Monday, May 22, 2017

Mystery Hives

Not long ago, just when the weather fully warmed, our youngest daughter ran outside to play a game of basketball.  Moments later, she returned with splotchy, blotchy marks up and down her arms, around her neck and covering her face.  The marks were itchy and later, when not itchy, were sore to the touch.  Her skin was clearly not happy.  A dose of Benedryl, plus a cool shower later, and she seemed back to her typical self.

It happened again playing golf and then later, walking to get an ice cream cone.  No new lotions, no perfumes, nothing different in her diet or even her daily routine.  The only commonality of triggers (that we were able to identify) was that each event happened as she spent time in the sun.  The brighter the sunshine and the longer the time spent in the UV light, the worse her hives became.  Eventually, I was even able to capture an episode on camera.  Towards the end of the video, my voice becomes a bit unsettled as literally, I am watching her skin break into tiny watery blisters as she miserably looks on.  To my horror, there is nothing to prevent this from happening.  All we can do is administer Benedryl after the fact.  This is not an ideal treatment as the Benedryl is making her more tired and irritable at having no energy, despite her wanting to participate in all of the fun things that she loves to do.  This is my child that loves to create, invent, participate and be active.  Nothing ever gets her down... until this.

We have an endocrine appointment scheduled for Friday in which we will discuss the results of a recent blood draw.  Since our youngest has been diagnosed with both T1D and Hashimoto's, I have looked into many research papers in which there is a correlation between chronic hives and autoimmune disorders. One study linked high TSH with hives.  Another cited references to the wacky immunity that already exists and declaring that being allergic to many things is a high probability.  A friend within our hospital directed me to further review Mast Cells and specifically, Mast Cell Disease.  I have spoken off-hand to several trusted providers in hopes of finding that one 'cure' but as of the weekend, the best advice was given by our long time provider.  He suggested adding not only Zyrtec but also, Zantac to her daily vitamins which already include a probiotic, vitamin D and a multi vitamin.

When I have talked about this, several adults that also live with T1d have stepped forward to open up about their experiences with hives.  Not one has had an answer of how they cleared up (or if they ever really did as many have chronic issues which unpredictably flare).  While I am not sure what to do in the case of youngest daughter, I would love to at least gather experiences in a way that hopefully provides a road map to solving the mystery of these hives.

As you all know, golf season is here and for our girls, this is their passion.  I can't imagine sending her out to play under this condition with no relief other than exhaustion after taking an antihistamine.  Poor girl.  She deserves better. Her very first Michigan Junior Amateur is right around the corner, so I am hopeful we can get her some relief before then.  Any help is appreciated.  

#Hives #Type1Diabetes #Thyroid #Chronic


Carrie Ann Nash said...

A little over a year ago my T1D son, (then age 13) had exactly that experience you describe, except he also experienced angioedema. Our allergy specialist did tests that revealed a high level of the marker (?) for autoimmune uticaria. By this time he was on Benadryl, Desloratidine, Zantac (to intensify antihistamines), Hydroxizine PRN, and Singulair. He would have the very same type of watery, huge welt-like hives cover his body, and his genitals, lips, eyes and throat would puff up and stay that way forever. Our local allergist started him on monthly Xolair injections. Xolair is for asthma, but when they started using it for asthma some years ago there was a related decrease in autoimmune uticaria for patients so they fast-tracked it for that purpose as well. It took 8 mos., but Dan's condition is in remission and we have weaned from all of the allergy meds AND stopped the shots. He still has crazy outbreaks once a month or so and takes Benadryl and Hydroxizine right away, but the duration and magnitude of reaction is diminished (and less scary). I hope this is helpful. The effects of these meds on blood sugar was noticeable, but manageable by changing basal programs. Autoimmune uticaria with angioedema is apparently not manageable with corticosteroids because it causes rebound worsening of symptoms, plus corticosteroids play havoc with blood sugar. GOOD LUCK. I can provide the name of the physician for consult if necessary! We are in Fairbanks, Alaska.

Carrie Ann Nash said...
a good article and apparently I have been spelling "urticaria wrong for a year!
Xolair =Omalizumab

Naturally Sweet Sisters said...

Hi Carrie Ann,

Oh my goodness! That's it exactly. She is not seeing any long term swelling (angioedema), the hives go away rapidly, but on this last episode at school, she did remark that she 'felt like passing out'. I assume that is just from the hives. On the endo end, her TSH came back perfectly in range and we were sent to a pediatric allergist at Mott. The timetable is horrible though and the appointment was pushed back until September. I asked for a different location, which put us at Mid-August, still terrible. Friday, we see the endo and I am going to press for quicker timetables. I would love the provider name, if possible. Hoping for relief sooner than August. Could it be provided by a general pediatrician? What was the marker for Autoimmune Urticaria? Also, how did you decide that he was in remission?

Carrie Ann Nash said...

Dr. TImothy Foote at Tanana Valley Clinic, 907-459-3525. I wish I knew the name of the autoimmune (chronic?) urticaria marker, but it was determined by a blood test. Dr. Foote was a general pediatrician for decades and then specialized in allergy/asthma for adults and peds. He is kind of a data nerd and did lots of research regarding the condition in Type 1 people. He was the one who determined Dan was "in remission" (his term), and I am not sure all of the criteria used with the Xolair protocol to know exactly what made him sure of that. He did say that it could return at any time, and it was not necessarily a permanent cure, and that we may need the treatment again in the future. I would push for an emergency appointment as it takes a while for insurance to approve Xolair. Each delivery monthly is one shot in each arm. It has to be sent to the clinic from a specialty pharmacy somewhere in the Lower 48, and then mixed for injection right when you show up at the clinic. Like other allergy shots there is a need to linger in the provider's office for a couple of hours after the injections. It is very expensive, but our doctor indicated that with a Type 1 diagnosis and the positive test for the marker - it was a no-brainer to approve the Xolair... Let me know if there is anything else I can tell you.

Naturally Sweet Sisters said...

Hi Carrie,

Thank you so much! This has been incredibly helpful. We did get an emergency appointment based on the luck of our endo team and not giving up. Everything is almost the same except that we are trying level one of the medication work-up. So far, we are seeing positive results, except we haven't been fully able to get rid of the hives. Instead of raised welts, we are seeing a red, lacey rash that still itches, then, after exposure is gone, hurts. I'm watching this week and if not completely gone, we will try second level which includes stronger antihistimes. Xolair is our third level. We are also running blood tests to see if marker is there.. there is a commonality between patients with thryoid (autoimmunine) and solar urticaria - but we were told that this particular type is rare - like 1%. Crazy. I will let you know as we go. Email me anytime. naturallysweetsisters at gmail dot com.