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Advice OCD with his weight and food!


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My 16 YO son has since the age of about 9 been concerned about eating certain foods. He is always worried about how much fat is in a food item. He sees the word fat and his OCD sees "this will make you fat" although intellectually he completely understands nutrition, calories etc. In 2010 we were dealing with loosing weight, restricting food and water. Now we have him back to eating, weight is normal but he thinks he is fat and thinks about food all the time. He is constantly in the kitchen looking at food he takes a little piece of this a bite of that, he is driving me crazy! He will not eat what we have for dinner unless it is chicken or something else low in fat. He spends way to much time preoccupied with what he is going to eat next and worrying he is fat. Also he regurgitates his food, sometimes within minutes of eating. He is not physically making himself regurgitate but undigested food just comes back up with no stomach muscle involvement. he regurgitation began in February, as soon as he stopped restricting food and began to eat "normally". His pediatrician treated it as Gerd but this is something else. It is PANDAS and eating disorder related. I guess my main question is what doctor do I take him to. There are no doctors in our area who seem to understand PANDAS. We tried therapist for the eating disorder but they had no clue about PANDAS. He has been seeing a neurologist, again they have no knowledge of PANDAS. HELP!

 

Thanks

Melissa

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Gosh Melissa,

 

I am so sorry. I have two pandas daughters, and both have had eating issues with pandas exacerbations. (one is having trouble right now)

 

Of course, I would advise you to see a gastro, just to rule out any physical issues causing the reflux. IMHO pediatricians are great for the everyday stuff, but not when there is a problem. Ruling out physical issues, will also help your pandas doc. While I am pretty sure it is something due to pandas, as you are, it is helpful to get an "all clear" from the gastro.

 

I will say the harsh reality is your son needs a pandas doc, and a good therapist. You made need to travel for one, or both.

 

We did have a hard time making progress with the food stuff, until they got pandas treatment. Oral steroids, IV steroids, antibiotics and plasma pheresis have all worked at different points. These medical interventions in conjunction with a therapist that specializes in ocd is so important.

 

In the meantime, we did what we needed to get calories and nutrition into the kids, without making it a battle or power struggle. (meals in front of tv, small bite meals, smoothies and lots of snacks). It sounds like, thankfully, your son is still eating, and nutritiously, so your worries are a bit less right now. I would have all nutritious foods available at all times, until you can address this for him.

 

But- I know- it is SO hard. It is a lot of work! My little one (who is skinny skinny to start with, and already eats like a bird) is having lots of trouble eating meals. I just said to my mother- once school ends, I am going to put a big brunch spread on the island, and leave it there from 7-1. This should help alleviate dd's stress, and get enough calories in her, Yet- that is tiring- lots of grocery shopping, cutting, slicing, baking, etc.

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My son has lots of food issues too - but is still very young, so our challenges are a bit different. Our therapist suggested that we try to have our son "help" a mealtimes, help prepare, get him involved, etc... to try to prevent the inevitable mealtime meltdowns. It has helped when he's feeling better, but when he's sick, it's nothing but corndogs to eat (a discovery we just recently made after almost a week of hardly eating!!)

 

Based on that premise, maybe, since your son is 16 and is concerned about the fat content, etc... in food. Have you tried maybe buying him a few "low-fat" cookbooks, and having him help prepare meals?

 

This might give him some other options other than just the few foods he relies on now, and give him a bit more control over his choices so maybe he won't be as pre-occupied with what you're going to make him eat next. (And if it works - you'll have some help making dinner! Bonus!)

 

It's just a thought.

 

As for the regurgitation thing - I agree with dcmom, I would rule out anything physical first - eventhough we all know it's likely PANDAS. Our pediatrician, who is the one who dx our son and is very progressive in treatment (although readily admits he's not an expert and there is still a TON to be learned about PANDAS) has taken that approach with us. With every "new" symptom that comes up that may fit PANDAS, he rules out other causes first - just to make sure that we don't miss something more severe because in fits into the PANDAS category. He sent us to the neuro when the tics started because they presented almost a year after his PANDAS onset (we presented first with OCD). And while it was "classic" PANDAS, he wanted to rule out anything else since it wasn't present at initial onset.

 

Kind of a pain, I know, but it's got to help knowing what it's NOT when doctors are looking at you like you're a nutcase for suggesting it's PANDAS B)

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I don't have a fix but here are a few things that help my DS. First, all teen boys are eating machines. Every teen boy I know is constantly parked in front of the frig with the doors open and searching for something. This drives most moms crazy.

 

I gave up on eating all meals at mealtime - tried but this is not a battle I can win. I make a plate and put it in the frig. This is not how my DH and I were raised but you do what have to do (thank you Dr. Greene). My son is also a picky eater when pandas is flaring.

 

I also make meals just for him. DS goes thr stages - he likes to eat one thing everyday until he is burned out on it. My son likes chicken pot pie on and off. So I make it and put it into individual glass bowls (less mess) and put them in the frig so he can microwave them. I also make chili and divide it up. I have trouble getting him to eat enough protein so we do protein powders added to shakes. DS also has a gag reaction sometimes and shakes go down easier with a straw.

 

When I was pregnant, I became very very sensitive to smells. I would get sick from different smells - severe headache a/o vomit. The only safe foods for me were cheese pizza and apples. I could only take my vitamins with the pizza. I dumped a couple of friends who kept telling me it was only in my head. When you are repeatedly woken up at 4am to vomit, it is not in your head. This could have been a training period for me to help me deal with DS.

 

If it is not OCD, texture or smell of the food, I would ask your son to do an elimination diet to rule out any food allergies. This is a cheap cheap test-free. Done at home.

 

Maybe if he had to follow a diet it would help - is he good with lists? I don't have a copy of it but the diabetes society has a great diet. I flunked the sugar test when I was pregnant so the dr put me on this diet. They gave me a chart with number of calories going across and meals/food groups going down. The chart was filled with the required amount of food needed. I was put on the max of 2000 calories. I could not eat all the food listed. Another good thing about this diet is the list of free foods - vegs - things you should eat lots of. This diet tells you the minimum amount of food you must eat to stay healthy - calories needed and how to maintain constant sugar level. There are also other diets for athletes who are trying to maintain a constant energy/sugar level. Maybe someone in cyberspace can pm you a copy?

 

Your son needs to understand that his brain is mainly fat and his body needs fats. My DS first ped would tell me to fed him lots of fats. There are lots of articles about good fats - olive, coconut oil etc.

 

I would see a gastro dr.

Good luck and if you find a solution please share it with us.

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My 16 YO son has since the age of about 9 been concerned about eating certain foods. He is always worried about how much fat is in a food item. He sees the word fat and his OCD sees "this will make you fat" although intellectually he completely understands nutrition, calories etc. In 2010 we were dealing with loosing weight, restricting food and water. Now we have him back to eating, weight is normal but he thinks he is fat and thinks about food all the time. He is constantly in the kitchen looking at food he takes a little piece of this a bite of that, he is driving me crazy! He will not eat what we have for dinner unless it is chicken or something else low in fat. He spends way to much time preoccupied with what he is going to eat next and worrying he is fat. Also he regurgitates his food, sometimes within minutes of eating. He is not physically making himself regurgitate but undigested food just comes back up with no stomach muscle involvement. he regurgitation began in February, as soon as he stopped restricting food and began to eat "normally". His pediatrician treated it as Gerd but this is something else. It is PANDAS and eating disorder related. I guess my main question is what doctor do I take him to. There are no doctors in our area who seem to understand PANDAS. We tried therapist for the eating disorder but they had no clue about PANDAS. He has been seeing a neurologist, again they have no knowledge of PANDAS. HELP!

 

Thanks

Melissa

 

Hi Melissa,

Forgive me if this has been discussed in the past, but lyme disease is also now being linked to eating disorders. This is a huge breakthrough for kids who have been treated for eating disorders as a mental illness, when in fact, it's cause is biological. Has he been checked for lyme through Igenex?

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Thanks for all of the ideas, I will try them and see, anything to lessen the amount of time he spends on thinking about food. He has been checked for Lyme with Lab Corb and all bands on Western Blot were negative. Although I am not sure if I trust it. My older daughter also PANDAS had bands 18 and 23 Pos. but the one doc she saw who is suppose to be somewhat Lyme literate said because she isnt having major problems and her CD(I think thats what it is called) is 87 that we will take a wait and see approach. 87 is w/in normal range but I thought that most normal immune systems were at least 150. So back to son, he had an xray of abdomen to rule kinks, masses etc. and everything was fine. I guess a trip to Gastro is in order. I have been dealing with my kids PANDAS issues for 19 years and it seems like a new symptom is always popping up, Some days I feel like a crazy person I can only imagine how hard it is on these kids.

Thanks again for the advice

Melissa

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