Reflux Revisited

[Cathy]

Okay, I know we have talked about this and that our kids have a high incidence of GERD. Laura, you mentioned to me about Silent Reflux and I understand that a little better now. Before Christmas we started Katie on Prevacid for her reflux, unfortunately, it has not helped much. Her Doctor is scheduling a visit to a pediatric Gastroenterologist at the Marshfield Clinic, in WI.

Today I called the DS Clinic in Milwaukee and spoke with t e coordinator. I was only calling to schedule a summer visit but we started talking about some oral motor issues and concerns that were brought up at the Parent Teacher Conference last week. The teachers were concerned that Katie was GNAWING or her thumb. She shoves her entire thumb into her mouth and chews.

When I mentioned this to the DS clinic she said... "OHHHHH that is a reaction to the reflux". It's like Katie is trying to shove the food back down her throat herself. She said that there may or may not be any spitting up, but Katie gets that "feeling" and acidy taste and she is trying to push it back.

Has anyone else every heard of this?

Thoughts on this appreciated.

Thanks,

Cathy

[momofrussell]

Well.. Russell doesn't GNAW on his finger but he has been a finger sucker since a baby... and now when he refluxes.. he will stick his finger in his mouth to swallow it back instead of spitting it up! EW! LOL.. but he does! Like a cow and it's cud! LMAO

So.. I can totally see what your gal was saying!

A.

[Cathy]

Okay,

Katie is scheduled to go to Marshfield in March. Can anyone out there tell me if there are certain foods that affect reflux???

Hoping to minimize the occurance until we get to Marshfield.

Thanks,

Cathy

[momofrussell]

FATTY FOODS!!!!! MORE FAT.. MORE REFLUX!!! Also.. chocolate, tomatoes, acidy type foods, and MILK.. yes MILK if you drink anything but nonfat... but the big rule of thumb is fatty foods.

Kevin was put on a VERY strict low fat diet and man.. did it change his reflux/GERD...

a.

[Cathy]

Thank you so much A, a friend from town here told me about the chocolate and caffeine.

Katie doesn't drink coffee (or pop) so we are safe there. But the school has been giving her chocolate milk, which she never had before now.

As for fatty foods... hmm that wold be tough, she doesn't eat a LOT of fatty foods, but she does eat some. I am going to try and cut those back and let the teachers know. Maybe at least she won't suffer. The hard part is gonna be the milk. Katie lives for Milk.

I suppose I can try some non-fat, would skim milk be okay? I have never had anything but whole milk (had to fatten my girls up)

Thank you so much for your help! Katie thanks you!!

Hugs,


Cathy

[momofrussell]

Well.. I can only speak for Russell.. but whole and 2% milk was AWFUL For his reflux. It was a nightmare... also.. YOGURT! a big EW and UGH! LOL... So.. when he was an infant and on formula he was on Soy Formula which helped a bit but not much.. there was still fat in it or something. Then at a year we switched to milk.. we tried Soy, Lactose Free, ect.. they were all yucky.. so the only thing that helped a little was the nonfat... if I gave him any with ANY fat in it.. it was 10 times worse then it already was.. which was pretty bad already! heehee...I knew, even way back then there was some connection to the fat stuff or fat/proteins stuff.. and our GI doc confirmed that kids w/reflux have a hard time with milk with fat in it. I'd think that chocolate milk might not be a good thing for her

Also.. we had to finally end up taking him off of milk all together for a couple years.. he was around maybe 3 or so? Alot of kids have milk allergies and we suspected with our PT and docs, that he might have one.. even if minor.. and it affected his reflux worse and also made him snot nosed with chronic sinus issues WAY more then he should have. Milk allergies come out in kids like chronic sinus. Then having reflux and being "wet" inside all the time didn't help...so.. we just omitted the milk all together for a couple years. We had to omit yogurt completely until just recently. We just had to find different sources of calcium for him for awhile.. a challenge but it was done.

I would say that alot of liquid still triggers it with Russell. His low tone just doesn't propel liquid like he should.. and it's so light weight.. we have always had to limit his liquid intake due to it. But the good thing about Russell's reflux.. he doesn't have it come half way up and burn him like some do.. That is so painful.. Russell's comes ALL the way back up! To this day he doesn't cry or fuss over it.

A.

[vicki]

Kyle drinks Soy milk he has never been able to drink any thing else.
He has been on prevacid for aleast a year and we have started reglan now too it really seems to be helping.
Vicki

[marlies]

First, I would like to introduce myself. My name is Marlies (29) and I have a little brother (21) with mild-moderate Downsyndrome. He is a very sociable and lovable person.

It first started (maybe 4 years ago or less)as a way to get attention (is what I believe) saying he was sick, sometimes he would be sent home. At home he would show no signs of not feeling well. The doctors said everything was ok. Once he threw himself to the floor shaking (pretending), the school called emergency that time, again, nothing was found. Then there was throwing up in the bus or at school at the beginning of the day and he would be sent home.

Time went on... it got more serious. He started throwing up after every meal. Once he even opened the door of a moving car and threw himself out, the car wasn't going fast, now of course child lock is on all the time(could it be fustration?). The doctors checked him for digestion problems, nothing, they didn't find anything wrong. Finally after being in the hospital (out of the country)and getting fed through IV and given an endoscopy (finally, also out of the country)they thought of (FINALLY)checking the rest of his body, not just the digestive system. They found an infection in the lungs! God!!! All this time!!! YOu can imagine how I felt! You can imagine how my parents felt!!! All this time my little brother with an infection!! But then.... how is this related?

He got treatment for the infection. It started getting better right away.

When we thought it was in the past, there was still the ocasional vomiting. Now it started again on his first day of school ( a school we have been anxious for him to get into) and they are re-considering taking him! It's a special school and they specialize with children and adults with Downsyndrome. I just have so many questions... and I am very fustrated. My parents seem to have done everything they can, but is it enough? What's all this vomiting about? I think it's somewhat emotional, a way he uses to comunicate or manipulate situations, but then how can I know for sure? It of course is affecting him physically. He has lost a lot of weight.

I read about the reflux disease, and saw the diagram for the Nissen that was very informative.

Does anyone have suggestions? Please be kind...
Thank you.