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I have heard some talk about OCD revolving around food. I understand this if there is a fear of contamination. But is there any other way that this presents? I have an extremely picky 6yo. I always assumed this was sensory issues but I am totally unsure. He is not very verbal about WHY he doesn't want to eat things... just that he doesn't want to eat them. Meat and proteins are my biggest battles. Right now he asks for a chicken sandwich regularly but will eat around the chicken and does not want to eat the "white" (it is fried). He will eat some of the white with the brown... but not if he can see it. He also does not want meat in his spaghetti. If he sees it, he will not eat it. Sometimes I say it is tomatoes and he will eat it. Other times, he spits it out.

 

I was just wondering how OCD presents with other children if they talk more about why the won't eat things?

 

And on a sidenote, I am wondering is an intensive CBT type program would be benefitial for a child like that. I can see when he gets "stuck" but he is not very verbal about what he is thinking. Do you think a therapist would be better able to get to the reasons why?

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Well now, that would have been my oldest son 10 years ago. Fast forward to now and this one food issue is the last remaining PANDAS issue we still can't quite get rid of. Tried to get him to go through the CBT program when we were in Florida with my daughter, but being a teenager and all, he was sure he didn't need it. He is in denial and thinks he can fix it himself. His issue is that he will only eat a very limited number of foods. As you said, not a contaimination issue. He isn't worried about poison, dirt or anything else. As the counselor said in Florida it's one of the OCD's that many describe as "it just doesn't feel right". My son agreed with that, but still refused to take part in the therapy.

 

I would suggest if you could get him in a CBT program now, that you do it. I think these things are easier to fix when they are younger. It is very stuck in my sons head. He will not eat any fruits or vegetables. The only meat he eats is turkey bacon. He eats lots of peanut butter, & drinks lots of milk. There are a couple of cereals he eats. He eats french fries, chips and cookies of course. No pizza or chicken nuggets, nothing like that. It must be a very miserable thing to live with. He has been in counseling for 2 years and we attempted the CBT but he wouldn't participate. He still takes antibiotics and is otherwise a happy, seemingly well adjusted, good kid. But if I could go back 10 years, I would have done CBT with him then before it became so engrained. We have even seen Dr. Murphy about it again (he saw her 5 years ago). She ran more tests and her only suggestion was the CBT, which of course we tried, but CBT is one of those things that they have to be willing to participate in and he was having none of it.

 

So my guess is that the eating issue is definitely an OCD thing. Your child may not be able to describe or even understand why. Probably "it just doesn't feel right". Best of Luck....

 

Dedee

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It may be OCD. It may also be sensory. Or it could be a combination of both. OCD surrounding food is not necessarily about contamination. It can also be about "just right," as in, it doesn't look, feel or taste "just right," or it can be a scrupulosity form of OCD (especially in older or more "aware" kids) in which they have a moral concern of some sort in terms of eating a certain food.

 

Just from your description, it appears your DS prefers a non-animal diet; is it possible he's put two and two together about the food sources and doesn't want to eat the proteins based on them being "animals"?

 

Or, truthfully, it may just be the textures, especially with chicken. I think that's one reason why there's such a preference among the younger set for chicken nuggets and other versions of the protein that are mashed, slashed and pressed to the point where the original source is unrecognizable or texturally unidentifiable. But that doesn't really answer the issue with meat in his pasta sauce . . . are you using ground beef or ground sausage, or sliced bits? If using sliced, maybe try using ground?

 

I definitely think some CBT/ERP therapy would be helpful for both of you, though, so long as he's eating and otherwise functional, not sure you necessarily need one of the intensive variety. If you can find a good, local therapist and attack his OCD behaviors on a weekly basis, that might be a good place to start.

 

One final idea: can you get him to accompany you to the grocery store and offer him some parameters, such as, he can choose a protein or two for dinners during the week, but once he chooses, he has to eat what you serve?

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I am a psychotherapist with a specialty in child/adolescent treatment and in eating disorders. My grandson had PANDAS and I have begun treating PANDAS children. Many young children are very picky about food--vegetables and meat cannot touch on the plate, refusing certain foods, nothing green shall touch these lips etc-- and it's not necessarily a sign of OCD. There is, however, a form of OCD in which there is obsessive thinking about not allowing themselves to bite into food or swallow it, leading to the the obsessive compulsive behavior. Ultimately it can result in an eating disorder. References are

 

Sokol,M. (2001). Infection-triggered anorexia nervosa. Eating Disorders Review. 12, 5: 1-3.

 

Won Tesoriero,H (2004). Strep Throat Tie to Behavior Problem Is Studied --- Two Efforts Look at Link Between Bacterial Infection And Disorder in Children. The Wall Street Journal. November 2.

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My son's eating issues I think were a combination of OCD and sensory. He actually never told me the reasoning, but by the way he recovered from the eating issues, I can infer it was a combination. I believe he had contamination issues. I think he wanted to eat, but his brain told him not to. As for the sensory,for him, it was hot/cold food. As he healed, I was able to slowly get him to eat normal again. It was baby steps all the way. Don't force him to eat anything. Just break it down and do it in small steps. Realize even licking something he is usually refuses to eat to may be a triumph.

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Thanks for the info. It is good to know I am not alone in dealing with these issues. It is tough though when most people just think picky child but I know it goes deeper. I cannot even bribe him with anything (Other issues he can be bribed when not in crisis mode). And I know he wants to eat these things for the bribe. He will get himself all ready to do it and then when it is in front of him, he just won't / can't.

 

He has mentioned something about not eating animals ONE time. It was a passing comment and I have tried to dig deeper without putting ideas into his head... in case he was not actually thinking that. I am not prepared with how I would react to that. And I would be 100% fine if he did not want to eat meat... but he also does not eat cheese, milk, peanut butter, nuts... all of the typical meat protein substitutes. My only protein sources are pastas, the little meat he eats around and protein cereal bars. Frustrating... plus he is small for his age... although he is strong so he is not truly malnourished, I suppose.

 

Thanks for the help though. I am going to call a CBT therapist I found that is about 45 minutes away. I would love to try Dr. Storch's program but that will take some work if we could even get him in. We did get an appointment with Dr. Murphy in November and the food issues will be at the top of my list. But I think I will go ahead and see if I can get in with the local person. Apparently she is on the IOCDF committee with Murphy and Storch so she should know a little about PANDAS and the residual effects hopefully.

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It sounds to me like you have a good plan. I think it is important that you address it now. I don't mean to harp on it but I was given a false sense of security with my son when he was young. Of course, most folks didn't understand PANDAS back then and they kept telling me it was a phase, he will grow out of it, just a picky eater, etc... Now I know it was a PANDAS issue, most certainly an OCD issue. As you said, he actually did want to eat other things but when it came down to putting it in front of him, he just wasn't able to go through with it. Then that gave way to him feeling like a failure, feelings of sadness and so forth. That is not a normal phase. Of course, this is all hind sight. If I had done CBT with him years ago maybe I would have been able to help him. That is my biggest regret. Now he is a teenager and he struggles with the social issues of going out with his friends but can't / won't eat the things they are eating. Then he is embarressed because they say something about it. So he avoids social functions involving food in case someone might notice he isn't eating. This makes me so sad because I think he is missing out on so many "normal" teenage things.

 

Being a PANDAS parent is so hard. Everything is gray, no black & white. Best of luck with your son....

 

Dedee

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Thanks DeeDee. I am going to try a local CBT (left an e-mail) and see how that goes. If I can determine that this is OCD, I would think an intensive program might be benefitial. But I can get started a lot quicker with a local person and see if maybe we can just tackle it that way. Was Storch's program helpful with your other child?

 

Thanks for the advice from a parent that is farther down the same road. It is always very helpful and I take all of it to heart!

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Yes, Storch's program was wonderful. My oldest went to 2 sessions before he decided he wasn't going to participate. They were great and met with me a few more times to help me come up with a plan on how to deal with a teen age PANDAS boy in denial that he has issues with eating certain foods. My daughter who was 7 then, finished the program. She doesn't have any eating issues, but lots of other OCD issues. It was life changing for her. She really didn't have a good understanding of OCD or how to try to control it in any way. The program gave her a sense of control. We have started a local program this week to keep things fresh in her mind. I'm sure Dr. Murphy will sugest CBT. She is big on it. A local program may be fine if you get someone who is really good. The person we are using actually trained under Dr. Storch so we know she uses the same concepts. If you call down there or ask when you go see Dr. M, they are happy to give you a referal to someone in your area. That's what they did for us. They have trained so many down there that they know people almost everywhere. Even when we were just calling to try to get an appointment for an evaluation, they said if we decided not to come they would be glad to give us a referal. Everyone there is so nice and truly cares about these PANDAS kids. You may even be able to e-mail the Rothman Center and ask for a referal in your area. I bet they would give you a name. We are very happy with the person they told us about. PM me if you have any questions.

 

Dedee

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Dedee took my words right out of my mouth! My dd 11 is a vegetarian, since 9 yrs old! She has the sensory issues with the food not feeling right in her mouth, too thick, too thin, too crunchy, but she flat out refuses to eat anything that was once living and breathing just bc thats "mean." I add what i can without her knowing, such as benefiber, etc. but she's always questioning if i put something in it, and if she thinks for a minute i have, then she refuses. She is VERY underweight, the most helpful supplement I've been able to use is "bear milk" pediasure, but cost is high. It's OCD for sure.

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He will get himself all ready to do it and then when it is in front of him, he just won't / can't.

 

 

just wanted to mention, in phrasing things. . . the initial behavioral therapist that diagnosed ds, when we first saw her and she was trying to understand. . . we were discussing potty avoidance and intense school avoidance. she asked if it was as if he 'just couldn't bring himself to do it'. that was exactly the right phrasing. i have remembered this and tried to use it when discussing with other therapists and school personnel, it does seem to be helpful to try to emphasize that it is not as simple as a choice for him.

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  • 4 months later...

Can anyone on this thread tell me if they remember their child turning orange? I don't mean the little bit of orange around the nose etc that babies get, I mean whole body? I think Melanie is the only other parent that I have heard mention it. It seems like my son turned orange shortly before he started eliminating foods. Baby foods, as in Gerber 3rd foods.

 

I agree with others here. I would jump on this at a young age, and wish I had

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