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My son has hives on his skin and Dr suggests XOLAIR
About Kids & Teens | Last Active: May 5, 2023 | Replies (15)Comment receiving replies
Thank you!
I agree. He also started oral Ketotifen the same week so it is hard to say which it was. He stopped taking the Ketotifen a couple days ago and seems to be improving. Hopefully it was that. This last reaction really sparked GI symptoms. Now, every time he eats he gets super bloated and has bad stomach pain. It is quite miserable. Up until this point it was mostly allergy symptoms, fatigue, brain fog, back pain, occasional headaches, bladder issues, urticaria in response to exercise, spicy foods and warm temperatures/environments.
He does have an allergy doc that is treating him for cholinergic urticaria. I personally am convinced it is MCAS but this allergy doc says it isn't MCAS because his tryptase isn't elevated. He also is on montelukast, cyproheptadine, Pepcid, Vit C, Vit D, quercetin. The usual. When he switched from Claritan (worked better than Zyrect for him) to cyproheptadine he got significantly better, which wasn't too long before adding Xolair and Ketotifen. I am really hoping it's the Ketotifen that made him so much worse.
Replies to "Thank you! I agree. He also started oral Ketotifen the same week so it is hard..."
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The gastric symptoms you describe mirror my brother's reaction to Xolair - after several years on the injections, he now can predict the onset to be 4-8 hours after injection, lasting about 24 hours. Also, he has more food intolerances on Xolair than off it, but he also breathes better on it, so far him the trade-off works.
My concerns regarding your son are due to his age (my daughter is a high school nurse & both my kids had trying medical and learning issues at your son's age.) Teens, especially boys, hate to be "different" or to appear "weak" to their peers.
Is your son at the point in his maturity that he can and will fully participate in his own care and management?
Can he remain compliant with limitations due to his health and medications, even when away from you?
Will he fully disclose all of his concerns and or side effects directly to his care team?
If you have not already done so, I suggest that you begin to turn over these responsibilities to him. Start with a conversation about why this is important, and express your willingness to stand by and help as he progresses.
It is HARD to do this - there will be missteps along the way. You just deal with them, calmly and without blaming, let your child feel the consequences and learn from them. And it is IMPORTANT - he is only a couple years away from adulthood, and society's expectation that he be able to manage. And potentially be on his own at college or elsewhere.
Good luck to both of you as you walk this path to a healthy adulthood for your son.
Sue