My 4 year old has been suffering for 18 months now without a break. She has been on ceterizine the entire time, with bouts of montelukast and chlorophenamine. She has been on circadin for 3 years for sleep.
They have now swapped the chlorophenamine and ceterizine for fexofenadine twice a day for a fortnight which didn’t work – so now have doubled her dose and added ranitidine – still no improvement.
They now want to try ciclosporin – I’ve done some research and why it seems to stop symptoms – by 16 weeks side effects are so severe users stop using it and the CIU comes back with vengeance. Now I can’t find anything out about these ‘side effects’ so was wondering if anyone has personal experience with this drug, or immunosuppressants in general?Attached a picture of the little cutie.
Lauren Elliott Can I ask why she takes circadin? Sorry I have no advice to offer
Kristie Jane She has always been ‘overactive’ and could next shut down. She went 3 days without sleeping once. Even with the meds now it only gets her to sleep but doesn’t keep her asleep. She’s too young for ADD diagnosis but that’s what they suspect x
Lauren Elliott Kristie-Jane Fisher how old is she? My daughters 6 nearly 7 but at 4 was diagnosed with autism ADHD and other things. She also takes circadin xx
Kristie Jane She’s 4. CAHMS chucked her back because CIU and epilepsy is not under control and said until they are under control they won’t touch her 😕 xx
Lauren Elliott Ahh I don’t know then, camhs deal with my daughter now aswell as the community peads but they didn’t see her until she was 5 as they like them to be 6 here before they offer there service. Why did they say add is she not hyperactive?xx
Kristie Jane They said her brain is overactive and suggested ADD and an attachment disorder to her father – she is too caring and compassionate for ADHD apparently . We was lucky to have CAHMS involvement so early but have given us to community peads now until she is 6 but can always refer her back again to them if they want xx.
Lauren Elliott Kristie-Jane Fisher camhs are hit and miss, they have helped us a lot but sadly others they have failed. Hmmm I’ve never heard of that at all. Add is ADHD minus the hyperactivity lol. My daughter is autistic so caring and compassionate can sometimes be tricky for her as she doesn’t understand emotions properly and lacks a bit of empathy. ADHD on the other hand has nothing to do with that. Either way good luck, I hope you get everything sorted xx
Kristie Jane My brother is high functioning so I completely get that. Thank you though xx
Carol Mark Rollo Awwww I’m sorry I can’t help. I can only tell you what my most successful drug combo is.
3 x levocetirizine ,2 x ranitidine ,2 x montelukast, 1 x doxepin.
I hope your wee girl gets relief very soon ❤️
Jessica West When do you take your levocetirizine? I take 5mg at night but have wondered about taking it in the morning too. I take fexofenadine in the morning.
Carol Mark Rollo I take 5mg morning, noon and night. Was on fexofenadine (4 a day) for more than a year and all it did was make me fat and exhausted
KelliJo Mikesell Castleberry I’ve seen you post in the past, and my heart always breaks. I wish I had more advice. I’ve take cellcept, it made me pretty sick for a while. And I was soooooo nervous about the side effects of taking an immunosuppressant drug—but I had reached my breaking point and was desperate. I feel like the cellcept helped but, then my immune system was so suppressed. I was sooooo sick over Christmas:( I was able to start xolair, and I’m now off the cellcept and it seems to be working! Could she qualify for xolair??
Darlene McDonald Please take her to a naturopath. My 7 year old son was treated and essentially hive free in 2 weeks. I also went that route as nothing else worked. I’m living a normal almost hive free life now. I hope she gets better; this is so hard when it’s our children suffering.
Denise Bukantis What ended up working for you and your son?
Darlene McDonald We are both on a very different, individual plan specifically formulated for each of us. One thing I will say though is “Apis” a homeopathic remedy is my godsend and go to. My son has this incorporated into his treatment as well. It has helped many people with urticaria. The pellets are made from crushed honey bees. Google Apis and take a look. It may be a good place to start, however I believe each patient needs to be tested and treated by a professional. Good luck.
Denise Bukantis Darlene McDonald Definitely need to be treated by a professional.. I have heard a lot pertaining to Apis- honey bees Ill take a look and bring the info to my doctor.. Thanks!!!!!
Darlene McDonald You’re welcome. Just a thought. Does your daughter eat a lot of sugar? My son breaks out terribly with sugar. He’s been so much better since really cutting back. So hard to cut it out completely but a kid needs a cookie now and then.
Lori Vetter Tice Aww I feel for her. I don’t have any advice. I’ll keep you in my thoughts and prayer for answers.
Emily Rens Hull I was on cyclosporine and constantly felt exhausted, dizzy, and weak. I was also on an extremely high dosage (400mg 2x daily for a 7 months before it went downhill) it did work well and it took a while for my hives to return.
I’m now on mycophenolate (cellcept) and barely having any hives- it does have reproductive complications though, so not sure if it’s an option for someone so young.
If they are looking at an immunosuppressant do not give your daughter vitamin c without asking a doctor. it boosts the immune system and will actually trigger more histamine production- I took the advice from someone here to try vitamin c and ended up in the hospital after a week because it counter acted my medication & caused me to go into anaphylaxis.
Jane Derham Benton My Daughter was on cyclosporin for 6months before starting Xolair. It worked well for her BUT she Did have side effects. Pain in her hands, feet and knees. Bloods for kidney function fortnightly and BP. She also caught everything going so was always ill and as she works in a school is always in contact with infections. The Drs did not want her to stay on it for long and is now trying Xolair. I feel for you and your daughter it is a miserable condition and I would do anything to take.it away from her
Ann Morgan im on cyclosporine have been over a year changed my life was in remission for 4 months until the doctors couldn’t get the same brand in one of my meds and now im back on the right brand meds that suits me and now trying to get back on track . only side effects ive had is a bit more hair growth , kidneys were a little down for the 1st fe months but have been fine since and finger tips can go warm and tingle if i go from hot to cold to quickly and blood pressure has been higher but not too bad xx
Emily Gonsalves Was the cetirizine working better? If it was, why did they switch? Also, has her vitamin D level been checked? Sometimes vitamin deficiencies can make hives worse. It helps me a lot to supplement vitamin D3. I also supplement an omega complex (omega 3-6-9) which has helped a bit as well.
The antihistamines are tricky because different combinations work better for different people. You kind of have to keep trying until you figure out what works.
Lisa Torres This looks like cholinergic urticaria. Been suffering since I was 5 years old, now 40. By looking at your daughter’s picture, the sweater she is wearing is probably causes her hives to flare at the moment. No medicines have ever been able to control my hives. Just fished my 3rd round of Xolair and no relief. If you would like to message me, we can chat. Your daughter seems flushed from a heat sensation. It could be her clothing, her emotions, a hot shower, or many other factors. This breaks my heart.
Sandy Wade Sweet little face