PANDAS and Food

[Suzan]

Thanks EAMom for suggesting that I repost this on the PANDAS board, I had orig. been trying to figure out if this food stuff was OCD..... I had already received some feedback over there but any other stories or suggestions would be appreciated as I try to figure out what is going on. I was actually starting to wonder if 6 yr olds could be considered failure to thrive yesterday... But she came home and ate well and had a huge breakfast this morning so I am calmed down for now.....

 

DD6 is slowly eliminating anything she will eat. She will get hooked on one thing (hashbrowns, pancakes, rice, pasta, french toast, eggs, chicken, anything) and ask for it breakfast, lunch and dinner. In the beginning, I was so happy that she was eating so much and so happily that I would make her what she wanted. But then I realized after a while, she'd burn out on it and decide whe doesn't like it any more and won't eat it again. She's a carb-a-holic but she's even eliminating junky stuff like chips and popcorn. She's hungry, she wants to eat, but nothing sounds good.

 

She doesn't like her food to touch. She'd rather eat one type of food at a time so she'd eat her chicken, still hungry, eat some veggies, still hungry, eat something else.....

 

There are so many things she doesn't like. When I get lists from people of all the great things you can pack in lunches, easy dinner ideas, etc. I can usually illiminate most of them as things she won't eat.

 

Right now she gets a lof of her nutrition from nuts. Soon she won't like them either. She won't eat chicken or eggs any more. I'm so worried about her. She has lost weight recently and is still under 40 lbs. I got annoyed with her this morning because she would not find anything she wanted to eat since I would not make her french toast (the only thing she wants to eat lately but we were running late). So I got annoyed and she started crying saying "what's wrong with me? Why don't I have any taste buds left?". She was so pathetic and desperate that my 7 yr old and I both started crying. She won't drink any of the protein drinks that I have found that are gluten/dairy/soy free. The one I have is egg protein and it is really good.

 

Other things that seem OCD - she has a "boyfriend" who she hasn't seen in 2 years. His mom doesn't return our calls so I doubt she will ever see him again but she cries that she misses and loves him and she often plays imaginary games that her dolls are the girl and this boy.

 

If she gets something in her head that she wants to do (make clay pots, go to a jump house, go out to eat) she'll talk about it every day, morning and night until we do it.

 

I'm sitting and waiting to hear from our Neurologist about our possible PANDAS diagnosis. The waiting is killing me and I get more and more stressed about things I see in her.

 

Thanks,

 

Susan

[ShaesMom]

Hi Susan

 

My 6 yr old dd is having some similar food issues. She still has about 1/2 dozen things she will eat but that is it. Oddly enough, nuts are one of those items. I will be glad when summer is here because she has completely stopped eating at school with the exception of about 6 pretzels a day. Several weeks ago I gave up on making her a healthy lunch and just started throwing in whatever I thought she would eat. It didn't help. I know she is hungry because when she gets home from school she will usually eat everything in your lunch box (except the remaining pretzels) and then eat a full dinner within the next two hours. She has told us she no longer wants to eat out--she only wants to eat at home. She also weighs 40lbs and can't afford to lose anymore.

 

My dd also gets her mind set on something and then doesn't let it go until we have done it. If for some reason we can not get it done--she will start to have a tantrum. It doesn't matter that we have told her we would do it first thing tomorrow. Her frustration is so out of proportion. She never has real tears when this happens so we can always attribute it to the PANDAS.

 

The carb cravings may be caused by an overload of yeast in her gut--this is what they feed off of.

 

I know I haven't been much help, just wanted to share our similar experiences.

 

Sam

[Suzan]

Hi Susan

 

My 6 yr old dd is having some similar food issues. She still has about 1/2 dozen things she will eat but that is it. Oddly enough, nuts are one of those items. I will be glad when summer is here because she has completely stopped eating at school with the exception of about 6 pretzels a day. Several weeks ago I gave up on making her a healthy lunch and just started throwing in whatever I thought she would eat. It didn't help. I know she is hungry because when she gets home from school she will usually eat everything in your lunch box (except the remaining pretzels) and then eat a full dinner within the next two hours. She has told us she no longer wants to eat out--she only wants to eat at home. She also weighs 40lbs and can't afford to lose anymore.

 

Wow, thanks, it does help a lot to hear experiences. My dd does this too, she hardly eats anything at school. I send her with nuts and chips and a drink. It used to be nuts, chips and some fruit but now she won't eat the fruit and only eats 1/2 the bag of chips. I stopped worrying so much about healthy too and just told her teacher not to worry about it since I was worried enough and to just not comment on her food (they like to tell the kids whether their food is a balanced meal or healthy, etc.)

 

Cyber hugs to you and your dd!

 

Susan

[thereishope]

My son went through a food strike entirely then slowly brought things back into his diet. I remember freaking out thinking they'd want to put him on an iv or feeding tube if it kept up too long. When he slowly added things it was first self contained foods, then cold foods, then cooked, and finally back to normal. I think issues with food can be expected with PANDAS. Anorexia is also associated with it. Do you see a pattern in what she chooses? Once I finally realized what my son was doing, I was able to "work with it" to get him to eat. However, every meal I would put a plate of "regular" food in front of him just in case. And there were times when he surprised me and actually ate it.

 

As for waiting for a diagnosis, I believe it is still mostly a clinical diagnosis with the main correlation being that (esp the first time) the behavior changes were brought on by strep. What kind of tests are you waiting on?

 

Silly question, but did she recently have strep and go an antibiotics? And how long has this food issue been going on for? Did it start at the same time she was sick? For my son, I think it really got bad 1/2 way thorough a 10 day course of antibiotics (but his body was trying to beat back to back strep infections) and he wasn't eating normal again for....hmm....maybe a month?

 

My son also gets fixated on ideas. We go to the store and he sees a toy he wants. He announces he wants it added to his bday list. His bday isn't until Sept. Then he repeats himself over and over until we acknowledge him. Then he confirms that we are going to add it again. And makes us repeat what the item is so we don't mess it up. Now that he's been improving overall, that behavior is getting better too. That one seemed to be one of the ones the lasted the longest.

[Suzan]

My son went through a food strike entirely then slowly brought things back into his diet. I remember freaking out thinking they'd want to put him on an iv or feeding tube if it kept up too long. When he slowly added things it was first self contained foods, then cold foods, then cooked, and finally back to normal. I think issues with food can be expected with PANDAS. Anorexia is also associated with it. Do you see a pattern in what she chooses? Once I finally realized what my son was doing, I was able to "work with it" to get him to eat. However, every meal I would put a plate of "regular" food in front of him just in case. And there were times when he surprised me and actually ate it.

 

As for waiting for a diagnosis, I believe it is still mostly a clinical diagnosis with the main correlation being that (esp the first time) the behavior changes were brought on by strep. What kind of tests are you waiting on?

 

Silly question, but did she recently have strep and go an antibiotics? And how long has this food issue been going on for? Did it start at the same time she was sick? For my son, I think it really got bad 1/2 way thorough a 10 day course of antibiotics (but his body was trying to beat back to back strep infections) and he wasn't eating normal again for....hmm....maybe a month?

 

My son also gets fixated on ideas. We go to the store and he sees a toy he wants. He announces he wants it added to his bday list. His bday isn't until Sept. Then he repeats himself over and over until we acknowledge him. Then he confirms that we are going to add it again. And makes us repeat what the item is so we don't mess it up. Now that he's been improving overall, that behavior is getting better too. That one seemed to be one of the ones the lasted the longest.

 

Thanks Vickie, you ask some good questions! I don't know about food patterns but I do know I feel it's better and then it will get worse. She'll start to eat all kinds of things and then she'll get stuck on something and go back to all carbs and start eliminating again. She did recently go on antibiotics and I think she had strep but she was not swabbed. Her food issues though started getting bad I think the last time she had confirmed strep in February. Since then, she had strep again and the flu and then this last round of "maybe". I know that the antibody tests don't diagnose pandas but that's where we started on May 1st when I had never heard of pandas before. I don't know this doc well enough yet to know what he really thinks of these antibody tests but I'm gathering so much information to talk to him about after he gets these test back....

 

Today he drew these tests:

 

AntiDNASE B

ASO

Zinc

ESR (I googled this one and it says it stands for erythrocyte sedimentation rate. It is a nonspecific screening test that indirectly measures how much inflammation is in the body.)

CPS - 345-40 - anyone know what this one is? It might be CP5?

 

Thanks to you too for your stories about your son. These stories are helping me feel like I am going in the right direction.

 

Susan

[thereishope]

To add, decision making became VERY hard for my son. He would stare in his dresser full of clothes for an hour. Yet he wouldn't let us even hint to him what to wear. Also, he still has his little ruts in food decisions. Every morning, it has to be strawberry applesauce, every meal, apple juice. Almost every day it seems at least one meal is a grilled cheese. That's when I just make sure it's unsweetened applesause, unprocessed cheese, etc. My son is 5. Right now, I think it has just become habit for him.

 

Do you let her prepare food for herself? My son would always eat more if HE got to make his own sandwich. Granted, it's messier, but it got him to eat! Also, take her shopping with you and on the sly say "hm. I wonder if I should buy this" What do you think?". Don't ask her an open ended questions like what do you want. Point things out. But if you notice she's not interested, don't push it.