I am actually forwarding a question via a good friend who is having major issues with her 17 year old son and his increasing reactions to external factors, both pulmonary wise and physical appearance of hives, rather severe, all over is upper torso. They are on more than a fixed income and getting very little help via her VA benefits. The following is our conversation, if you could even just give us the name of someone to turn to before this goes very wrong? Thought this could get lengthy and I don t want to seem pushy but: I m still pulling this up on sites, and naive as pretty much everyone. Okay, so constant body temps as much as is possible helps. *not always doable, but as much as you can* Allergic/Anaphylaxis response to outside stimulus? (Thinking that s the epi pen) So, for day to day and as far as trying something? One thing we always asked people to do back in the day is to keep a journal. Every little thing you did, at, tried, felt, etc. Many factors affect an individual, sometimes what you don t even expect. (Asthma it s self is triggered by both intrinsic and extrinsic triggers, though no one really knows why.) This isn t Asthma, but many of the same receptors seem to be responding. I ve read that those Body Armor shirts and leggings can be helpful for maintaining consistent body temps if he wants to keep doing what he can. There was also another new product, but I can t remember where I saw it. Will get back to you on it when I figure it out. You PUSH and PULL and do whatever you CAN to make someone listen to you about this. I m going to hope someone I know in my web of someone knows more than my simple self. I love you both. Please be well! xo Great idea on the body armor stuff... he likes them too. it s been more of a test it out and see if he gets rashed... so he does little now... we just got on the cyclosporin (and it raised his BP, so they had to put him on BP meds too)... it s not a nice illness for a boy... showering, helping in the garden, any little thing (probably even jacking off) will cause the rash... so far, we stop before he goes anaphylactic (I hover, yes, I do) at least, since his first ER run 2 years ago the allergist has a woman (adult) who is trying a new medicine. if it works for her, he will try it on Dex too... but we had to fight the insurance to get the cyclosporin, and it has helped a ton in the everyday rash... that has helped it... but the activity is still pretty limited Sandi, I d hover like a momma bee if it were one of mine. Just make sure, until something is figured out that you always carry that pen, if not two, as more often than not reactions get worse with each subsequent exposure. You don t want to get into a do or die situation without. he has one in his diabetes pack, which is always with him (epipen) Shesh. I really will look into this further as it needs to be seen. Soon. Not just saying let s see what happens. Ugh. Is he taking any oral steroids? The doc is baffled... he is seeing more of the urticarias... but not as severe as Dex... it definitely affects his quality of life... he home schools, but really has no face time but maybe one weekend a month with friends no steroids, nope... cyclosporine, singulair, and 4 claritin... plus lisinopril for BP now... and of course, his insulins No oral ever or they just tapered them off? none The Singulair is an inhaler,yes? he may have 2 years ago... but i dont remember.... singulair is pill form Well, that s a small version of a steroid to inhibit response. aka montelukast sodium... 10 mg /day Okay. Do I have your permission to forward our conversation? I can t promise anything, but if I can get a friend to look at it, you just never know. If that s okay, please send on what he s currently taking now and what they gave you at first onset. cyclosporine is an immuno suppressant... he takes 100mg/day yes... you can share it His Diabetes will definitly need to factor into anything. yes, it does... i often wonder if it s related... Age and body weight also. it s immune system related... Damn. I feel right back into an RT he is 220 lbs now... 5 8 17 years old Okay, let me see what I can find out. You re doing the right thing and being the best momma ever. I m so proud of you for being you! Chin up! Much love! insulins are novolog (fast acting) per carb intake and Lantis for long lasting control his medical history includes appendectomy.... age 9 Write all of this out. Never too much info. Copy and pasting all the above. he had RSV as a baby too... hospitalized at age 8 mos... clubbed feet bilaterally the kid deserves a superhero cape one oddity... pre birth, they thought he was missing the corpus collosum... but at birth discovered that his r/l lobes were inlarged (1/3 larger than normal) and had hidden the 3rd ventricle... so it s intact, but just weird big head. we joke that he has extra RAM storage... haha ^^ per MRI doubt it has anything to do, unless it s some next generation of species that is less immune to living.... He is trying to figure out what to be when he grows up and this really plays into it... he is considering psychology... or some medical field, like phlebotomy, as hospitals are highly regulated temps he also thinks it would be kewl to wear a name tag that says Dexter, the blood guy ... bwahahah Well, I remember Dexter the scientist from the cartoons my kids used to watch. They loved that his nutty sister shared my name. Hahaha on Dex! Deedee what ave you dun now!?! HAHAHA! He is talking about Dexter, the HBO show... Dex used to call his under the bed area of his captain s bed, his secret laboratory Yea. I watched that one too. Let s stick with the cartoon character for now. lmao One more: Any know allergies? Known that is nope... just himself (he was diagnosed with asthma too, about age 3) I originally thought the bluegreen algae in Dexter lake (where the water was from in Lowell) that made him sick... it was in full bloom but the city said it wasn t in the potable water (it was, but was just at the toxic mark) I suspect that Dex is like the canary in a coal mine... first to react when things are going wrong Chat Conversation End Camera Choose a sticker or emoticon