inpatient feeding clinic

[AmyinWI]

Has anyone had their child to an inpatient feeding clinic? Gabe's therapist recommended this. She wants him to attend a clinic that uses a GI, sensory integration and behavioral approach. he has many sensory issues, but now that he's 2- the behaviors are starting as a result of his sensory aversions! I'm really at a loss of what to do. He has no interest in chewing anything solid, or anything remotely lumpy or crunchy. Basically he's on the 1st and 2nd baby foods with a little thickener.
And of course he can't communicate what he wants,so he's taken to throwing everything or hitting it away from his mouth...:unsure:

anyway- just wondering how much can be acheived with a weeklong stay at one of these specialty clinics. If you've gone- did both you and dh stay there? Some of these clinics are out of state, so it will be quite a hassle for us- yet I want to do whatever I can to help my son.
thanks for your input.

[beth m]

I don't have a child with special needs, but I have a friend in my homeschooling group that has a son with many special needs. He is autistic and has severe food allergies and when he was about a year and a half, they were forced by CPS to place him in one of the inpatient feeding clinics. He had basically fallen off the weight charts, and diagnosed as failure to thrive, he refused all food, and had sensory issues. She said the feeding clinic was awful, and they never would have put him there if they hadn't been forced to by the state. CPS threatened to take him and their other children away if they didn't put him there. He was there for a month and the first couple of weeks, she and her husband weren't allowed to see him at all, then they were allowed to visit for short amounts of time but they couldn't stay there. She said the feeding program was like something they do to prisoners of war. It wasn't until they got him in to see a specialist pediatrician that things got better, once they determined his food allergies and other issues. I don't know where you live, and what the program is like at the place you're considering for your son, it may not be anything like what my friend went through. I certainly hope it isn't!! Best wishes to you.

[AshleyS]

I don't have a child with special needs, but I have a friend in my homeschooling group that has a son with many special needs. He is autistic and has severe food allergies and when he was about a year and a half, they were forced by CPS to place him in one of the inpatient feeding clinics. He had basically fallen off the weight charts, and diagnosed as failure to thrive, he refused all food, and had sensory issues. She said the feeding clinic was awful, and they never would have put him there if they hadn't been forced to by the state. CPS threatened to take him and their other children away if they didn't put him there. He was there for a month and the first couple of weeks, she and her husband weren't allowed to see him at all, then they were allowed to visit for short amounts of time but they couldn't stay there. She said the feeding program was like something they do to prisoners of war. It wasn't until they got him in to see a specialist pediatrician that things got better, once they determined his food allergies and other issues. I don't know where you live, and what the program is like at the place you're considering for your son, it may not be anything like what my friend went through. I certainly hope it isn't!! Best wishes to you.

That sounds like a nightmare!!!

[Lisalyn]

Amy,
Your little one sounds so much like Eli. Eli was a great eater until he reached the chunky babyfood stage. I kept feeding him 1st foods, formula, and sometimes he would take 2nd stage foods.

What kept us out of trouble was his hefty weight. He weighed 25 lbs at 5 months and held that weight until he was nearly 2. At that point his ped and cardiologist put him on Pediasure-3 bottles daily. It was thought that it was heart-related, and some of it definitely was. However, he went through evaluations a few months after that and the speech therapist finally heard my side of the story and agreed that he had pretty severe sensory/oral aversion issues.

We just stopped the Pediasure, two years later. He is eating, but still will pocket, gag or swallow things whole. :sad:

He has been in feeding therapy for about a year. We were referred to an outpatient feeding group at the children's hospital, but we're still waiting for an opening. In the meantime, he is getting better. Finally. He still won't eat meat of any form, no veggies. Pizza, ice cream, cheese, noodles, bananas, bread....He likes white foods. :lol:

The Pediasure kept his nutrition up but since his heart surgery, he is gaining weight with it.

Did you know that you can get Pediasure through WIC with a doctor's prescription? Just thought I'd toss that out....

So..

All this to say, no. No experience with inpatient feeding therapy. :lol::blush:

[Alice R]

I have to say, I've never heard of this.

Amy, do you want to post some of the issues and we can try to problem solve? I'm sure, among all of us, there is A LOT of knowledge out there.

[Lisalyn]

Amy,

The one thing we did at home that seemed to make the biggest difference in the oral sensory issues was using an electric toothbrush to 'brush' Eli's inner cheeks, tongue, palate, etc. Our first speech therapist suggested it and I've noticed when we neglect to take those extra few minutes to brush all over, he seems less tolerant.

[AmyinWI]

Thanks all-
Beth, that experience sounds just awful! Our children's hospital is wonderful, I have never heard bad things about any of the clinics!
I called and got a referral from the ped, basically they start out as outpatient, doing an eval and giving suggestions, if things are severe enough they will suggest inpatient (which I doubt Gabe would qualify , from how it sounds)
Lisalyn- we do get WIC for his pediasure. At $200+ a month, that is a blessing!
We do have an electric toothbrush for oral stim. Also a nuk brush, chewy tubes, an electric vibrating animal thingy- etc.
I guess his main problems are not wanting to chew anything.. and not tolerating anything more than lumpy oatmeal or chopped up spagetti,etc. texture. anything more than that he gags/throws up, or just starts screaming and won't eat anymore. I think his progress is actually good, he's doing better than he was 6 months ago.
Also his reflux is getting very bad, and he's gagging/ throwing up most of the day now. So I think that is another main reason for ST recommending the feeding clinic. So they can do a GI workup as well.
Also, he's starting a lot of sensory/behavioral things. Like grinding his teeth, banging his head, hitting his mouth , rubbing things on his jaw,etc.

[AshleyS]

For us, we have avoided feeding clinics so far. My ds is totally tube fed, and so close, yet so far away from eating by mouth. We went for an eval to satisfy one of his docs and the ST that evaluated him at the hospital was satisfied with what he is doing. His OT is AWESOME--she has brought him so far. I guess we look at it like this: he IS making progress at his own pace--we will get there eventually. I really don't want to push him into a concentrated effort and have it blow up on us later, KWIM?

But each child is different, and you are his parent so you know best about what direction he needs to go!! If you think it will help your issues with him at home, then go for it! And just my 2cents, but I think any child with feeding issues needs a GI workup, feeding clinic or not.

[Lisalyn]

Amy,

It sounds like you are doing everything possible for Gabe. And I'm glad you knew about WIC for Pediasure. So many people don't.

You know, it's quite obvious that you were meant to be this baby's mama! :hcry::group: