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PANDAS or Tourettes?


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So I spoke to my son's Psychiatrist (the one who diagnosed him with Tourette's) about his younger sister's sudden onset of symptoms and she said, "Well, Tourette Syndrome runs in families." :(

 

When I suggested PANDAS, she said, "Well, no matter what the cause, the treatment is the same." Meaning talk therapy mixed with psychiatry medications. While those things have helped my son, I do not agree with her that that's the correct way to treat PANDAS.

 

Hoping the Pediatrician will be more helpful on Tuesday.

 

I think we have all heard this response at one time or another. I say NO NO NO the treatment is not completely the same and the differences can be huge. YES talk therapy (CBT/ERP) works for PANDAS and YES some kids need to go on psych meds... but talk therapy and pysch meds alone do not fix it. When our kids have a ramp up of symptoms it means there is an infection or some type of inflammation present and we need to figure out what that is and remove it (to the best of our ability) before we can expect talk therapy to work and before we mask it with psych meds. Once the infection is cleared, then we can think about standard measures.

 

I am very sensitive to this because I stopped looking for infections in my son after he had his tonsils out. He never had any strep throat and the docs all told me it didn't matter if it was PANDAS - we do the same thing. So I took him to CBT therapist for about 4 or 5 visits for two years in a row. He "suddenly" improved after4 or 5 visits each time (I thought it was becuase I was really good at following directions) NO! It was because it was spring and his sinuses had cleared!!

 

Two years later he had PANDAS symptoms plus joint pains, body aches, fatigue. I was told that now it was depression and he needed to go on SSRIs. It didn't look like depression to me - he really wanted to go and do things ... he just couldn't (I am not afraid to admit or seek help when my son is depressed). That was when I re-explored PANDAS and the PANDAS doc said "let's check his sinuses" ... and there was a huge mucocele (cyst) in his sinuses that was eroding the bone between his sinus and his eye. It was a scary mess!!!

 

Sudden onset of neuropsychiatric symptoms in kids with PANDAS signals an infection or inflammation somewhere in the body. Why would we ignore that? A high fever signals a sudden onset of infection or inflammation in the body and I am sure if a child had a 102 degree fever for a week or two straight the doctors would be doing every test possible to figure out what the problem was... .they would not say "Well... it really doesn't matter what's causing the fever - just give him ibuprofen or tylenol every day for the rest of his life while the infection rages on and he won't notice"... UGH

 

Sorry - that is my soapbox -

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X-posted with the Tourette's board-

 

My son, now 10, started ticcing at age 5. He was recently diagnosed with Tourette Syndrome. We've never connected his tics to a strep infection but his tics started after a long bout with Mycoplasma. Antibiotics really help him when he has a flare up of tics so it's hard to say. He also takes Intuniv and Zoloft and is doing quite well.

 

Last November, his younger sister started burping constantly and we thought it might be a tic but took her to the doctor in case it was acid reflux or something of that nature. To our surprise, she tested positive for Strep throat! She was treated with abx and the burping subsided. The burping is back in full force along with some OCD's (she has to burp 148 times before she falls asleep), she won't step on yellow lines, she's obsessed with time, she picks her fingers around the cuticles until they are bleeding and down to the meat) and just a few days ago, she started an eye tic. She's widening her eyes (how you look when your surprised!) and she does this randomly throughout the day.

 

I called the Pediatrician and she has an appt. next Tuesday to check for strep.

 

What are the odds??? Is it more likely to have 2 kids with Tourette's? How unlikely is it to have 1 child with Tourette's and 1 PANDAS child? Or could she and my son both be PANDAS?

 

I have 3 kids and am pregnant with my fourth. I'm terrified that since 2 out of the 4 have tics and OCD's that this might be genetic! Help!!

 

 

Tattoomom -- when youre daughter tested positive for strep, did she have the "Red throat" and/or any pain? My son is doing something similar and i'm wondering if i should take him in...Thanks.

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So I spoke to my son's Psychiatrist (the one who diagnosed him with Tourette's) about his younger sister's sudden onset of symptoms and she said, "Well, Tourette Syndrome runs in families." :(

 

When I suggested PANDAS, she said, "Well, no matter what the cause, the treatment is the same." Meaning talk therapy mixed with psychiatry medications. While those things have helped my son, I do not agree with her that that's the correct way to treat PANDAS.

 

Hoping the Pediatrician will be more helpful on Tuesday.

 

I think we have all heard this response at one time or another. I say NO NO NO the treatment is not completely the same and the differences can be huge. YES talk therapy (CBT/ERP) works for PANDAS and YES some kids need to go on psych meds... but talk therapy and pysch meds alone do not fix it. When our kids have a ramp up of symptoms it means there is an infection or some type of inflammation present and we need to figure out what that is and remove it (to the best of our ability) before we can expect talk therapy to work and before we mask it with psych meds. Once the infection is cleared, then we can think about standard measures.

 

I am very sensitive to this because I stopped looking for infections in my son after he had his tonsils out. He never had any strep throat and the docs all told me it didn't matter if it was PANDAS - we do the same thing. So I took him to CBT therapist for about 4 or 5 visits for two years in a row. He "suddenly" improved after4 or 5 visits each time (I thought it was becuase I was really good at following directions) NO! It was because it was spring and his sinuses had cleared!!

 

Two years later he had PANDAS symptoms plus joint pains, body aches, fatigue. I was told that now it was depression and he needed to go on SSRIs. It didn't look like depression to me - he really wanted to go and do things ... he just couldn't (I am not afraid to admit or seek help when my son is depressed). That was when I re-explored PANDAS and the PANDAS doc said "let's check his sinuses" ... and there was a huge mucocele (cyst) in his sinuses that was eroding the bone between his sinus and his eye. It was a scary mess!!!

 

Sudden onset of neuropsychiatric symptoms in kids with PANDAS signals an infection or inflammation somewhere in the body. Why would we ignore that? A high fever signals a sudden onset of infection or inflammation in the body and I am sure if a child had a 102 degree fever for a week or two straight the doctors would be doing every test possible to figure out what the problem was... .they would not say "Well... it really doesn't matter what's causing the fever - just give him ibuprofen or tylenol every day for the rest of his life while the infection rages on and he won't notice"... UGH

 

Sorry - that is my soapbox -

 

Hi Kim,

 

I'm so sorry to read about what you've gone through. I am amazed they thought of the sinus and found that cyst. I'm just curious what they did to get rid of the cyst? After they fixed that, did his symptoms improve/disappear? I have a strong feeling my son AND daughter have this and I feel paralyzed as to what to do, who to see first. Feeling very scared and overwhelmed. Thanks for sharing whatever you can.

 

Christy

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Hi Kim,

 

I'm so sorry to read about what you've gone through. I am amazed they thought of the sinus and found that cyst. I'm just curious what they did to get rid of the cyst? After they fixed that, did his symptoms improve/disappear? I have a strong feeling my son AND daughter have this and I feel paralyzed as to what to do, who to see first. Feeling very scared and overwhelmed. Thanks for sharing whatever you can.

 

Christy

 

Hi Cindy - the cyst was actually a mucocele - which is a type of cyst that occurs when the mucosal lining pinches off and makes something like a water balloon - but it is filled with mucus. As you can imagine, as the body produces mucus it gets larger and larger and eventually the sinus has to grow (remold) and / or erode to make room for it. Mucoceles are pretty rare in children - generally only seen in a child who has had sinus surgery (my son had 2 sinus surgeries prior to this). BUT sinusitis is not rare, and many kids have chronic sinusitis without anyone realizing it. Children with PANDAS symptoms should be checked for siniusitis if you cannot figure out where the infection is.

 

My son had surgery to drain the mucocele and remove the lining. They did not do any reconstruction at the time and there is a "fat pad" between his sinus and his eye - not a bone. His PANDAS symptoms did subside after the mucocele was removed and he was clear and doing well in school in September and October this year - but his sinusitis started up again in late October and we have been on a roller coaster ever since. He had IVIG in February and had a really bad couple of months after that, but he is starting to do well again. I am hoping the IVIG will keep his sinusitis at bay this year.

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Tattoomom -- when youre daughter tested positive for strep, did she have the "Red throat" and/or any pain? My son is doing something similar and i'm wondering if i should take him in...Thanks.

 

No! She never complained that her throat hurt at all. I can't remember if the doctor said it was red or not. The only thing she had along with the burping was she felt nauseous. Honestly, I took her in thinking it was acid reflux. I never dreamed it was strep!

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