Pediatric unknown-autoimmune

Posted by lvolz @lvolz, Sep 10, 2018

I have a sweet 11 year old son. We have been battling chronic uticaria (hives) for the last 5 years. The older he gets the more symptoms and problems we have. As an infant he was unhealthy and saw multiple doctors from
Infectious disease and Gastro to pulmonology, where I eventually as a parent decided to stop because the testing seemed to be endless with no answers and at that point they seemed asthma related in nature and where being maintained by meds.. then about 5 years ago we started having problems with hives, as they continued to happen and get worse we were sent to an allergy specialist, they seem to think it was a common problem and even though I work in a busy pharmacy and met one adult
In my life that had chronic hives, I figured the dr would know.. I was told
It would probably go away when he got a flu or cold and yet 5 years later here we are.. with the last few years adding symptoms like fatigue, dizzy spells, arm numbness and mouth sores and even the occasional bout of cellulitis with bug bites and of course additional stomach problems .. Our allergist didn’t seem to think any additional testing was needed and just recently came across an article even saying hives more than 6 weeks is actually considered and auto immune disease.. never once have I been told this. I recently talked his pediatrician to running some blood work and his sed rate was high as well as his c reactive protein but Ana negative .. we found out that his vitamin d is low and he’s been put on 50,000 units once a week.. I just got a new referral back to gi but I’m wondering if anyone has a suggestion of who else to see to get this whole thing figured out .. he’s 11 and should be able to play without taking a break or go somewhere without antihistamines. He has so many issues for such a young kiddo and I just want answers and I’m concerned about his future without them.. any suggestions on
Figuring this out?? Rheumatology, genetic screening, change his allergy dr and get someone to run immunology type screening..

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

oldkarl | @oldkarl | Sep 10, 2018

@lvolz Hi! I am not too sure whether this will help, but it is a possibility. There is an autoimmune disease which strikes small children, mostly boys I think. It is very similar to some of the Amyloidosis Light Chain stuff. Called "Evans Syndrome". You have described much of it in the note about your boy. It is a terrible disease. I know about it because Mayo and some others have considered that I might have it, or that I have Amyloidosis Gelsolin. And my last name is "Evans".It has been extremely difficult to diagnose, but it is getting easier. The chief diagnostic element seems to be Platelets going down, but I am not an expert. You might read up a bit on it at Mayo or NIH, or Sloan-kettering or wherever. Then do whatever is necessary to check the diagnosis. It was first described by a man named Russell Evans. The platelets can drop practically to nothing, and treatment usually has to do with rebuilding the platelets. Hope for the best. For another look at what it does, you can look at my write-up at https://bit.Ly/1w7j4j8 under Amyloid and Old Karl . It is free, and The symptoms are much the same. A few more things. The "hives" on his skin is probably Macular Skin, which occasionally oozes blood and/or pus. You might also have a dentist check his teeth for cracking or extra rotting.

beryl | @beryl | Sep 10, 2018

My name is Beryl and I have just read your post, I am so sorry for your continuing fight for your son.....
It has got to me a hospital like Mayo Clinic where everyone will discuss your sons promlem and hopefully come up with the right way to go.....good luck

lvolz | @lvolz | Sep 10, 2018

Thank you. We are in Oklahoma and I look to Mayo website a lot when I have questions, so when I saw this I thought maybe someone would have ideas or advice.. but chronic uticaria isn’t even a talk group on here. Fingers crossed !!

John, Volunteer Mentor | @johnbishop | Sep 10, 2018

Hello @lvolz, Welcome to Connect. I am sorry your son is having to deal with so many health problems and not being able to get any diagnosis as to what is going on with his health. I'm hoping others with similar stories can share some suggestions for you. There is a really good discussion on hives that I would recommend reading through and making connections with other members posting about hives and causes.

Groups > Skin Health > Horrible Hives
-- https://connect.mayoclinic.org/discussion/horrible-hives/

Also, I would like to invite other Connect members who have posted about undiagnosed autoimmune diseases to see if they have any suggestions. @lisabeans, @cmtg, @pinkmk, @aman_23_23, @mommaj, @tljam, @whitechinacat, @palscoreen, @terryblink, @pinkstar, @rebo, @v1crew, @jewel8888, @tbeckys, @WendyAnne, @559purplepatty, @atorset, @beff2468, @taterjoy do you have any suggestions you can offer @lvolz

I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: http://mayocl.in/1mtmR63.

I thought this video maybe helpful to let you know you are not alone

What happens when you have a disease doctors can’t diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.
— https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

@lvolz are you able to give us an update when your son meets with the gastrointestinal doctor?

Hope you find some answers soon.

John

oldkarl | @oldkarl | Sep 10, 2018

In reply to @lvolz "Thank you. We are in Oklahoma and I look to Mayo website a lot when I..." + (show)

@lvolz Aha! in Oklahoma you might also contact Dr Ron Orlowski at MD Anderson in Houston. He seems like a very pleasant and knowledgeable fellow.

lvolz | @lvolz | Sep 10, 2018

In reply to @johnbishop "Hello @lvolz, Welcome to Connect. I am sorry your son is having to deal with so..." + (show)

Yes sir I sure will. I noticed in some of the blogs they referred to allergy testing and he has been. Tested negative on all. There is so much info to give and receive .. he currently is on zyrtec 10, and ranitidine 150 in the morning, loratadine 10 at noon if needed, and doxepin and singular at bedtime. Also Flovent for his asthma and now the additional vitamin d. We did try to change him to Allegra in case it was causing drowsiness but the Allegra gave him ticks. Which until I started researching it didn’t even know antihistamines can cause them, thank goodness he hasn’t had problems with his current meds or atarax which he was on before the doxepin

lioness | @lioness | Sep 10, 2018

In reply to @lvolz "Yes sir I sure will. I noticed in some of the blogs they referred to allergy..." + (show)

@ivolz I wish you luck and finding a diagnosis and treatment for your son.

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