Intrusive/obsessional worries with a need to confess

[NancyD]

Hi Dawn,

 

Welcome to the forum! Back when my daughter had her first PANDAS episode (age 3) it looked more like perseverate behavior commonly associated with ASD, which made sense since she had ASD. But what she has been experiencing in the past year or two (at age 13) is very different. At first she had the obsessions but no cumpulsions. But now she has both. This is definitely closer to traditional OCD though I know it's associated with the PANDAS.

 

As your son goes through prepubescent years and into puberty you may find the quality and intensity of the symptoms change over time. Unless, of course, you are able to eradicate the symptons before then. I thought I read in a previous post of yours that you were going to do IVIG? I hope it is successful for you!

 

I don't know why the infusions have helped with most of the symptoms but not OCD. It's possible that the OCD will be the last thing to fade.

 

Nancy

 

Nancy-

 

New to the forum. I immediately thought of OCD. What we have learned about our son is that the OCD symptoms are not the classic kind most of us probably use to think was of as OCD. Perseverative thinking/perseveration is more of what we deal with our 10 yo son.

 

Best wishes.

 

Dawn

[NancyD]

Today was SO MUCH better since she had her Motrin 3x today. I think a big part of the problem is that she had braces put on her teeth a month ago and she's still not used to them. Often times she skips lunch at school and the nurse won't give her Motrin if she does that. The lack of food in her stomach may be a big contributing factor to the recent mood dysregulation. I just hope skipping meals does not become a regular thing and then that turns into an eating disorder. It's strange how these symptoms keep morphing into something new!

 

Nancy

[ShaesMom]

Today was SO MUCH better since she had her Motrin 3x today. I think a big part of the problem is that she had braces put on her teeth a month ago and she's still not used to them. Often times she skips lunch at school and the nurse won't give her Motrin if she does that. The lack of food in her stomach may be a big contributing factor to the recent mood dysregulation. I just hope skipping meals does not become a regular thing and then that turns into an eating disorder. It's strange how these symptoms keep morphing into something new!

 

Nancy

 

 

Hi Nancy,

 

My dd7 stopped eating lunch at school last year when she was in the middle of her worst Pandas episode. She had IVIG this summer so we were hopeful that she would eat this year--guess what--she still won't eat her lunch at school with the exception of a few cookies or crackers. I went and had lunch with her one day to assess the situation and found that she was eating VERY SLOWLY. I have started sending only a sandwich and 1-3 small cookies or chips with her. She still comes home with half her lunch in the sack.

 

Last year her pattern was eating 5 mini pretzels and that was it. This year started with the half dozen cookies/crackers and nothing else. Today I seriously considered sending ONLY the sandwich but then I was concerned that she wouldn't eat anything at all.

 

Pandas comes with an anorexia component to it. We are not sure when her Pandas started but we think it may have been around age 2 when she first started self limiting the foods she would eat. She has done this two additional times since the initial time. She has a severe food allergy so her diet is already extremely restricted.

 

Sam

[NancyD]

Hey Sam,

 

I do know about the anorexia and that's what worries me. I have been emailing the school nurse and her counselor to enlighten them about it. Now that you mention Shae's eating pattern with school lunch I should ask them to monitor how much lunch Sarah is eating when she does eat. I bet she's doing the same thing!

 

Will Shae eat at home? Sarah seems to do fine at home. It's just school where the problem is.

 

For years Sarah was allergic to soy and highly intolerant to gluten and dairy. By 7 her diet was mostly rice-based -- though she ate fruits, vegetables, and some meats. However, she craved anything with yeast. She used to drink balsamic vinegar straight from the bottle if I turned my back! Naturally, she turned up intolerant to rice and yeast. That is when I started her on a rotational diet and we started her with monthly glutathione IVs. After 2 years of glutathione IVs we tested her again and she was no longer allergic or intolerant to any foods. Since then she's been on Pen VK and my guess is she may be intolerant to yeast again.

 

Nancy

 

Hi Nancy,

 

My dd7 stopped eating lunch at school last year when she was in the middle of her worst Pandas episode. She had IVIG this summer so we were hopeful that she would eat this year--guess what--she still won't eat her lunch at school with the exception of a few cookies or crackers. I went and had lunch with her one day to assess the situation and found that she was eating VERY SLOWLY. I have started sending only a sandwich and 1-3 small cookies or chips with her. She still comes home with half her lunch in the sack.

 

Last year her pattern was eating 5 mini pretzels and that was it. This year started with the half dozen cookies/crackers and nothing else. Today I seriously considered sending ONLY the sandwich but then I was concerned that she wouldn't eat anything at all.

 

Pandas comes with an anorexia component to it. We are not sure when her Pandas started but we think it may have been around age 2 when she first started self limiting the foods she would eat. She has done this two additional times since the initial time. She has a severe food allergy so her diet is already extremely restricted.

 

Sam

[thereishope]

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Edited October 18, 2016 by vickie

[dcmom]

My dd (age 5 at the time) also had food issues during her exacerbation. For her, she would be hungry, but nothing was palatable. All of her favorites and old- standbys no longer tasted good to her. The only thing she could tolerate were pancakes with syrup, and some fruit. She had them for bkfast and dinner almost every night for a month. At first, I tried to get some other things in her- but then I just let go (like I did with lots of stuff), because she was getting enough in calories. Once on zithromax for a few weeks, the appetite (or liking of foods) came back. It is scary!

 

Nancy- my dd also hated brushing her teeth during her exacerbation. She is fine with it now. I don't really know why. Maybe you could give her some foods for lunch, where she wouldn't have to brush untill she comes home? Just to get her back into a routine of eating during school...

[ShaesMom]

Hi Nancy

 

Last spring when she was really sick she would not eat breakfast - I'm assuming because of the anxiety before school - or lunch. she would eat dinner but it was never a full meal. She lost 5 pounds in a matter of weeks and weighing only 40 pounds it was significant.

 

We have had several breakdowns in restaurants where she has had a panic attack and wanted to leave immediately. She seems to think she is going to get physically sick. She has also told us she does not want to eat out anymore period.

 

She is doing better eating breakfast so far this year. When she comes home from school she is starving! At first, I packed more options or more of the one food I noticed that she was eating in the hopes that she would eat more but that plan hasn't worked. So, I have gone to packing only a sandwich or protein source and very few of the cookies/crackers in the hope that she would at least eat some of the sandwich when the cookies were gone. It seems to be somewhat working. I also count everything that I pack so I have a good idea of how much she has actually eaten. Luckily for me she doesn't throw anything away-just brings it home. We've tried tying a monetary reward to eating everything in her lunch but that only worked for one day.

[peglem]

I wonder how much, if any, the eating environment at school has to do with it. Many are very "busy" from a sensory standpoint- echo-ey sounds, harsh lighting, little bodies moving to and fro...just a thought.

[EAMom]

It seems like there are several reasons why a Pandas child might have anorexia:

 

1) distorted body image, fear of weight gain, fear of being fat--akin to the "traditional" anorexia nervosa we see in teens. This is what my dd (at age 7.5 years). had Spring 08.

2) fear of choking (as Dr. K. mentions on his website)

3) contamination fears

4) altered taste sensation (and other sensory issues): my dd had this (briefly) post IVIG (perhaps part of turning back the pages?). "Things that should taste good didn't." and "My taste buds aren't working right." Diana's son had this same symptom when his pandas was at its worst.

5) ???? other suggestions

 

NancyD...we have always found Advil/motrin to be helpful for our dd's pandas symptoms. It probably does something for sore mouth due to braces as well!

 

I would say the anorexia nervosa was the biggest (by far) nightmare in our whole PANDAS journey. The tantrums/emotional stuff, aggression, school issues, other ocd, really had nothing to compare to the horror of having your kid starve themselves before your eyes.

 

re lunch: After my dd was hospitalized (March 08) for malnutrition/anorexia nervosa, for a couple of months I drove to school everyday to pick her up for lunch...to make sure she ate.

 

Peglem...the eating environment at my kids school is horrible. Our younger dd has a hard time (esp.) b/c she is a fairly slow eater. Her friends eat quickly and then she feels rushed and doesn't eat much.

[thereishope]

.

Edited October 18, 2016 by vickie

[NancyD]

Bingo...that's it, Vickie. I asked her this evening after reading your post and she admitted it to me. She doesn't want to have to brush her teeth!

 

Thanks Vickie!!

 

Nancy

 

The braces could be a factor too. Could it be she is avoiding brushing her teeth at school? She knows if she doesn't eat,she doesn't have to brush?

[NancyD]

I really didn't think this was the problem as she LOVES to eat. That's why this baffled me. But when Vickie suggested that maybe she is trying to avoid brushing teeth mid day --figuring if she doesn't eat she doesn't have to brush her teeth -- that sounded more like my daughter! So I asked her and she had this big smile on her face. I think I will try and find something she can eat if she is so busy that she doesn't want to brush afterwards. Great idea. Thanks dcmom!

 

Nancy

 

My dd (age 5 at the time) also had food issues during her exacerbation. For her, she would be hungry, but nothing was palatable. All of her favorites and old- standbys no longer tasted good to her. The only thing she could tolerate were pancakes with syrup, and some fruit. She had them for bkfast and dinner almost every night for a month. At first, I tried to get some other things in her- but then I just let go (like I did with lots of stuff), because she was getting enough in calories. Once on zithromax for a few weeks, the appetite (or liking of foods) came back. It is scary!

 

Nancy- my dd also hated brushing her teeth during her exacerbation. She is fine with it now. I don't really know why. Maybe you could give her some foods for lunch, where she wouldn't have to brush untill she comes home? Just to get her back into a routine of eating during school...

[NancyD]

Great thought...though in my daughter's case I knew this wasn't an issue since she is in a small private school -- only 6-8 kids per class and there are only about 30 kids in the middle school. Very few sensory issues there. Thanks Peglem!

 

Nancy

 

I wonder how much, if any, the eating environment at school has to do with it. Many are very "busy" from a sensory standpoint- echo-ey sounds, harsh lighting, little bodies moving to and fro...just a thought.

[Megs_Mom]

To add to the list above, 5. Fear of getting sick from eating - fear of throwing up. My daughter went through a variety of fears - from eating too much sugar, to eating without her safe person with her (mostly me), etc.

 

She also could not eat in "unsafe" restaurants for a while - it was quite frightening. We find this fades when PANDAS fades, and we do EPR during episodes to help. We worry that if this keeps coming back, even with treatment, she needs to be able to cope. It does help - although we are helping that we can shorten the next episode through steriods and anti-biotics. So far, she has had about 10 months, in 3 episodes, where this has been very intense. It is always related to food for us, and that is the scariest part.

 

Susan (Meg's mom)

[NancyD]

Yikes...how scary, EAMom! I know my daughter would like to lose some weight so this did concern me. Her teeth are not really hurting right now but the Motrin works wonderfully for her OCD issues. It's my new best friend! The key, I have discovered, is that she MUST take it 3x daily. Too short a half life!

 

Nancy

 

It seems like there are several reasons why a Pandas child might have anorexia:

 

1) distorted body image, fear of weight gain, fear of being fat--akin to the "traditional" anorexia nervosa we see in teens. This is what my dd (at age 7.5 years). had Spring 08.

2) fear of choking (as Dr. K. mentions on his website)

3) contamination fears

4) altered taste sensation (and other sensory issues): my dd had this (briefly) post IVIG (perhaps part of turning back the pages?). "Things that should taste good didn't." and "My taste buds aren't working right." Diana's son had this same symptom when his pandas was at its worst.

5) ???? other suggestions

 

NancyD...we have always found Advil/motrin to be helpful for our dd's pandas symptoms. It probably does something for sore mouth due to braces as well!

 

I would say the anorexia nervosa was the biggest (by far) nightmare in our whole PANDAS journey. The tantrums/emotional stuff, aggression, school issues, other ocd, really had nothing to compare to the horror of having your kid starve themselves before your eyes.

 

re lunch: After my dd was hospitalized (March 08) for malnutrition/anorexia nervosa, for a couple of months I drove to school everyday to pick her up for lunch...to make sure she ate.

 

Peglem...the eating environment at my kids school is horrible. Our younger dd has a hard time (esp.) b/c she is a fairly slow eater. Her friends eat quickly and then she feels rushed and doesn't eat much.