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.

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

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!!  

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  

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

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....

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