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Hi everyone,

Here is where we are at this time - would love some input. I started on here in January with my twin DS 15 exhibiting tic and OCD behaviors, four years after originally diagnosed PANDAS blowup and four years of only minor eye blinking type tic, nothing major. So far we have had 21 days of Augmentin (symptoms got worse), and now 21 of 30 day course of Penicillin, which we are trying because it worked the first time (four years ago, high strep ASO titers). DS seems slightly better to me and Dad, but when he is willing to talk about it, DS says no. Still having obsessive thoughts at school, on the soccer field, with friends. Tics are mostly facial/eye/head turning, and pretty regular. I and DS have noticed some days are better than others. Stress seems to affect it, but I wonder about diet and environmental things that TS forum discusses as exacerbating tics. Any thoughts on that anyone? Overall though, little or no improvement so far and I want to help him so badly. The whole thing is really interfering with his life and grades.

 

Tests: strep cultures, ASO and Dnase are not showing anything positive, Lyme antibodies tests were negative, but the Mycoplasma test results for both boys were as follows:

"PANDAS" DS IgG 2.14 , range is , .90 is negative, >1.1 is positive, IgM 571, range is <770 is negative.

Twin Brother IgG 2.662, IgM 148.

 

So, apparently this means they both have had a mycoplasma infection but not currently, correct? Does the 571 vs 148 indicate anything - in other words, even though it's in the negative range, it's so much higher than brother's.

 

My plan is to ask the Doctor to go to zithromax after the penicillin, since it hits mycoplasma. Does this make sense?

 

We have sent blood off to Dr. Cunningham. Their lab is slammed so we won't get anything back for at least six weeks. I'm not sure what we expect to get from the testing. Will this give us clear data that points to PANDAS?

 

Lastly, I'm scheduled for a conference with Dr. K on April 1.

 

"Funny doctor story" - I remember the thread of all the crazy things parents had heard from doctors in their search for answers. Well, I just got copies of DS's medical records from the former pediatrician. The letter the neurologist sent to him at that time, during DS's horrible PANDAs episode at age 11 was in the file. Neurologist says"Some consideration has been given to the possibility that this may be related to PANDAS. I understand a strep titer was performed which was positive. However strep titers are positive in a high % of children..... (later in letter), Parents exhibit mild features of obsessive compulsive behavior." Goes on to recommend therapy and Clonidine. WHAT? WE are OCD because we were in his office freaking out about our kid?????? Lots of children have high strep titers so don't treat this one???????

 

Anyway, that pissed me off. Then I just had to laugh. But lord knows, I'd like to write him now and tell him that the kid got back to 95% with ABX, which we started a week after the date of that letter.

Edited by HT's Mom
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Hi everyone,

Here is where we are at this time - would love some input. I started on here in January with my twin DS 15 exhibiting tic and OCD behaviors, four years after originally diagnosed PANDAS blowup and four years of only minor eye blinking type tic, nothing major. So far we have had 21 days of Augmentin (symptoms got worse), and now 21 of 30 day course of Penicillin, which we are trying because it worked the first time (four years ago, high strep ASO titers). DS seems slightly better to me and Dad, but when he is willing to talk about it, DS says no. Still having obsessive thoughts at school, on the soccer field, with friends. Tics are mostly facial/eye/head turning, and pretty regular. I and DS have noticed some days are better than others. Stress seems to affect it, but I wonder about diet and environmental things that TS forum discusses as exacerbating tics. Any thoughts on that anyone? Overall though, little or no improvement so far and I want to help him so badly. The whole thing is really interfering with his life and grades.

 

Tests: strep cultures, ASO and Dnase are not showing anything positive, Lyme antibodies tests were negative, but the Mycoplasma test results for both boys were as follows:

"PANDAS" DS IgG 2.14 , range is , .90 is negative, >1.1 is positive, IgM 571, range is <770 is negative.

Twin Brother IgG 2.662, IgM 148.

 

So, apparently this means they both have had a mycoplasma infection but not currently, correct? Does the 571 vs 148 indicate anything - in other words, even though it's in the negative range, it's so much higher than brother's.

 

My plan is to ask the Doctor to go to zithromax after the penicillin, since it hits mycoplasma. Does this make sense?

 

We have sent blood off to Dr. Cunningham. Their lab is slammed so we won't get anything back for at least six weeks. I'm not sure what we expect to get from the testing. Will this give us clear data that points to PANDAS?

 

Lastly, I'm scheduled for a conference with Dr. K on April 1.

 

"Funny doctor story" - I remember the thread of all the crazy things parents had heard from doctors in their search for answers. Well, I just got copies of DS's medical records from the former pediatrician. The letter the neurologist sent to him at that time, during DS's horrible PANDAs episode at age 11 was in the file. Neurologist says"Some consideration has been given to the possibility that this may be related to PANDAS. I understand a strep titer was performed which was positive. However strep titers are positive in a high % of children..... (later in letter), Parents exhibit mild features of obsessive compulsive behavior." Goes on to recommend therapy and Clonidine. WHAT? WE are OCD because we were in his office freaking out about our kid?????? Lots of children have high strep titers so don't treat this one???????

 

Anyway, that pissed me off. Then I just had to laugh. But lord knows, I'd like to write him now and tell him that the kid got back to 95% with ABX, which we started a week after the date of that letter.

 

Thanks for sharing this. Always good to read about other cases.

 

Not sure how much I can offer. All the testing we've done on our 15 yo son to monitor his condition is active infections and titers for Strep. His symptoms have steadily decreased along with his ASO since he was diagnosed and received treatment back in December. I'm pretty sure Cunningham's results are mostly for confirming PANDAS with some clinical support. Never hurts and "hats off" to you for being so thorough with all the testing. From what I've heard, you will be in good hands with Dr. K and he will be the best one to answer your questions about all the testing results.

 

I know Dr. K is not afraid of IVIg and I would guess that is what he'll recommend. That would be my only advice. I like starting with aggressive abx treatment, but wouldn't mess around longer than a couple of months without SIGNIFICANT results before going to IVIg. After treatment in December, our son is 95% and is only on Pen VK, vitamins, and fish oil right now. Have had him on max daily dosage of Ibuprofen until recently, but happy to report he is off that and only on fish oil to control inflammation now.

Edited by TexasDad
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It's maddening, isn't it? Dealing with doctors? I can relate to your experience (as many of us here can). The first doc we took my son to, in a complete panic because my son woke up one day with SEVERE and debilitating symptoms. He said he didn't see a thing wrong with our son, but we "need to see a psychiatrist." Wanted to throttle the guy.

 

 

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I would guess a good number of parents on here have some OCD. That actually probably plays a factor in the kids getting better.

 

 

 

"Funny doctor story" - I remember the thread of all the crazy things parents had heard from doctors in their search for answers. Well, I just got copies of DS's medical records from the former pediatrician. The letter the neurologist sent to him at that time, during DS's horrible PANDAs episode at age 11 was in the file. Neurologist says"Some consideration has been given to the possibility that this may be related to PANDAS. I understand a strep titer was performed which was positive. However strep titers are positive in a high % of children..... (later in letter), Parents exhibit mild features of obsessive compulsive behavior." Goes on to recommend therapy and Clonidine. WHAT? WE are OCD because we were in his office freaking out about our kid?????? Lots of children have high strep titers so don't treat this one???????

 

Anyway, that pissed me off. Then I just had to laugh. But lord knows, I'd like to write him now and tell him that the kid got back to 95% with ABX, which we started a week after the date of that letter.

Edited by Vickie
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