Thursday, December 9, 2010

Finally, Help in the G.I. Department

We made our first visit to a WONDERFUL pediactric G.I. nurse practioner with Garrett today. First, let me say she is an absolute saint, and I cannot thank her enough for listening, taking my child's situation seriously, and getting things done....FINALLY someone does this!!!

Garrett has been on a stool softener, Miralax, since he began solid foods, which was around 2o months. It produced the desired one stool per day for a very long time, but over the past few months he has slowed way, way, way down to one day of soiling diapers every SEVEN days. Dr. K, our Mitochondrial Disease specialist, recommended for us to go ahead and see a G.I. doctor here rather than wait until we see her in late January with this extreme slow down in Garrett's world. There is one pediatric G.I. clinic in Boise (an hour from our home) with three doctors and one nurse practitioner, and so far 3 moms have HIGHLY recommended the nurse practitioner. I can see why! She was very friendly and had a wonderful manner with Garrett. My boy has seen way too many doctors in his time, so bedside manner is extremely helpful in being able to even touch him. After we talked at length about Garrett's history of reflux, no reflux, who-knows-if-he-still-has reflux, constipation, increased complaints of pain in his tummy, more constipation, and then a rectal exam, she thinks he may have eosinophilic espohagitis, reflux and possibly Celiac Disease. All of this blew me away as he has been tested for EE and Celiac and both were negative. According to the nurse practitioner, looking at Garrett's past labs, he looks very suspicions for EE because the diagnostic criteria for that has changed, and were he to get the same results he had in his last upper G.I. scope, he would be diagnosed with EE. Wow. Then there is the Celiac Disease, and it is frequently hand in hand with EE. And then both of those things contribute to the reflux. Then we talked about the rectal exam. His rectal muscles are in tact fine, but she says he has "mega colon," meaning his colon is so huge he is holding up to 8 days of stool and never empties adequately. SO MUCH TO THINK ABOUT!!

So we have a clean out planned adding tons of laxative to the Miralax schedule to get him all flushed out. Did I mention we are flying to Louisiana Wednesday.....gosh when should I start this??? It will be such a mess!! Also, Tuesday Garrett will have another upper G.I. scope with biopsies to help us get a better idea of the total picture.

We talked about toilet training, and she says not to even try yet. Between this horrible little system of his and his delays, it just isn't fair to think it possible yet. She also thinks that with his delays, we cannot expect toilet training anytime soon.

I left feeling hopeful. We have taken action now, and that is wonderful. Oh, and the guilt....As we were wrapping up our visit, she said that this will all help his behavior because he will feel better. She pointed out that his is distended.....belly looks like an Ethiopian kid on the starving children telethons. His belly is bloated, and she explained that this is from the gas build-up from all the food fermenting in his system..YUCK!!! Also, and this makes me sooooo sad, she said he always hurts and feels bad with these issues. She said that he feels like you or I feel when we have a terrible tummy ache and have to go run to try to sit on the toilet without soiling our clothes....that horrible gassy rumble. You know the one!! Well he ALWAYS feels like that. Shoot, no wonder he is a grump and sometimes just goes nuts!!!

SO that was the visit. Besides that, we went to the children's museum in Boise, or rather my friend Vicky, my kids and her kids went while Garrett and I were with the nurse practitioner. Then after his appointment, we went to Rocky Mountain Pizza for dinner and then to this spectacular display of lights and the botanical gardens. The kiddos loved all of the lights through 3-D looking glasses that turned each light into a star, snowman or another type star. They had a blast!!

Tomorrow is tubing at Bogus Basin ski resort, and then dinner out followed by night at the YMCA climbing rock walls and swimming. Party on!!!



  1. Oh CL, that is wonderful news!!!! Wonderful!! Not that he likely has EE and Celiac but that you now have a name and a plan! And a NP who will listen and help you! Have fun with the cleanout! Lol!!!

  2. I am so glad you got some answers. I am SO familiar with the "FINALLY someone listened and gave me some useful information" feeling. It is so frustrating to know something is wrong and feel so all alone in trying to take care of it. That's where we were for a year after Clara's mito diagnosis.

    I will be praying that all goes well with the "clean out" and that Garrett will get some much needed relief and regularity.

    Blessings to you and your family!

  3. Oh, I pray relief for Garrett is right around the corner. Having an action plan and hope for a pain free little boy...what a true blessing!!!!

  4. Oh, Clara-Leigh,
    I am SO glad that you found an NP who had an idea about what's going on and a plan of what to do, that is great.

    I am sorry that he is in pain all the time, I know exactly what you mean about the guilt and not knowing, since Tucker's GI doc thinks he has pain even though he can not verbally complain about it.

    Good luck with the clean-out, not really the best time to start it when you are about to fly to LA! Maybe during the stay with your inlaws? Then they can help you with the clean up? Sounds like fun family time, right??

    See you soon,

  5. Oh I can so relate to "reflux, no reflux, who-knows-if-he-still-has reflux". At appointments, they keep asking me "is he still on the Ranitidine?" and here I am thinking to myself "ummm...isn't he supposed to be??". How am I supposed to know he might come off the med if his reflux was silent to begin with??? It's like nobody is there to "manage" some of these issues. So anyways after six months of no symptoms (which he never had to begin with), I took him off the med. Shortly afterwards he started to experience nasty symptoms so on the meds he is again.

    Same goes for the constipation. He is on PEG but then I was told to try and wean him off over a six month course. Needless to say, that didn't work after seven day stretches of no poop he is back on the PEG. His belly looks like an that of an Ethiopian's too :(

    In other words, I can SO relate! I am glad you found someone who is listening to YOU and has a plan for Garrett. I can't seem to find anyone who will listen and guide us through his constant constipation issues. Our province, unfortunately, has lost the only pediatric gastroenterologist to what?

    Hugs from Canada,