Monday, June 12, 2017

A Third Autoimmune Diagnosis

It's never easy to hear news that reshapes the view of your life.  It is even more difficult when you are a teenager and the news comes with uncertainty.  Our medical team knows what it is that she is dealing with but there are many variations to the reasons behind it.  Like my grandma would say, "It's about as clear as mud."

If you have been following our story, our youngest daughter is indeed dealing with chronic urticaria.  The type of urticaria that she is dealing with is rare; less than 1% of the population have been diagnosed with this particular type, which is called solar urticaria.  Solar Urticaria is exactly as one might guess, an allergy to the sun.  

In itself,  all types of urticaria are particularly harmful.  Urticaria can be debilitating as it caused raised hives, itchiness, soreness and in our daughter's case with Solar Urticaria, all of the those aforementioned symptoms with the addition of pallor and faintness.  Nothing worse than going outside, and within seconds in the sunshine (or more directly, in any type of UV ray - even on a cloudy day), and suddenly having a case of raised, itchy, painful welts.  Then, upon coming indoors, while waiting for the hives to subside, suddenly feeling like you are going to pass out - all while trying to act normal in front of your family, friends, teachers, coaches, or anywhere that it might happen.  It's awful.  The stress of this happening has been so limiting to our youngest daughter's typical daily life, that she has often refused invites including golfing, just to avoid having a reaction.  

13 year old children should not live this way.  

Once we could pin-point the reason, I began searching for answers.  Thankfully, we have a team of medical providers and an even bigger circle of medical experts from which to draw expertise.  Upon ruling out the obvious, not chemical reactions, not allergies to cosmetics, sunscreens, detergent, food, or pets, we embarked upon a mission to record the reaction.  Incredibly, our youngest was so upset and determined to find answers, that she willingly allowed us to video tape her sitting in the sun.  In minutes, we had all of the footage that we needed.  80% of others are not so lucky.  As we learned at the specialist, most urticaria cases are never fully understood.  

Our original appointment with the pediatric specialist that deals with both endocrine disorders and allergies wasn't to be had until September.  In Michigan, that seemed ridiculously far away due to the long, hot summer at hand, so we were able to be bumped to August and then, asked to be placed on a call-in for next available.  Luck was certainly with us because as of last week, we were seen by the specialist.  

The diagnosis of Chronic Urticaria was confirmed but now, we wait for a host of blood tests to determine why.... if it is systemic or not and is this a case of future autoimmune diseases?  Will we need to seek plasma therapy and start aggressive IVIg therapy in order to stop the influx of immune deficiencies? Or is it tied to her Hashimoto's Thyroiditis and are we seeing a rare 'symptom' expressed as Solar Urticaria?  Is this effect due to low vitamin D levels - both common with patients that are already diagnosed with poly-glandular autoimmunity?

I am hoping it becomes clearer in the weeks to come.  

If you are keeping tabs in this world of numbers, this is the third autoimmune diagnosis for our youngest daughter.  My mind refuses to accept that there could be more.  

She's 13, I keep thinking.  She is just a child. 

More than anything, I want to express my deep thanks to the families that have been reaching out to me.  From Alaska to Florida, so many of you have been kind enough to share your own experiences in seeking answers.  

If anyone is dealing with Solar Urticaria, I can share the name of the doctor that we are seeing as well as the general therapy.  Please consult a provider that is trained before starting any therapy.  In our personal experience, there are layers to care and as of this week, we are using several antihistimines, vitamin d replacement, and ranitidine (helps to increase the antihistimine effectiveness).  If this does not work, we will increase the antihistimine and try that under the guidance of our provider.  Each person is individual and much like T1D, there is no size fits all.  Again, clear as mud.  Except, we can slowly figure it out.  


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