My daughter’s entire body some swelling on the right side of her face.

My daughter’s entire body at 6:30am. 😢 Along with some swelling on the right side of her face. This was her entire body, even scalp. She’s been battling this since July 2015. She has a follow up visit next Thursday with her pediatric Immunologist at Stanford. We are going to discuss options of XOLAIR. From what I’ve read you shouldn’t be on it longer than one year. Any of you taking it will you share pros & cons? What happens when she goes off of it. Side effects are freaking me out. Very worried Mama.


Discussion


Dani Marie Niemi Following! I’m sorry I can’t help I’m in the same boat. Rest that’s the only advice I can give. Poor thing

JENNIFER SCHLUER ENDER 3 24 hour antihistamines, and 2 benadryl later… hives are still present BUT not as bad. Waiting to hear back from her doctor. I hate this journey for he

Dani Marie Niemi This all started in January for me. I currently have them on my hands right now. I take zyrtec and zantac together in the mornings and then again at night. Been on a steroid didn’t do much of anything but make me gain 25 pounds. Eek. I’m looking into xolair also. Did a biopsy first and I’ll hear back in a week. .They are towards lupus for me. Pretty scary but not as scary as lupus once was before.

JENNIFER SCHLUER ENDER Dani Marie Niemi, this has been a struggle for my daughter since July 2015. Entirely too long. She turns 14 this month. This consumes her whole body some days. Best of luck to you.

BONNIE MEINERTS Xolair is only a band aid. It doesn’t fix the problem but it does help with quality of life. From what I was told you may be required to be on it long term. Xolair does have some scary side effects…cancer being one of them. I know the risks are low but something to keep in mind. Plus you are required to carry an epipen for a full year after the last shot. Hives can be so frustrating. I have done two Xolair shots and stopped and decided to do a diet change. Best of luck!!

MELISSA ANN COATS My allergist at UCSF approved me for Xolair . This was 8 months ago. Too scared to start it! Truthfully- I have heard wonderful positive successful stories but I have also heard horror stories too. I think you have to team up with a specialist you trust and weigh all the options. It is not a easy answer. Hope you find a solution- Xolair or not

JENNIFER SCHLUER ENDER Luckily, we have a great specialist. I’m so worried about long term effects, she’s just a kid .Thank you Melissa Ann Coats

JENNIE LEE HEMPHILL Try a candida free or paleo diet before xolair. Also see a functional health practitioner(chiropractor). Tell them you are interested in an alternative way of healing. It has helped me! One day went cold turkey from all my meds prednisone and about 5 different antihistamines. Started the diet and supplements my dr gave me. I also take a probiotic and quercitine(natural antihistamine). I have been hive free for 3 months. My throat and face use to swell up so bad! Good luck!

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