Wednesday, September 13, 2017

The Long, Winding Road of Diagnosis

<b>Autumn Path</b> - Other & Nature Background Wallpapers on Desktop ...

It's going to be an early fall.  

The air has been cool the last few weeks and I can already see leaves of russet, gold and orange co-mingling with our evergreens.  I love this time of year and especially enjoy the excitement of autumn with two teenagers in high school.  These are our busy years with school, sports and extracurricular activities and I am trying to savor each happy moment.  

Except for certain rare times in which I would rather experience once and then, tuck far, far, far away into the deep corners of my brain.  Families like ours understand that delicate balance of medical needs with everyday teen needs.  I have said that before and still, I keep trying to find the best angle, the best approach for the best possible overall outcomes.  As we go further into living with Type 1 Diabetes, there is less of a clear path for all of the other concerns that pop up, especially when we are not sure what we are looking for. 

A few weeks ago, both girls had their very first endoscopy appointments.  

Prior to their appointments, we had met with their pediatrician who had noticed various symptoms of weight loss, GI troubles and of course, the new (and oddly, amazingly rare) diagnosis of solar urticaria in our youngest.  Reviewing the symptoms, plus visually examining both girls, she felt it best to refer us to a gastro-intestinal specialist.  The timing was the beginning of school and for the first time in eleven years, I looked at our schedule and decided that if 'kids were going to be kids first', than something had to give - so I cancelled our quarterly endocrinology appointment.  That left me with a bit of guilt and the feeling that I wasn't balancing our world in the way that perhaps it should.  Shouldn't medical needs always be first???? Except this time, in my heart, I knew that wasn't so. The girls have a right to childhood long before having to check in with yet, another specialist.  

The initial blood work examined the possible causation of their symptoms.  Results came back normal with no specific reason as to why they both continued to have tummy issues.  In the meantime, physical symptoms were noticeable and from mid-summer through the procedure earlier this month, we were able to document exactly what was happening with stomach distress.  We were fortunate to take a few nice family vacations and each trip gave my husband and I, the bird's eye view,  into how meal time especially, affected the girls.  Nothing like being on the strip in Hollywood, CA and having to search out restrooms.  It was horrible.  

As this was unfolding, our youngest was not reacting well to the variety of medications that allergy had placed her on for solar urticaria.  I've shared before but both of our girls play competitive golf.  Our youngest began having trouble standing, starting having dizzy moments and felt faint during practice.  To make matters worse, the antihistamines allowed no respite from the hives.  Even with taking a multitude of medicine, she still had daily outbreaks with no relief.  

A good friend living with celiac reached out and shared her story, plus evidence that celiac often brings about skin conditions that may not be recognized as a celiac symptom, but when gluten is removed, clears up.  I explained that our daughter's blood work did not show any antibodies for celiac. However, we shared the thought with the GI doctor and she felt that based on their physical symptoms, we should go ahead and have the girls scoped. Unfortunately, we learned that blood work may be considered both positive and false positive as often, the results are innacurate.  I think of this as clear as mud science.  Our tools are still not perfected in much of medicine.  

The blessing of being busy as a family meant that we had little time to over think the procedure and so on the night before, it wasn't a big deal to either of the girls.  They both had to fast which can be dangerous to people living with T1D, but with our CGM present, we could see blood sugar trends.  I woke up several times during the night to check the CGM and by morning, felt that the girls were in a perfect range.  My husband, taking my relaxed cues, continued his routine to go to work.  Arriving at the hospital,  the girls and I quickly moved back to surgery, met with two separate anesthesiologists, our nurse staff, our gi specialist who was also the surgeon and before long, both girls were prepped and moved into two different OR.  It wasn't until an hour and half later that I was brought into recovery that I realized how foolish it had been not to bring my husband or another adult.  Suddenly, there were two patients in two recovery beds in my charge.  Our team thoughtfully placed their beds end to end and so for the next few hours, I walked back and forth from one daughter to the next. Side Note:  This might go down as one of my craziest parenting moments ever! Do not skimp on adult helpers! 

The GI specialist was able to immediately share her visual findings.  Both girls presented thankfully with no esophageal damage, but did have damage to the gastro lining of the stomach, flattening of the duodenum, along with bleeding, erosions and ulcers.  The tissue samples were sent to pathology and we were told it would be a quick turn-a-round for results.  Based on her findings, we prepared for a celiac diagnosis. 

However, the results came back in a much unexpected way.  Pathology found no Tcell damage, which was consistent with the lack of antibodies within their blood work.  As our GI doctor explained, that didn't mean that the biopsy was 'normal', it just meant that it was not celiac.  Clearly, the girls have damage as well as physical symptoms - yet, modern science hasn't found the pathway to understanding why that is.  Much like a dx of Type One Diabetes, we still do not have a direct causation to why the body has an auto-immune response.  This is again why it is so important to do pediatric and adult research.  We need more answers.

The diagnosis given to both girls is Non-Celiac Gluten Sensitivity (NCGS).  We met with a nutritionist over two days to discuss removing gluten for their diets and how to live safely from gluten exposure.  We learned that it is unclear as to why gluten causes gi issues in some people but that by removing it, their intestinal walls, stomach ulcers and even reflux will often clear completely up and go away.  They may even grow a bit more and see effects like healthier hair and nails.  Best of all, we may have a chance at seeing a marked improvement with our youngest daughter's urticaria.  One full week off gluten and off her five medications and she had less of an outbreak than she did with gluten.  She feels like this is progress. We are hoping for even better outcomes.  

This may be forever or it may be until new medical information comes along (c'mon research!).  We have agreed that the way we are most successful as a family is to ensure that we do everything together. 'One for all and all for one.' 

If you are dealing with any of these issues, please consult your doctor.  The best advice I can give is to surround yourself with a team of medical professionals that continue to help seek medical answers that work for you and your loved ones.  Everyone deserves to live a healthy life!  

Thursday, July 20, 2017

Not Letting T1D Mess Up HER Goals

Our oldest daughter is now driving.  

I'll continue to type while you adjust and let the information sink in.  If you are like me, that may take a moment....driving IS one of the scariest parenting moments. 

Several years ago, another blogger parent shared her own personal driving stories as one by one, her teens living with T1D made the plunge into the world of driving.  I was actually horrified, while also feeling awe and a slight bit of  jealousy - because truthfully - having another driver was definitely needed within our household.  For the record, her young drivers did just fine.  The worst seemed to be the need to stretch out curfew for 'just a few minutes more'.  That seemed very typical of most teenagers and so reading about their experience helped me to relax. Well, mostly.  

And to give you that same gift of relaxation, I want to share this story with you. 

Over the past 1.5 years, thanks to a graduated license, our daughter has learned to navigate her vehicle and her T1D care with ease.  The reality is that as parents, we often focus on the imagined 'worst case scenarios' and fail to see how proficient our young people have become.  It becomes even trickier when you couple in the 'what ifs' of T1D.  Believe me when I tell you, those first few months, we worked hard at ensuring that our daughter had a protocol for caring for T1D.  There is fast-acting glucose in her center console, there is an ID on her seatbelt and her wrist and we heavily discussed the need for testing - not guessing at BG numbers - before she drives.  

But this strategy was not our sole focus.  We also had to teach her how to handle freeways, roundabouts and parallel parking.  My husband, whose own father was a school teacher and driving instructor, was fixated on giving his own child the best defensive driving education that any child could need.  I tease but he had her working my own minivan like it was a tiny sports car.  I can't even do that. 

Yesterday, our daughter drove to one of her final orthodontist appointments.  The visit required a drive of about 20 minutes each way.  In leaving our house, she felt slightly rushed as she was running behind to begin with.  Hopping into the car, she forgot to check her CGM or check her blood glucose through a fingerstick.  I sat in the passenger side, unaware as well.  My mind was more on the impending visit than what she had forgotten.  

Seconds into our drive, she suddenly pulled into a parking lot.  Surprised, I questioned her.  

"Mom, I almost forgot to check my BG.  I want to make sure that I am safe."

With fingers in action at lightening speed, within moments, there was the all-too familiar click, wirrrrrrrrrrrr and Beep!

"205 mg/dl", she happily revealed.  

Back on the road we went and as she drove further she shared, "I don't want to have problems with driving and T1D.  This is too important right now.  I have things that I want to do and I don't want to mess any of it up."  

I bit my lip to keep from further parenting her and just nodded in agreement.  My advice or scolding wasn't needed and if I had shared any of my favorite lectures or opinions, it might have changed the course of what she is planning to do.  

Sometimes, our teens are their own best guide.  We just have to give them the freedom to figure it out. 

Friday, July 7, 2017


Sometimes in the middle of a joyful moment, there is a lull.  The music dims for a split second and I find myself taking in the surroundings like an impartial third party witness.  The girls are happy.  My husband, despite his ever-graying hair, looks relaxed and young again.  And for this moment, no one is thinking about health, medicine or outcomes.  We are just a regular family, enjoying a regular fireworks display on a regular summer evening.

It is lovely.

That is the kind of moment that I am cherishing this summer. Our youngest is still dealing with chronic urticaria - though the hives are NOTHING like they were in the early spring.  Thanks to the multiple antihistamine regimen, the hives look less intense and now appear as a splotchy, blotchy map of redness. When a flare occurs, the itching drives her mad and she has explained that it feels like her skin is both on fire and full of ants.  The feeling is so intense, that it immediately forces a dose of her (new favorite) prescribed hydroxyzine pill.  Minutes later, the effect takes hold and the itching lessens as her skin fades back to her normal pale glow.  I have to tell you though, in the brief time span of watching her struggle, my stress flares to unbelievable heights.  I feel the same itchiness, the same frustration, the same (yes, sometimes) anger at having to deal with this. It is hard on both of us.  I want nothing more than for her to feel good this summer and yet, this is the best we have at the moment, mostly good.

The world of T1D is similar, so this feeling of helplessness in watching a child struggle is not new to any of us.  My role is as a witness to the world of highs and lows.  I see them, I participate in them and worse, I remember each and every one of them. This, my friends, compares little to living through them.  My girls are strong.  So darn strong because somehow, they have made this amazing life happen, all while managing one of the most burdensome autoimmune diseases with little complaint.

I think about that strength; the resiliency that they both have cultivated.  It helps to reframe my thoughts when it feels so out of my control.  I know that they will both thrive.  They just will.  Actually, I should say that they have willed it to be so.

Last week, they won their first golf tournament of the summer junior tour season.  Our oldest placed first and our youngest came in second.  The tournament ran for six hours - incredibly hot, slow and frustratingly l-o-n-g golf.  By the second hole, the girls were backed up to two other three-somes awaiting their own turns.  There was little shade on the course and so, the sun hammered down and within a few minutes, I could see our youngest scratching at her cheeks, then her neck and finally her arms.  Because parents are allowed zero communication with players, we had created a plan ahead of time to keep both Benedryl and her hydroxyzine in her golf bag. Without hesitation, our youngest quickly proceeded to give herself a dosage. She knew what she needed to do and made it happen.

That hole wasn't particularly great as she struggled to regain control of her body, but after taking care of her urticaria, she once again hit her stride... navigating her game AND maintaining her T1D.  In fact, both girls were so good at keeping their blood sugars in check, that not once did I ever feel the need to ask a Ranger or a Judge to step in with carbs from mom.

And so this leads me to the moment that I am in right now.  I'm savouring the life we have.  The understanding that this barrage of autoimmune is not going to hold them back.  They want to be a part of life - not just a witness to it.  And that is the best kind of outcome we could ask for.