Is PANDAS a subset of Tourettes or of OCD?

[pixiesmommy]

spd/sid sensory processing disorder / sensory integration disorder

[mama2alex]

Diagnosed with OCD - no tics.

[monarchcat]

[Wow I gues we are one of the few kids with tics but no OCD

 

My son has predominantly tics as well, coupled with behavioral/anxiety issues. I am just realizing now that he has some underlying ocd issues, but they are only with his thinking.. he gets very "stuck" on things, usually an argument. I have always used the word "compulsive" when I spoke of how he argued with me, but never really considered it to be a manifestation of OCD. I see now that it's there, but the OCD aspects are very mild compared to other kids.

 

His CAM score at 193 puts him up near the SC kids, so I guess that reflects the fact that he is more TIC and less OCD.

[MMC]

both our kids started with tics...daughter's have been milder (for 8 yrs now)...son's have been very severe at times (since this April). He also shows some OCD. His cam score is 197. Daughter is ADD, but has gotten better w/ meds and age. Her cam score is 183. Son is the one we worry about, he is really struggling. Have had phone consult with Dr Latimer and appointment to see her next month. I was diagnosed with Sydenham's Chorea when I was seven, but it was really more like pandas, I believe. Both are the same thing, probably. I had very little, if any OCD. So, my kids are following my pattern. My sister had mild tics growing up, very much like our daughter.

[nevergiveup]

Hi MMC,

When you were younger with SC, how many times did you relapse??? I have heard that SC can return when you are pregnant? At what age did you start feeling better? Since my child has both tics, chorea and 0CD, two big attacks I am always looking for hopeful outcomes??? Thanks

 

 

both our kids started with tics...daughter's have been milder (for 8 yrs now)...son's have been very severe at times (since this April). He also shows some OCD. His cam score is 197. Daughter is ADD, but has gotten better w/ meds and age. Her cam score is 183. Son is the one we worry about, he is really struggling. Have had phone consult with Dr Latimer and appointment to see her next month. I was diagnosed with Sydenham's Chorea when I was seven, but it was really more like pandas, I believe. Both are the same thing, probably. I had very little, if any OCD. So, my kids are following my pattern. My sister had mild tics growing up, very much like our daughter.

[Suzan]

Have you heard the phrase "absent seizure"? It's not a gran mal seizure that you see on TV. It's like they are doing something, blank out for a few seconds, then return back to what they are doing like nothing had happened. My son has them and it's very hard to distinguish that from inatatention. But if you look on you tube you can see some examples that have been posted. Of course an EEG didn't show anything. The other thing I notice is that my son gets very bad behaviours right before and it's like the absent seizure resets him. This may not be what your son has, but it might be worth looking at.

 

My 6 yr old had similar seizures but they did show up on an EEG. They were general seizures where she did not convulse but she would stare off for 7-10 seconds. She was having 100's a day but they would not show up visually unless they got over 4 seconds long. She was on seizure medication for a year and then got a normal EEG. She is now seizure free and med free. We believe that her seizures were caused by gluten intolerance or possibly celiac and now that she is gluten free, they are gone. Just thought I would mention in case it's somehow helpful.

 

Susan

[MMC]

Hi MMC,

When you were younger with SC, how many times did you relapse??? I have heard that SC can return when you are pregnant? At what age did you start feeling better? Since my child has both tics, chorea and 0CD, two big attacks I am always looking for hopeful outcomes??? Thanks

 

 

both our kids started with tics...daughter's have been milder (for 8 yrs now)...son's have been very severe at times (since this April). He also shows some OCD. His cam score is 197. Daughter is ADD, but has gotten better w/ meds and age. Her cam score is 183. Son is the one we worry about, he is really struggling. Have had phone consult with Dr Latimer and appointment to see her next month. I was diagnosed with Sydenham's Chorea when I was seven, but it was really more like pandas, I believe. Both are the same thing, probably. I had very little, if any OCD. So, my kids are following my pattern. My sister had mild tics growing up, very much like our daughter.

 

Hi nevergiveup,

I never really had a relapse from SC...I just outgrew it slowly. I am a male, so can't speak for the pregnancy part. Both of my parents have passed away, so I cannot ask my mother about my history, and it is a bit foggy. I remember most issues were in the first 4 or 5 years. At puberty, and after, my tics really started to diminish. Most people would never know I even had them. At age 15 or 16, I certainly had no issues at school, or taking drivers ed, for example. I was on intramuscular bicillin for 10 years (those monthly shots hurt!), then on Pen VK a couple of years after that into college...this did its job and did not get strep again. I have a few tics into adulthood, but they don't bother me much...no OCD to speak of (never struggled with that much). So, after puberty, I have led a normal life...and never had steroids, IVIG or PEX. So, yes there is great hope, which I have for my kids. I was never told this mess could be passed to my kids. So, have been a bit shocked, but I understand what they have, at least to a certain degree.

[P_Mom]

That makes two male success stories of remmitance after puberty that I know of !!

[nevergiveup]

Hi, Thanks MMC. Sorry about the pregnancy question. Dr. Latimer is very helpful. I hope your son gets better soon. My daughter recently had a bad episode mostly tics, never really had tics before that were noticeable but now does. She's 13, beautiful girl inside and out, she goes to school everyday with so much enthusiasm. She loves tennis, figure skating and all her friends. Her most recent attack with chorea took her off the ice for all summer. Its good to hear your success and your daughters. Although we may have been part of the genetic reason why our kids have PANDAS we are not the environmental cause. Most autoimmune diseases have a genetic side and an environmental trigger. I believe the excessive immunizations on our kids has altered their immune systems and their blood brain barriers. Denmark just posted results that TS was on the rise. Im sure it is in the US also, so is ADHD, OCD, and autism. Many studies have been published implicating all of these illness to antibodies and immune problems.

 

 

 

 

Hi MMC,

When you were younger with SC, how many times did you relapse??? I have heard that SC can return when you are pregnant? At what age did you start feeling better? Since my child has both tics, chorea and 0CD, two big attacks I am always looking for hopeful outcomes??? Thanks

 

 

both our kids started with tics...daughter's have been milder (for 8 yrs now)...son's have been very severe at times (since this April). He also shows some OCD. His cam score is 197. Daughter is ADD, but has gotten better w/ meds and age. Her cam score is 183. Son is the one we worry about, he is really struggling. Have had phone consult with Dr Latimer and appointment to see her next month. I was diagnosed with Sydenham's Chorea when I was seven, but it was really more like pandas, I believe. Both are the same thing, probably. I had very little, if any OCD. So, my kids are following my pattern. My sister had mild tics growing up, very much like our daughter.

 

Hi nevergiveup,

I never really had a relapse from SC...I just outgrew it slowly. I am a male, so can't speak for the pregnancy part. Both of my parents have passed away, so I cannot ask my mother about my history, and it is a bit foggy. I remember most issues were in the first 4 or 5 years. At puberty, and after, my tics really started to diminish. Most people would never know I even had them. At age 15 or 16, I certainly had no issues at school, or taking drivers ed, for example. I was on intramuscular bicillin for 10 years (those monthly shots hurt!), then on Pen VK a couple of years after that into college...this did its job and did not get strep again. I have a few tics into adulthood, but they don't bother me much...no OCD to speak of (never struggled with that much). So, after puberty, I have led a normal life...and never had steroids, IVIG or PEX. So, yes there is great hope, which I have for my kids. I was never told this mess could be passed to my kids. So, have been a bit shocked, but I understand what they have, at least to a certain degree.