My 13 year old daughter came down with hives over a year ago

My 13 year old daughter came down with hives over a year ago. An allergy specialist put her on Xolair with several different antihistamines and prednisone. The shot worked for 6 months. Her dr took her off from the shot to see how she would react. They were back with a month. During the treatment of the shot she was able to go off all over counter meds.
When the hives came back they were worse than before. They have yet to go away with the Xolair or Allegra this time.
We are currently waiting results on a gluten saliva test. We have seen an immunologist and she was diagnosed with Hashimoto’s Thyroiditis and next to no vitamin D. We then went to the children’s hospital to see an endocrinologist who did not agree with the diagnosis. We are currently treating the vitamin D with 50k units once a week for 12 weeks. We are seeing a new endocrinologist next week. I’m praying to get answers and a form of treatment.
She has always struggled with constipation since she was 5 weeks old. I’m learning more about “leaky gut” and I’m pretty certain she should she a gasternologist.
This is what she looked like before bed last night. Now she can feel her hives coming on before they are there.

Discussion

Gina Erickson How terrible! I feel so sad for her.

Crystal Riehl 13 is far too young to deal with this horrible condition! My heart goes out to you!

Danielle Fetterhoff This may seem weird but become really educated on digestion and what each organ needs and does.

Janna Lindsey I could always fell mine before they popped up. Felt like stinging. Thankfully I have only had a handful of individual hives since January. Off all meds despite allergist’s orders.

Nadi Badi You’re not taking any meds? Nothing at all?

Maggie Maye Oh no, I hate to see children suffering with this .. I hope they figure something out quickly

Donna Bennett Poor child. Worst case of hives I’ve seen.

Samira Ahmed My daughter is the same age and hers have been like this daily since January. She hasn’t had one day without them. It’s terrible!

Lisa Arévalos So sorry your daughter is going through this and she is in my thoughts and prayers. When you see the new endocrinologist, ask for an extension testing in terms of her thyroid. TSH, free T3, free T4, thyroid antibody. Low vitamin D is a symptom of a thyroid issue, along with constipation. Your daughter could have hypothyroidism and Hashimoto’s, yes even thin people can have hypothyroidism. Ask what medications she can take, either synthetic or natural and if their approach with the results are along the lines of optimal vs normal range. I find being in the optimal range is best for me. Still have issues with constipation, therefore, I take magnesium oxide. Hope I was at least a tad helpful and once again, so sorry about your daughter.

Caroline Winter Has your daughter taken montelukast?
My hives and angiodema were out of control last year.
Started on that and I’ve never looked back.
Hope she feels better soon x

Sarah Elizabeth Is that Singulair?’do you take anything else as well?

Caroline Winter Fexofenodine but that did nothing on its own x

Tammy McCullum Omg, poor thing. In so sorry she has to deal with this at such a thing age

Ann Morgan bless her it won’t get rid of the hives but if it works for her it will make them barable, i spray this onto my hives, a paramedic told me about it and it really does work never use anything else , creams don’t work for me if i have a shower spray all over at night go to bed with just sheet or thin blanket and a fan on at night i get a good nights sleep , as for day time shower , spray and then i can get on with most of my day it’s so easy to re apply i keep it in my bag , it cools and stops the itch straight away , hope you find something that works for her soon , if you do try it on a small area 1st as we are all different and you never know xx also im on a wheat gulten free diet i do have small amount each week but it really does help also im on ciclosporin and fexafenadine

Adele Counter Poor thing it’s bad enough adults have to put up with this let alone kids. Disgrace that no research is done for this condition.x

Robin Neil Kratzer God Bless you. I have had this disease for 22 years and just got my Xolair shots yesterday. I can tell you where they are going to be coming up before you see any evidence of them, because I can feel them under my skin tingling and twitching. I’m Praying for you. I take 50,000 Units of Vitamin D twice a week and I’m on 137mcg of Synthroid because, I have Hashimoto’s Thyroiditis. If you were diagnosed with Hashimoto Thyroiditis then get on some Synthroid, because it can cause another form of Hashimoto Encephalopathy that mimics Alzheimer’s. Take care and lots of Prayers. She’s just too young to be going through this!

Rosalyn A Jarrett-Davis Its sad that her doctor took her off Xolair. That’s why my doctor will not take me off Xolair. We are afraid to stop shots because may not work again. I wish doctor would listen to the patient.