Gabriel was seen by the CHOP (Children's Hospital of Philadelphia) feeding team again. It has been a year since he was last seen and he is still only eating five foods. His behaviors have become worse and he has taught himself to gag and vomit to avoid eating any other foods. He is eating very unhealthy and gaining alot of weight.
The team is recommending their four week in patient feeding clinic. This means for four weeks I would have to take him to the hospital at 8:00am to 4:30pm each day and stay there the entire day while a behaviorist works with him for all three meals..
This also means he will miss four weeks of school and the twins will miss four weeks of therapy because I will either have to bring them with me or find someone to watch them.
I guess I just want to hear if it has worked for anyone? It is a huge commitment and I am really thinking about it
Thanks in advance
The clinic is about 45 minutes from my home and I have to be on the premisis the entire time. I have to watch him in between meals and after the first two week they wean me into doing the feeding with the behaviorist and then removing the behaviorist.
I do think it is worth it. My husband has said he can take two weeks vacation and my mother is about an hour away so I know she can help but i want to hear about success stories. The psychologist said that he will leave there eating at least four new foods. They also train the teacher in his school to implement the stratigies.
oh and i still have to see if my insurance and/or medicaid will pay for it.
How possible is it for you to find someone to watch the twins? How far is the clinic from your home? Do you have to actually be present the entire time or just for the feedings? I think I would try to work it out b4 ruling it out. It sounds like it could be worth it.We also took my ds to the CHoP feedling clinic. And they too wereI've heard mixed reviews of CHOP's feeding clinic. It's very behavioral so if your son has sensory issues causing his behavior it may not be the best setting for him. Of course, if he's losing weight etc you may have to do it. My son also has eating issues (only eats dry crunchy food) - and we're in the Philly area. I've talked to several therapists about it and they said it also depends on your child's temperment. My son is VERY strong willed and persistent wiith sensory issues involving tactile play and texture aversion. He's also very smart with an amazing memory. His therapists and doctor thought it would backfire - that he might give in at the clinic but would return to current or even worse eating behavior once the program was over - that we had to work to resolve the underlying issues before addressing the behavior.
BTW, since you're in the Philly area, I just started taking my son to A Total Approach and they work on feeding using a sensory approach. I think it's going to take longer, but will have better results for my son. If you're interested in a behavioral approach, I just heard about a feeding program in West Chester called SPARC that might be more convenient depending where you live.
This is important. Can your husband take vacation time to be with the twins then? Can you hire a sitter to be there with the twins? Search for respite services that reimburse for sitting. Or trade with a friend. Promise to sit for her kids in exchange.
The truth is that feeding therapy is usually given to kids who don't eat at all and are in danger of going on a feeding tube. I don't believe your son has taught himself to vomit. He has sensory integration issues with food. The texture nauseates him and he'll vomit. Think of it this way. Do you think you could swallow a grub without vomiting? Plenty of the world's people eat grubs daily. But they are used to the concept and the texture. When you give your son something that he does not want to eat, he gags. This is natural. Occupational therapists who specialize in sensory integration therapy can oftentimes address the eating thing. Since your son is not going to die from not eating, you can afford to wait until the time is more convenient to go to CHOP. I chose to ignore my son's poor eating habits when he was young -- for these reasons:
1. He ate SOMETHING from every food group, though only one thing.
2. As with all kids, fighting over food only exacerbates not wanting to eat the food. In fact, my son would gag and vomit, too, so what was the point.
3. He was totally and completely healthy with nary a cold EVER.
4. I had SO many other things I had to push him to do -- all those therapies, for example -- so I chose not to make food my battle.
5. He was not in danger of being on a feeding tube.
The truth is that it took until he was 15 for him to start eating everything. Still, he wants to eat his "favorites" and THEN eat other things. I am glad I never made a big deal about his odd eating. Of course, I had that luxury because he was not underweight and in dire need of a feeding tube.
If your son's actual nutrition is so bad his immediate health is suffering, go to CHOP now. Otherwise, you may be able to wait until a more convenient time. Speak to your son's OT about eating goals on the OT part of his IEP. It sounds as though death is not imminent so you can try other things first. But trying to force him to "eat right" is not going to work. Also, I know a boy who had feeding therapy (in school) and it took two years for him to begin to eat normally. In 4 weeks, they can start, but I'm sure they'll be depending on you to continue this start at home, so make sure there is a strong parent training component. That probably means you CANNOT bring the twins with you. LEt us know what you decide.
Alison... My best friends son who is severly autistic did this clinic last year.. And it went very well for them.. They taught him how to eat new foods and worked with him very well.. She also lives in south jersey If you want i can give her a call and give you her email and you guys can chat.. She is my hero she has helped me everystepof the wayshe is very knowlegable when it comes to autism. Let me know.. Danielle I would definitely have an OT who specializes in senosory issues give you an opinion. Feeding therapy IS behavioral. It does not address root causes. As I said before, I think the only reason to go the medical feeding therapy route is for extreme weight loss or lack of nutrition. For overweight, I'd try to keep him away from food and out in the world, exercising. I am sure your son has lots of other things you need to concentrate on. Focus on them and the food thing will loom less large. Of course, if he is getting sickly, that is another story entirely.CHOP has a great reputation in this area as I recall, so you are doing the right thing...Do the therapists for your twins come to you or do you go to them? Would they be willing to work odd hours? Sometimes you don't know until you ask?
Good luck!