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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
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
Replies to "The gastric symptoms you describe mirror my brother's reaction to Xolair - after several years on..."
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Thanks. That's helpful.
We tried ketotifen again last night one more time and it definitely is the offender. Within a couple hours he was super congested/mucusy and had a rash on his arms. So done with that. Hopefully he will see some improvement with Xolair in a month or two (or at least by month 6).
He is pretty good at all this but still needs a lot of support. He is very motivated to get better but is starting to get discouraged. It will be 2 years next month since all this started after getting vaccinated. I sure wish we could go back in time and not get the vaccines. Then at some point he ended up with COVID and was extremely sick with long covid from Thanksgiving until February. I think we are finally through the worst of it at least. At his point I am not sure how he will function on his own. He is still hoping to go to college but for now he is thinking he will likely need to live at home (at least until things more stable). I just hope college is still in his future. He had wanted to swim in college and that is looking less and less likely the sicker he gets. And even going to college and passing his classes doesn't really seem possible at this point. So that is why it is so important that Xolair works for him. It is devastating to see him face the realities of what his life might look like long term if we don't get this figured out. But fortunately he is very mature and has been pushing through and doing everything he can to get better. Thanks for your thoughts.