Feeding clinic appt. today

[AmyinWI]

I had Gabe at Children's today for his eval at the feeding clinic. It was a 3 hr appt.! thank goodness dh took off from work to watch the other kids! They asked me a million questions about his eating that I already answered on the questionaire. then they observed me feeding him from behind a mirrored window (that was odd!) then I met with a dietician,ST, nurse, psychologist and GI Dr. It was a loooonnnggg day!
THey had some really good ideas for getting him to eat better (he absolutely refuses to eat anything beyond lumpy pureed food).

I am most concerned about his reflux at this point. For a few hours after eating, he continually spits up the food and milk, then swallows it back down. Sometimes he doesnt' swallow it,and it drips all over the house, my clothes, his clothes,etc. It's disgusting for one thing,and the ST is concerned it's really affecting his speech and eating.

So anyway- the GI Dr. suggested after doing a GI workup, that we try a new med, and if it's not helpful (which she doesn't think it will be) she highly recommends surgery to tighten up the top of his stomach (fundoplication) I am all in favor of it, if it helps him. Only problem is he will need a stomach tube placed, to remove air, if he gets bloated. I'll also have to flush it twice a day. Not so terrible, since i'm a nurse I know how to do it. It's just another thing the poor guy has to deal with.
Anyone have a child that has gone through this fundoplication surgery? They tell me it might be able to be done laproscopically-which sounds less painful.

[Chalane (FL)]

Sorry, your going through this:sad: Do some research on the fundoplication. Joey had one (without a g-tube) and it losened in 2 yrs. my sis also had the same experience with hers. Some GI drs. think it's a cure all for reflux, but I'm not sure if I'd go through it again. Joey's was done laproscopically but it's still quite painful; although the scars are very small (be prepared to explain them at all new dr. appt though:eyes:). Your in my prayers and I'm sure what ever you decide will be the right choice for Gabe.:group:

They may want him to try feeding therapy with a speech therapist that has had training in feeding issues. The boys each had it twice. The first try we made very little progress before the therapist and then we moved. The second time Joey did great and graduated quickly. Leighton was "dismissed for failure to improve" a very nice way to say your kid flunked eating.

[AmyinWI]

Thanks for sharing your experience, Chalane! How old was Joey when he had the surgery? Did his reflux improve on it's own? Was there any other suggestions? The Dr. implied that he may be so used to brining up the food, that it's become a stimulation type activity for him....and since he's so cognitively delayed, there's no way we can "untrain" him to stop doing this.
I just can't imagine Gabe going through life urping up his food constantly.:sad:

[Chalane (FL)]

You're right he can't go through life bring up his food all the time.:sad:
Bringing food back up as a stimulation is a new one for me (and I've know lots of people with special needs kids over the years). If you learn more about that I'd like to know.

I'm not sure how cognitively delayed Gabe is, but Joey's IQ was tested in the mid 40s.

I think Joey was 2 when he had the surgery. After the fundoplication loosened the reflux did eventually stop on it's own. I think finally being able to sit up & walking helped a lot (he was 3 1/2 when he started walking). Joey was on baby food until he was 7 yrs old. even with the surgery. Leighton who has a g-tube, but didn't have a fundoplication was on reflux meds until age 10.

Have they tried a product called Thick-It? Sometime this helps kids with swallowing issues, but I can't remember if it helps kids with relfux (sometime this stage of their lives was a blur).

Is he able to eat enough to be healthy or are you looking at putting in a g-tube for nutrition as well? BTW I forgot to mention last time that the g-tube placement was extremely painful for a couple of days and they gave Leighton morphine for 48 hrs to get him through the worst of it. Leighton was 21 months when he got his and for the first 24 hrs I thought we'd made the wrong choice, but after a couple of days I realized it was the right decision. He is now 11 and I'm very happy he has it.

If you do decide on the surgery and need any tips on keeping the extention tubing foe the g-tube clean let me know I've gained a few tips over the years.

[AmyinWI]

I was told his reflux should have decreased after taking more foods,and walking. He has been walking since April and his reflux is less as far as amount, but not freqency. I have heard of thick-it (use that at the nursing home I work at), I have tried thickening his pediasure with baby cereal, but it didn't seem to help much. They are doing a swallow study in a few weeks, so maybe that will give some clues about what would help?

As far as the tube, it would only be to reduce bloating, not for nutrition. He takes mostly pediasure for his nutrition now- with a few tablespoons of pureed food at each meal.

[Marie IN]

Amy,

Both of my boys have feeding issues ( rare genetic disorder). The older has a gtube and a fundoplication. I know there are many opinions on this, but the fundo has worked great for him. He had it done before there was a laproscopic option. He still takes Zantac. Do you know what is triggering the reflux? For my son it is delayed gastric emptying. We have to keep his system very regular or it starts back up. What med does the doc want to try?


One thing I want to throw out is, has anyone checked for food allergies? Pediasure is not always well tolerated--lots of allergy triggers in it with dairy, corn, etc. We are actually moving to a blended diet for my son and getting away from canned formula because of issues we are having. Blended diet is easy. Basically you just blend up whatever the family is having for dinner taking into account any food allergies and adding whatever supplements ( ie vitamins, meds, etc). It can then be taken by bottle, spoon or if you are using a high end blender like a vitamix, it can go down the tube. If you want more info on it let me know. There is a yahoo group with lots of info.

I agree with Chalane about taking care in choosing a feeding specialist. Your son sounds like mine in that it's oral motor/reflux problem and not behavioral. I had a tough time finding one who could help with these issues. We finally ended up attending a program in Virginia called New Visions. www.new-vis.com Wonderful program and helped us with oral motor skills, comfort in feeding ( ie reducing fear, stomach comfort) and sensory issues.

Didn't mean to write a book! LOL We've just spent lots of time on the boys feeding issues.

[Chalane (FL)]

Glad Marie mentioned Pediasure not always being well tolerated. That was the first formula Leighton was put on after the g-tube was placed and Joey took it orally, for a while. Joey did fine on it, but it wasn't right for Leighton. It took me a while (3 GIs kept saying all formula for this age was milk based), but I finally researched and found non-dairy based formula. I've also found out that you can be "sensitive" to something without it showing up as an allergy.

If you decide on the surgery. Mention that his main form of nutrition is from the formula and that he has a g-tube to your insurance company. Our insurance pays for Leighton's formula (although he is fed via g-tube not oraly).