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!