ruth
Guiding Light
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I Love YaBB 2!
Posts: 208
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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.
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