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

Thursday, April 27, 2017

Spring Clean-Up

I spent the weekend working around the house and more specifically, the backyard deck.  After serving a twenty year cycle of Michigan weathering, the lovely deck had finally given way to something closer to mush than wood.  The dilemma was instant; replace or repair.

Due to the massive influx of financial needs while raising teenagers (oh dear friends, you can not save ENOUGH to help this issue), the answer the ONLY answer was to repair just enough to make it through another (hopeful) five - ten years. Which, if these people of mine do become doctors, will place us smack dab in the middle of PHds.  

With determination to save as much as we could, boards were removed and replaced.  Pieces that could be salvaged were cut and repaired.  Three coats of protective stain was carefully added and the results were indeed beautiful.  A little maintenance, some hard work and a whole lot of time was all the deck really needed.

Since the bulk of the project was mine, I had plenty of time to think back to the last time that we worked on the deck.  Our daughters were little.  I remembered how hard it was to balance the time needed to wash and clean the deck with checking blood sugars and ensuring that lows were far, far away.  I remembered how I could only do a little section before I felt the stress and worry of what was happening with their blood sugars. I remembered feeling a compulsion to have snacks on the ready as though I was preparing for a disaster relief effort.  It felt as though any attempt to do anything except manage T1D was insanely difficult.  I remembered crying and thinking that we should just move to a place where nothing else needed our attention because the T1D monster was such an overwhelming beast.

Yet, it happened.  We got through that point in our lives.  Decks were cleaned and stained while managing blood sugars and supervising little children.  Life was hard but it never stopped us from doing anything that we wanted or needed to do.  We dug deep and continued on, crying a little and complaining to each other and yet, reaching our goals.

Some of my closest friends that had walked the T1D journey before we arrived had explained this phenomenon to me.  They had shared that one day, it would be easier.  I never really knew if I could believe them. However, it is true.  With each age and stage of T1D, life does change and it does get easier.  If you are raising little ones with T1D, I can assure you that one day, the stress of repairing or replacing will possibly outweigh the stress over checking blood sugars.

In fact, you may even find yourself longing for a little one that ensures that you take a break and enjoy a snack of a little peanut-butter and jelly sandwich too.


Monday, April 17, 2017

Middle of the Night Alarms

I live in Michigan where the weather can be a mixture of April snow (two weeks ago), 80 degree days (two days ago) and seasonal nights.  While my allergies do not love this practice, to me, there is nothing better than opening a window at night and enjoying the first fresh air after a long winter.

Last night, I did just that.  After opening the window and then, tossing a bit as the unfamiliar noises became familiar again (why does a chirping bird sound louder than a dryer tumbling tennis shoes??), I finally drifted into a deep sleep.  And to be clear, this moment of sleep is so fantastic, that I feel completely calm and relaxed, even on a eve of a very busy week.

Well, as the law of parenting with T1D happens, sleep is just not meant to be.

Suddenly, a deafening scream shot me straight out of bed.  Panicked, I raced into our youngest daughter's bedroom, opened her phone to check the CGM and at the same time checked her little finger with the meter.  124 mg/dl.

Shoot.  Wrong child. In our world, it is a 50/50 guess when you are completely out of it and forget to check your own phone before running down the hall.

Swiftly walking into our oldest daughter's room, I repeated the same series of steps and again, a great but slightly surprising number shot back, 178 mg/dl.  What in the heck was that noise??

Thinking I imagined the noise, I tiredly crawled back into bed, checking my phone to ensure the volume was on and tried to fall back to sleep again.

The scream came again and this time it brought along a series of shrieks and crying.  Sounding almost like a baby, I worriedly again hopped out of bed but this time, went straight to window.  Ridiculously peering out but in the dark, knowing that looking for anything, and really a baby??? - how would that even be possible.

The sounds didn't last too long and eventually my tired brain sorted out the reality that it was most likely a coyote, and well, probably a mating coyote at that.

However, for everyone that finds it easy to sleep through CGM alarms, might I suggest this to be a new sound for both Dexcom and Medtronic?  Guaranteed there will be no sleeping in!