Monday, September 8, 2014

Updates all around

*TMI alert: this post will have a bit of a poop discussion.  If you are squeamish about issues of the bowel, please skip that section.

Ellie's GI Update:

A few weeks ago, Ellie had a follow-up appointment with GI.  We discussed how small doses of Miralax cause explosive diarrhea, but she will then suddenly become extremely backed up.  Once she goes 2 days without a BM, she will become resistant to high doses of Miralax + Exlax.  There is no explanation for this.  In fact, 3 GI docs have no clue.  Bear is an enigma.

Currently, we have had a few weeks of very loose stools.  Some are so loose that they run down her leg into her shoes.  They go up the back of her pants and lower part of her shirt.  Several sets of pajamas and clothes have met their untimely demise.  As have 3 sets of boots. The bedroom carpet has been shampooed 5 times.  We now have very clean carpets and I am grateful that we own a carpet shampooer. FYI: Pet Enzyme Cleaner is awesome for human excrement as well.  I am petrified that this will happen at school for all the other kids to see.

Additionally, in one month, Ellie lost nearly 2 lb. The first pound happened in the week between her anorectal manometry and the last bought of constipation.  She was eating.  Then, she stopped for a few days.  For a few weeks after that, she was getting around 400 calories.  A 4 year-old should consume 1,400 calories/day.  Children with Down syndrome have slower metabolism by about 10% unless they are active.  Even still, Bear should have been getting closer to 1,000 calories/day.  She would ask for food and then it would sit there.  She would throw a brownie in the trash and ice cream in the sink! Within the next 3 weeks, Bear lost nearly another pound.

Ellie's GI doc was rather alarmed.  He reviewed her Upper GI from 3 years ago (back when she was Miss Spits-Up-A Lot) and saw that her small intestine had localized WBCs.  This could have been an early sign of celiacs.  Add in the alternating constipation and diarrhea plus the weight loss and there was a suspicious of celiacs disease.  Ellie has been screened in the past for celiacs as this is very common in people with Ds.  Her test was negative.  That being said, it is possible for there to be false negatives.  The true test is an upper GI with a small intestine biopsy.

The GI doc ordered 5 vials worth of blood work--most specific tests for celiacs, IgA stuff, tests that looks for inflammation, another thyroid and Vitamin D, and the usual CBC and metabolic panel.  All tests came back negative.  Chances are with the 2 celiac screens being negative, Ellie most likely does not have celiac disease.  In the meantime, we have been encouraged to feed this child anything, ice cream, desserts, anything with a heavy caloric content.  Of course this goes against the very foods  she willingly eats--berries.

Tragedy: the icing is touching the cake

Two dear friends of mine spoke with me extensively on the phone.  I am forever thankful for their support, prayers, and advice.  We hypothesized that the unstructured summer routine could have been affecting her eating habits.  As it turns out, they were right.  The day school started, Ellie ate some lunch!  Then she would have an afternoon snack and even dinner.  A later dinner, but a dinner nonetheless!  She is now getting close to 800-1,000 calories and so I hope that there will be some weight gain.  Some days are still rough, but I think the structure and peer pressure of classmates eating have triggered something.

My Back & Hamstring Update:

Five weeks ago, I fell and managed to severely strain several areas of my hamstring and obturator externus muscle.  After 2.5 weeks of crutches, I was cleared to walk very very short distances.  My pain was intense.  Both hamstring and back.  The hamstrings, quadriceps, core, and hip flexors help support the back.  By injuring the hamstring and groin muscle, I affected the stabilization of my back. Physical therapy was tough in that I could only do a few exercise because there was a concern that I would further damage my back.  I lost so much strength and mobility of my right leg.  I couldn't drive more than a few miles.  That slight pushing on the gas and brake pedals utilized my hamstring too much.

Left: hamstring & ischial tuberosity
Center: Obturator Externus msucle
Right: Sacroiliac

One week ago I saw my physical rehab doctor.  He told me it was time for a second opinion as my options are exhausted.  Not what I wanted to hear.  He also recommended a steroid shot in my sacroiliac joint [SI] and in the ischial tuberosity bursa [back of the upper thigh].  The shooting nerve pain that I experienced with both shots suggested that there were the inflamed areas causing my intense, debilitating pain.  Sure enough 3 days later, my hamstring pain significantly decreased and today my hamstring is pain -free.  I am able to walk further distances and this week I can start doing squats.  I never thought that I would be so excited about squats!  By the end of next week, I may be able to restart my PiYo workouts which really help my back.  My back still isn't great.   The mornings are okay, but the evenings are horrible.  I still can't drive more than a few miles but, Andrew has been a big help in taking Ellie to therapy and helping out around the house and my mom flew down from St. Louis to help out.

A week ago, I couldn't extend my leg at all.  Progress!

Being unable to workout has been very difficult.  It has been 5 weeks.  The PiYo was one of the main therapies that helped my back.  I have been trying so hard to maintain my healthy lifestyle.  Normally, at this point, I would have given up. Fallen off the wagon.  Returned to my stress-eating ways.  Fortunately, I stocked up on my chocolate shakeology and have been experimenting with various recipes to shake it up a bit (more on this in a future post).  It has prevented me from binging on donuts and ice cream since I have the chocolate flavor.  Amazingly, I have lost an additional 3 pounds in the last 5 weeks and I attribute this to the healthy eating and Shakeology.

I need to get back to this!

As my friend Mary always says "Forward With Hope!"


1 comment:

  1. This is altogether too much excitement! I'm sending healthy, healing thoughts your way…xoxoxo
    (And, boy, do I hear you about the potty issues at school. Yikes).


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