Celebrating Inchstones: GI appt

Thursday, June 16, 2011

GI appt

So about the GI appt! Is it dairy, is it not dairy?! Is it reflux, is it not reflux? Is it dysmotility?! And what about the tube he keeps pulling out? Did he loose too much weight?

Let's just say I had a lot of questions for the GI NP! I had more to talk about today with GI than I've had in a while! I'd already emailed back and forth so she knew what was coming!!

And can I just say that I'm so thankful for Ayer's Clinic!! The Vandy docs come down and it saves me 6 hours of drive time! The nurses in the clinic are beyond sweet to Asa since they've seen him for 3 1/2 years now!! He can rule the roost if he wants to!

Anyway back to the appt! Asa has lost 4lbs in the last 6 months. While that doesn't sound like a lot when you take into account that he's supposed to be gaining you can see the problem. He went from 40% on the growth chart down to 4%! wow, nearly FTT again! He did NOT need to be at 40% but 4% is too low!

He actually looks pretty good. He is easier to carry around too. But he has stopped sitting up on his own. And forget about trying to get out of bed or even scooting around. These things aren't good if it's from the lack if good nutrition I can help fix that!

Since he can't have Pedisure because of dairy then we are going to try Elecare orally. He'll have at least 2 cups a day plus all his other foods. Hopefully he will drink it from his straw cup and he'll gain weight. If that happens we'll try to do without the Reglan. Maybe what we thought was dymotility was just an allergy. He never had motility testing done. They just tried it and it did help some. If the Elecare, weight and no Reglan works well then we'll talk about taking the tube out!! Not for at least 6 months though!

I'll start the Elecare tomorrow. I'm praying he will drink it. He doesn't and can't eat enough to sustain him. He needs the Elecare! He'll drink it! Right?!?!

4 comments:

Rose-Marie said...: We also had real problems with Pediasure and all things dairy-based when our daughter was younger, and she too lost weight when she should have been gaining. Getting her off dairy/whey-based formulas helped tremendously. I won't go into detail on how it helped her "output"...enough said...

Have you ever considered blending your own tube feedings? The flexibility to give exactly what your child needs is such a gift. Second to having the g-tube placed, this has been the greatest "intervention" in our daughter's life (doesn't it sound weird to think that the same real, healthful food you'd feed your other kids would be looked at as an "intervention?" It seems backwards...). Her general health is amazing, her motility has normalized, reflux is well controlled...we thank the Lord every day for this gift of real food He has made.

I do hope you can steer clear of Reglan. That would definitely be for the best!!!; June 16, 2011 at 1:44 PM
Clarissa said...: Abigail had a horrible reaction to Reglan, we will never go near it again!

Abigail takes EleCare via g-tube only, it is her only nutrition and has done well for her. She was extremely constipated with pediasure and peptamen jr. and goes fine with EleCare now without any help (miralax, or other help)!

To Rose-Marie, how do you get a recipe tailored to your child's needs to make "real food" for tube feedings? We would be interested in that... do we just talk to Abigail's dietician? They have never offered that option to us. Abigail vomits daily and is immobile.

Anyway, Kim, good luck with everything! :); June 16, 2011 at 3:57 PM
~Jana~ said...: Kim, If Asa wont drink Elecare ask your doc about EO28 splash. Its an elemental dairy free formula that comes in three flavors. Its been a lifesaver for us.; June 16, 2011 at 9:53 PM
Rose-Marie said...: Clarissa,

Sorry, I didn't see your question for a couple days.

Yes, I'd recommend talking to your dietician about coming up with a recipe to meet your daughter's needs. Some dieticians are very supportive of home blending and others are leery of it (because it is more work for them than just prescribing a commercial formula).

If your daughter has special dietary needs, the dietician can also help you work around that and still have a balanced diet.

Our daughter's blend varies from day to day, with protein coming from meat/poultry/nuts/eggs/cheese, a variety of fresh veggies and fresh or dried fruits, whole grain cereals and bread, and a splash of oil (usually olive). It comes out to about 30Kcal/oz like most formulas and I give her additiional free water.

If you want more detail, I posted about it here: http://adaptingcreatively.blogspot.com/2011/02/homeblended-foods-for-g-tube.html

Hope that helps!; June 18, 2011 at 11:45 AM

Asa's story

Asa is the 4th and youngest in this family. We thought he'd come into this world and our lives would flow right along as it had the other 3 times we brought babies into this world.

We were wrong! After a normal pregnancy and delivery, Asa had to be sent to the NICU because he wasn't sucking, blood sugar dropping, floppy muscles, exaggerated startle reflex and jaundice.

He stayed 5 days were he learned to suck and eat enough to come home. He began nursing well but would scream in pain 30 minutes after each feeding. He had so much mucus and drooled so much. He had a terrible rash on his face. He wasn't making eye contact and was not hitting any milestones.

I kept taking him to the pediatrician but got nowhere until his 2 month checkup when he had only gained one pound since birth. That earned him an appt with a pediatric GI and a change to Neocate formula. Odd gasping spells and eye rolling got him into a pediatric neurologist before the GI appt. The neurologist (he was actually the head of the pediatric neurology dept) personally walked us over to the GI clinic and sat us in an exam room. That kinda makes you worry! That is when we really got the ball rolling. Asa was 3 months old.

At 4 months he was admitted to Vanderbilt Children's Hospital. He stayed 8 days and had a NG tube inserted so we could feed him directly into his stomach. He kept this for 2 months. Also during this time he had an EEG, CT scan, MRI, upper GI endoscopy with biopsy, flex sig, numerous blood tests, a genetics consult, and an ophthalmology consult and many other pokes and prods! So began our relationship with specialist!!

After 2 months on the NG tube, we removed it and tried to get Asa to eat enough to gain weight. He did OK for a little while but by 9 months old, he was fighting each feeding and not gaining weight despite being on Neocate formula at 30cal/oz. The decision was made to have a G-tube put in. The G-tube is a feeding tube that is inserted directly into Asa's belly. He can eat orally but won't so he gets feed into his belly.

Since he was going to have to be sedated for the surgery, it was agreed he should have a muscle biopsy at the same time. By 9 months he had finally began making eye contact. He smiled some but not very social. He was still very hypotonic (floppy) and didn't even have head control. Something was obviously going on with his muscles. All of his brain scans had been normal.

In Nov. 2008, when Asa was 13 months old, we found out the results of the muscle biopsy. Yes, it took 3+ months to get all of the results! He was diagnosed with Mitochondrial Myopathy. He is deficient in Complex IV for all of you medical junkies out there.

What this means is that his cells can't make enough energy to fuel his body....specifically for him, his muscles and GI system, that we know of. If his body has to burn energy to fight off infection, or a stress, then he looses energy in another system. Mito is a progressive disease with no treatment or cure. We try to keep him as healthy and happy as possible. We use the feeding tube to keep him feed so he doesn't have to struggle there. He takes numerous supplements and vitamins in the hope that they will keep him cells healthier. We check his eyes, hearing, heart, kidneys, liver, brain and lots of blood work yearly. Mito can affect any system so it is important to have baseline and watch for changes. He has a GI, neuro, geneticist, optometrist, ophthalmologist, cardiologist, developmental ped, regular ped and a mito specialist.

He gets OT, PT, speech/feeding and a home teacher weekly. He has some sensory issues with touch, sound, taste and texture. This plays into almost all areas of our lives! He is still very hypotonic but gained head control at just over a year (right after we started supplements!). He learned to sit when placed in a sitting position at 18 months. He still can't get into sitting alone. He learned to bottom scoot at just over 2. He does not crawl or walk.

He knows the signs for "moma", "daddy", "more" and "all done". He can show them when prompted but we are still waiting for him to initiate. He waves "bye-bye" and points all the time now. He loves to take a bath and water in general. He has a contagious laugh and can flash the most flirty grin ever!

We learned, with Asa, not take the small things for granted. Each smile, sound, word, bite or even trouble!! You just never know when they might not be so easy to come by or even if you'll have them at all!