 14:09:51

Geeze I just saw this! No I didn't mean antihistimines in the ear canal! Only if they are meant for it. Benadryl oral will dry out the fluid in your inner ear. He had to take it at night for awhile. Just one pill, every night. Made him too sleepy to take in the daytime. Also if you can tolerate stinging nettles, or HAS by Natures way that will help also. And the nasal sprays in the NOSE :) still aid fluid build up elsewhere! Glad we cleared that up.