Thursday, June 15, 2017

Sometimes The Best Outcome is Not a Cure

Sometimes the best possible news arises in a most non-dramatic fashion.  While I would love to pick up the phone and hear someone shout, "There is a CURE! Go get it!" (and for any particular disease that effects any one of us in this world because I really am not choosy - we NEED more cures!!), today, the message on the other end of the line was just as sweet.

"It is NOT systemic!"

If someone ten years ago would have told me that news like that would bring pure joy to our household, I probably would have nonchalantly shrugged it off.  Ten years ago, after the diagnosis of T1D, I was so hyper focused on finding a cure, that I am sure that settling for anything less than, would have been a huge disappointment.

After this week, I am certain that there are shades of wonderful.  Yesterday's hazy gray has given way to a lovely calm, cool and happy bliss.  Our youngest daughter's health is not being threatened by an over abundance of autoimmune diseases.  Yes, she will have her three and yes, there are no guarantees that more will not appear in the future.  Yes, her third is incurable, although remission is possible.  However, today, that is not her worry.  Today, she will continue her journey into a happy childhood; albeit with T1D, Hashimoto's and Chronic Urticaria.

And that is OK.

Sometimes the best outcome is not a cure.

Today, it is an outcome that is healthier than possible others.





Thank you for the kind Facebook comments.  I am so grateful for a community that supports one another.  My heart is full! 





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.  

xo

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