Monday, April 4, 2016

The Return of Ellie Bellie Bear : Updates all around

Two months!  Yes, I have been gone for 2 months, but that is because we have been busy.  Both a good busy and a crazy busy!

I'll start off with Ellie is doing very well. Since Bear had her airway surgery back in November for sleep apnea (lingual tonsillectomy and glossectomy), we have seen progress in various areas of development.   We believe that is because her sleep quality has improved because prior to her surgery, Ellie maintaining oxygen saturations at 80% while sleeping.  Normal is 98-100%.  This means that her brain was not getting enough oxygen, which obviously leads to several health issues.

Since her surgery, Ellie has gained nearly 2 lbs and has grown in height!  Happy dance!  Her sleep pulmologist theorized that part of Ellie's failure-to-thrive was related to her apnea.  Unfortunately, she is still quite underweight each pound is a battle - to  gain and maintain - as her GI issues also play a role.

This brings me to speech!  I kid you not, remove the lingual tonsils, de-bulk her tongue and Poof!  the child is trying to formulate more words.  This child is cursing like a sailor.  Yep, she takes after me.  I knew I should have curbed my cussing around her!

A typical Ellie conversation: (please note that the Bear does not know how to modulate her voice so it is all practically shouting)

Ellie: F*ck!  F*ck!  F*CK!
Me: You want to ride in the TRUCK?
Ellie:  F*ck *ss! [Truck Yes]

In a restaurant:
Ellie: F*ck F*ck F*ck
Me: What?!  What?!  I see no truck.
Ellie: F*ck (signs fork)
Me: Oh you want a FORK!
Ellie: *ss

I'd love to tell you all that I am embarrassed by her crud words, but really, I struggle not to laugh.  It is funny. She is trying so very hard and I am proud of her.  I just loudly repeat back what she is trying to say so that the people around me recognize that my kiddo is really a "polite little angle". *snort*

GI Issues / Upper Endoscopy Results:

Well goodness, I left you all hanging with the upper endoscopy and ruling out celiacs and whatnot.  You know how you go in expecting to find something, but instead come across something different?  That is Ellie.

The gastroenterologist took 7 biopsies from Ellie's upper GI tract - esophagus, stomach, duodenum (upper portion of the small intestine).  Celiac's disease, lactose intolerance, and H. pylori were all officially ruled out.  He did, however, find marked inflammation of the esophagus and stomach.  He has no explanation for this other than perhaps it is lingering gastritis from a prior infection or maybe a side effect one of her medications.

Here's my thought - July 2014, Ellie stopped eating.  Just stopped.  She was taking in approximately 300 calories a day.  She would get a bit better and then her appetite would disappear.  In July of this past year, we started her on Periactin, which is an antihistamine that also works as an appetite stimulant.  Fun Fact: antihistamines decrease the release of histamine.  Histamine regulates the release of gastric juice.  As a result, antihistamines (such as benadryl, Periactin, Zyrtec) can help with nausea.

Anyway, my thought is that The Bear's esophageo-gastritis started back in July 2014.  That her inflammation was so bad that it hurt to eat. So, she basically stopped and then lost a lot of weight.  Nonetheless, she is on Protonix, a proton pump inhibitor, which is used to treat reflux and ulcers.  This will allow her stomach and esophagus to heal.  She has just one more month on the Protonix and then we shall see how does.  We have several GI appointments coming up with 2 different doctors as Ellie is still battling severe constipation and we have plans to do more extensive testing come June.

Semi-related to GI, for the past 5 days, Ellie has been peeing 2-3 x day.  This is a marked improvement over her peeing every 24 hours.  Like her urologist, I do believe the constipation does contribute to the urinary retention.  Yet, I do wonder if some of her medications also play a role.  Nonetheless, I am hoping that we can start working on potty training soon because it is time to say good-bye to pull-ups!

Back to sleep - yeah, I know.  I already waxed and waned about the sleep.  Sleep is so important and if Ellie isn't sleeping, no one is sleeping!  Bear decided to return to her old habits of early awakenings for most of late December into February. This was the whole waking up at 2:00am and partying until 7pm that night.  Do you know what sleep deprivation does to a child?  It is like ADHD on steroids.  It is as though I never gave her the Adderall.  She is wild, impulsive, inattentive, and irritable!  There were several phone calls to the sleep pulmonologist and a visit in there as well.  We finally seem to have a handle on her sleep, which has made a world of difference.

Fun Stuff:

Spring Break was a grand ole merry party.  First up, Ellie had a repeat sleep study.  Because we know how to have a great time on spring break!  Her sleep pulmonologist and airway ENT want to see how things are going after her surgery.  Ellie was a rockstar! Oh yes, she fought us tooth and nail with each electrode being placed, but she was able to calm herself down in between.  She also SLEPT!  We do not have the results yet, but I am feeling pretty positive.  Yikes!  I hope that I didn't just jinx everything!

Aside from all these fun medical things going on, Ellie has been enjoying her weekly horse therapy sessions.  She is getting better at guiding her horse using the reigns and saying words.  She had a dance recital last month and actually danced.  She did not run off stage.  She did not try to crowd surf.  She did not try to break dance like last year!  Ellie went with her kindergarten class to the children's museum and did great - meaning she didn't run away from her aides and she played nicely with her classmates.  All in all, even with all of the medical issues that the Bear is experiencing, she is thriving and happy!

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  1. Great update....good to hear that you are seeing some positive changes even if things are still stumping the doctors. I had to laugh about her language....I could care less if Owen uses swear words or not, if he is saying something I would be overjoyed. :)

  2. She's such a doll! Thanks for the update and welcome back!

  3. Your little girl is so beautiful and a blessing from God. Good job being a strong advocate for her. You rock! Don't let anyone Dis her Ability!
    Blessings and hugs

  4. I just wanted to make a quick comment to say GREAT blog!….. I’ll be checking in on a regularly now….Keep up the good work

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  5. Came across your blog randomly, saw that you're battling with the dreaded "stomach/colon inflammation with no known cause," figured I'd suggest something that worked for me when I had stomach pain so bad it sent me to the emergency room: food sensitivity testing! Food sensitivities can develop and change over time, unlike allergies, and are also harder to detect than allergies because they tend to take effect in hours instead of minutes. And sometimes, eating some of one food you're sensitive to will be okay, but eating two different sensitive foods, or too much of the food, will cause a reaction. So it's very difficult to figure out!

    The blood test and diet that I did for my sensitivities was the MRT/LEAP (MRT is the test, LEAP is the diet), but I think there might be even newer and more accurate tests out there now. It's definitely one of those technologies that's getting better and better right now, as it was previously not a very well-understood area of nutrition (and still isn't, to a certain extent-- but we're learning!).

    You can also try to prevent sensitivities by doing a rotation diet where she eats foods from a particular food group for only one day out of every three-- so, Monday is a "wheat day" and an "egg day" and a "yeast day" and you have bread and scrambled eggs on Monday, then no bread or eggs Tuesday or Wednesday. Some foods are more likely to be a culprit for sensitivities than others, too, so just eliminating common causes of food sensitivities (like wheat, eggs, nuts, and milk-- yes, even if you're not lactose-intolerant, you can still have a sensitivity to milk) for a while and seeing if it helps might be a good thing to try. Of course, as a "not exactly neurotypical" person myself, I realize that having diet be a non-constant thing when dealing with Down's may be a lot harder than it sounds... but as soothing as it is to have the same food every day, even if it's healthy food, it can cause sensitivities in the long run!

    It turns out that people with sensitive immune systems are prone to getting their bodies overwhelmed by eating too much of the same thing, so the immune system starts acting up and causing inflammation whenever it detects that food. I tried to be healthy by eating lots of grilled chicken instead of red meat-- and ended up sensitized to chicken because I ate too much chicken too often, and it caused me inflammation and pain instead of good health! And after eating too much raspberry yoghurt, I even became sensitive to raspberries of all things! But after doing a strict diet for a while (which was admittedly miserable), I was able to go back to a relatively normal diet with no more pain. (Although I still can't have Klondike bars or other ice cream with certain emulsifiers in it, and no sodas with Yellow #5, alas.)

    So, I hope that this suggestion may be useful to you or help you narrow down on what might be causing poor Ellie's tummy troubles. A food sensitivity diet may be a pain, but it's better than an enema every week I think! And since you can get testing or just try different things with diet changes, it's relatively easy to test for food sensitivities, and getting much easier to do as a diet now that grocery stores are stocking all kinds of gluten-free and allergen-free foods.

  6. I just came across this post - I think I missed a few. I love the bit with the conversation - hilarious. I'm glad that you're both doing better in some areas.

  7. I'm thrilled things are going so well for you both! I've missed you here & on FB... please let me know when you're in town next so we can catch up. xoxo, k.


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