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Pandas

sugarsue

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sugarsue Enthusiast
sugarsue
Posted

Just wondering if anyone here has any experience with the autoimmune disease PANDAS with their children. Both my girls may have it and I am curious to talk to anyone who has children with this and gluten issues.

Thanks.

susan

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Pattymom Newbie
Pattymom
Posted

Yes, My 13 ds has PANDAS. His OCD started when he was 7, responded very well to CBT. Some social anxiety started to reemerge last spring, and following antoher strep throat infection this winter, the OCD came back in gangbuster form. He has been gluten free only since this Feb--his anxiety did improve some off gluten, but it didn't go away, He just began medication a few weeks ago b/c he wanted it.

Interestingly, he had lots of constant complaints of stomach aches, and gassiness when he was younger. When we started really talking about the OCD and treating it, he virtually stopped complaining about belly pain--I had assumed that it was caused by anxiety, though at that time, I had also started a elimination diet and cut our wheat ( not gluten) for a while, We hve only entered the gluten free world n earnest almost 5 years ago when dd #2 was born. I am the onl one officially diagnosed with celiac at this point, though the whole house is gluten free, and only one dd, 10, and my husband ever eat i outside of the house. She also has anxiety and selective mutism, which has made a lot of progress hrough some good software and treatment, though no traceable PANDAS diagnosis.

We do definetely see and increase in anxious behavior with gluten ingestion, though it, alas, did not cure ths issues.

Patty

sugarsue Enthusiast
sugarsue
Posted
  • Author
Yes, My 13 ds has PANDAS. His OCD started when he was 7, responded very well to CBT. Some social anxiety started to reemerge last spring, and following antoher strep throat infection this winter, the OCD came back in gangbuster form. He has been gluten free only since this Feb--his anxiety did improve some off gluten, but it didn't go away, He just began medication a few weeks ago b/c he wanted it.

Interestingly, he had lots of constant complaints of stomach aches, and gassiness when he was younger. When we started really talking about the OCD and treating it, he virtually stopped complaining about belly pain--I had assumed that it was caused by anxiety, though at that time, I had also started a elimination diet and cut our wheat ( not gluten) for a while, We hve only entered the gluten free world n earnest almost 5 years ago when dd #2 was born. I am the onl one officially diagnosed with celiac at this point, though the whole house is gluten free, and only one dd, 10, and my husband ever eat i outside of the house. She also has anxiety and selective mutism, which has made a lot of progress hrough some good software and treatment, though no traceable PANDAS diagnosis.

We do definetely see and increase in anxious behavior with gluten ingestion, though it, alas, did not cure ths issues.

Patty

Patty, thank you for your response! We have been helped so much by going gluten free but it has not solved all of our issues either. Tonight I am thinking one has pandas but my highly gluten intolerant dd, I just don't know. I don't see as much up and down with her so she may just have her issues that will hopefully continue to improve as she gets older. I just have to wait to get the test results and see what happens.

Susan

swalker Newbie
swalker
Posted

I suggest "Brain Allergies" by William Philpott. He is a practicing Psychiatrist that cured a variety of mental differences by elimatinating foods and/or environmental stimulants (like natural gas, mold etc).

Keeping a detailed food and behaviour diary may show some associations. Being that PANDAS seems to come on after an infection, I'd suggest probiotics as well to make sure they have lots of healthy flora. Specific blood testing for nutritional deficiencies may be very helpful too.

  • 1 year later...
Isabel's Mom Newbie
Isabel's Mom
Posted

Just wondering if anyone here has any experience with the autoimmune disease PANDAS with their children. Both my girls may have it and I am curious to talk to anyone who has children with this and gluten issues.

Thanks.

susan

Hi. My daughter has celiac disease and has been gluten free for a year and a half. She had strep throat 3 weeks ago and today I believe we figured out that she has Pandas. I have been online all day trying to find out everything I can about Pandas and would love to talk to you about what you have found out to date. Thanks for any help.

Cathy

Roda Rising Star
Roda
Posted

I can tell when my boys have a strep infection by their behavior. My youngest (almost 6) is on an antibiotic right now for strep. He had a slight sore throat about 5 days before I took him to the ped and the day I took him the only thing that was off was his "melt down" he had had that morning. Low and behold he had strep. He is on day 8 of his antibiotic and he had another "melt down" this morning. He threw himself on the floor and was having a temper tantrum. He woke up this morning fine and what set him off was his not wanting to wear his sandals. He has become rather fixated on his "sandals" and shoes in general over the last several months. I don't know if it could be PANDAS but his behavoir is definately not normal when he has strep.

Dixiebell Contributor
Dixiebell
Posted

Mystery Diagnosis had an episode on not to long ago called 'troublesome child' and they found out the child had PANDAS. If I am not mistaken, I think he had strep in his brain.

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  • 3 years later...
surviormom Rookie
surviormom
Posted

Yes, My 13 ds has PANDAS. His OCD started when he was 7, responded very well to CBT. Some social anxiety started to reemerge last spring, and following antoher strep throat infection this winter, the OCD came back in gangbuster form. He has been gluten free only since this Feb--his anxiety did improve some off gluten, but it didn't go away, He just began medication a few weeks ago b/c he wanted it.

Interestingly, he had lots of constant complaints of stomach aches, and gassiness when he was younger. When we started really talking about the OCD and treating it, he virtually stopped complaining about belly pain--I had assumed that it was caused by anxiety, though at that time, I had also started a elimination diet and cut our wheat ( not gluten) for a while, We hve only entered the gluten free world n earnest almost 5 years ago when dd #2 was born. I am the onl one officially diagnosed with celiac at this point, though the whole house is gluten free, and only one dd, 10, and my husband ever eat i outside of the house. She also has anxiety and selective mutism, which has made a lot of progress hrough some good software and treatment, though no traceable PANDAS diagnosis.

We do definetely see and increase in anxious behavior with gluten ingestion, though it, alas, did not cure ths issues.

Patty

How did you get through anxiety and selective mutism?

kareng Grand Master
kareng
Posted

How did you get through anxiety and selective mutism?

We hasn't been on the forum for a few years so you might not get an answer.

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