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Looking back, we believe that my daughter probably had a more mild PANDAS exacerbation around 3 yrs. It manifested itself in her inability to choose clothes...we thought she was being difficult. So, there was lots of crying, and just dressing her, and not letting her pick.

 

Also, she was insistent that her covers be a certain way on her bed. Blue blanket first, half-way up, with just the right wrinkle, the her princess blanket at the foot of the bed, folded so you could see the princess, another blanket to cover herself...she had to have a certain toy with her. If we didn't get it right...the crying was terrible.

 

Of course, at the time, we thought she was just being fussy. And at one point, we just threw our hands up, and said we were not giving in to her demands anymore...tons of crying the first night. But she did get more reasonable--so she was probably healing at this point? Who knows?

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Tampicc- Are you sure we aren't sharing the same son? I could have written your post nearly word for word, w/ just a few minor variations.

 

My DS6 has and had many ocd's that I did not recognize. I thought he was anxious. He hoards/collects the boxes that Dove bars come in. I have to secretly throw those away. He cannot leave the crayons and coloring paper that are given out at restaurants. He might need them. He's got a million crayons already.

 

He argues or corrects our speech/word usage, as well. We were recently told he was Aspergers and this was given as an example as being inappropriate.

 

He too makes up his own game rules. He fixes games so he will win.

 

He walks on lines, jumps over cracks, steps on certain tiles at the mall, walks on top of any short retaining type wall.

 

Sometimes doesn't want to leave the house. Sometimes has separation anxiety from me. When this all first started, it was severe.

 

DS is also ticcing now. I recently bought Tamar Chansksy OCD book and realized reading it that DS has had a few tics for many, many months now. He was wiping his lips earlier this year to the point of chapping/cracking them and wiping his chin on his shoulder. I thought he was too lazy to use a napkin. Turns out its tics. A couple of weeks ago, he began eye blinking and throat clearing which was unmistakable.

 

I love reading these details about other kids because its more reassuring to me when I am doubting myself and what is really going on w/ him. His titers are normal. We are drawing blood on Mon for the Cunningham test.

 

Cindy

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This sounds like a very advanced/precocious/gifted child, not one with PANDAS. These behaviors are not typical for a 5 year old- especially the advanced drawing!! Collecting things is very typical for age 5.

 

Does your child have vocal or motor tics that go along with this sfuff as well?

 

 

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Actually, my son's drawings stayed rather intricate even during exacerbations. He was 5 years old as well. He'd spend over an hour+ drawing, then there were times he would either take scissors and cut up the picture, or he would then take a black crayon and color over all the work saying it was night time in the picture. My son keeps everything he creates. He says he loves all of them. I believe him. He puts his heart and soul into them. As for the scraps your son keeps, that's hoarding.

 

My son also had a time when he became near agorophobic. I saw the foreshadowing of it and then started to force him out the house. Literally picking him up and forcing him. I would sit in the backseat while my husband drove to make sure he didn't unbuckle himself trying to get out of the car and get home. When out, does your son insist on wearing a hat or hood? That was my son's transition crutch when overcoming staying home all the time.

Edited by Vickie
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My ds7 gets words and numbers stuck in his head if he hears someone else say them. Especially anything repetitive. Then he can't think about anything else, and it interferes with his ability to think clearly. This often precipitates a rage or meltdown. He won't shower or brush his teeth. He won't change clothes. He won't get a haircut. He gets extremely upset about any and every change - new furniture, new anything, change in routine, etc. When he was 5 he was threatening to jump off the roof so he wouldn't have to turn 6 because he wanted his number to stay 5. He is afraid of poison, germs, chemicals. He has phobias - monsters & ghosts that he insists are real, and especially spiders and bees. He refuses to touch certain people, mostly everyone outside our immediate family, as well as one of his brothers. He often can't go into the bathroom, sometimes can't even go outside of our house. Once in the bathroom he will not sit on the toilet (hasn't in 3+ years). He strips naked and stands on the toilet seat, squats and hovers there for 45 mins plus. He always thinks he doesn't have all his poop/pee out and sometimes stays in the bathroom screaming. Sometimes he refuses to wipe himself. Other times he wipes until he bleeds. He is very worried about contamination from feces. He refuses to go in our barn or even the barnyard (we live on a farm). He screams whenever someone coughs or sneezes and he doesn't think they did a good enough job covering. He goes into hysterics if he gets mud or ink or anything else on his hands. He literally hyperventilates then begins shrieking at the top of his lungs over and over, starts shaking, and loses it. Not sure what else, but those are all on my mind right now...Can you tell he's in exacerbation??!

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Well, if it makes you feel any better, my son actually had a lot of what you listed. He was fixated on the number 4, he threated to jump out of the window and throw himself down the stairs, he refused to touch his younger sister since she was contaminated according to him, bees was a bad one, He had hallucinations about bugs twice, as for the bathroom, he was different in that his thing was he didn't want to wipe himself since he didn't want to touch the poop ( once I realized what was going on, I did not participate), he also was once convinced poop got in his mouth (it didn't) and that he couldn't get it all out. That was a fun one since it occured at a relative's house. As for the contamination...oh, yes...the shrieking, eye bulging, red in the face if he even thought you touched your face or mouth. With how he was with his sister especially....it was bad. If he thought you touched her, he would freak.

 

Positive....he's better now. None of that remains. Never give up hope.

 

 

My ds7 gets words and numbers stuck in his head if he hears someone else say them. Especially anything repetitive. Then he can't think about anything else, and it interferes with his ability to think clearly. This often precipitates a rage or meltdown. He won't shower or brush his teeth. He won't change clothes. He won't get a haircut. He gets extremely upset about any and every change - new furniture, new anything, change in routine, etc. When he was 5 he was threatening to jump off the roof so he wouldn't have to turn 6 because he wanted his number to stay 5. He is afraid of poison, germs, chemicals. He has phobias - monsters & ghosts that he insists are real, and especially spiders and bees. He refuses to touch certain people, mostly everyone outside our immediate family, as well as one of his brothers. He often can't go into the bathroom, sometimes can't even go outside of our house. Once in the bathroom he will not sit on the toilet (hasn't in 3+ years). He strips naked and stands on the toilet seat, squats and hovers there for 45 mins plus. He always thinks he doesn't have all his poop/pee out and sometimes stays in the bathroom screaming. Sometimes he refuses to wipe himself. Other times he wipes until he bleeds. He is very worried about contamination from feces. He refuses to go in our barn or even the barnyard (we live on a farm). He screams whenever someone coughs or sneezes and he doesn't think they did a good enough job covering. He goes into hysterics if he gets mud or ink or anything else on his hands. He literally hyperventilates then begins shrieking at the top of his lungs over and over, starts shaking, and loses it. Not sure what else, but those are all on my mind right now...Can you tell he's in exacerbation??!

Edited by Vickie
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I have just been wondering if these other things he does were OCD, or just "him." They don't debilitate him, but I noticed that some of it might be similar to OCD symptoms, and was wondering. He doesn't have fear of contamination or intrusive thoughts, which seem to be more typical of PANDAS kids, right?

 

 

tampicc -- my son was 4 1/2 at onset and when the behavorist suggested pandas b/c "what you're describing sounds like OCD, but he's awfully young" i had absolutely no idea that anything i was saying sounded like OCD. honestly, even with what i know of OCD today -- it still doesn't sound so much like it. for him, it was NOT contamination fears or intrusive thoughts. it was more behavioral stubborness and asperger-like stuff.

 

i can see now (2 yrs later) how stubborness can be OCD -- for him, i think some may be and some may be sensory. i am very curious about the line between those two. we've now gotten to a point where he usually can say "there's no reason" and it usually does seem sensory, "there's a reason but i don't want to say" possibly/probably OCD, and "there's a reason that no one can ever, ever know" -- during intense herx-like reaction to an anti-viral resulting in textbook contamination non-eating fears that we'd never seen before. luckily, lasting only about a week.

 

your descriptions similar to my son:

 

your description of collecting, does sound like hoarding to me. my son has done this is short spurts with exacerbations. it's not a major thing for him, but he has done it.

 

the semantics is a big thing for him. he says, "you mean . . .". one of the things i wonder about with 'just right ocd' vs. sensory -- for him, i don't think it's OCD, there's doesn't seem to be anything else attached to it. it kind of seems like he can process it better in his form.

 

at onset, anyone drawing, writing, coloring just the exact way he wanted was big. one time had a big argument with me wanting me to color spiderman exactly the way he said. this caused problems in school with 'correcting' other kids. teacher couldn't get that he wasn't really 'bullying' others, so resulted in much frustration for her, no techniques for him.

 

trouble with games is big. in exacerbation, rules and winning is troublesome. when healthy, he's a very enjoyable player. is actually a good gauge for us.

 

so yes, to me, what you describe i believe to be pandas-related.

 

are you just curious if these are pandas-related or are you having trouble dealing with the behaviors? if you are and you want, i have some good resources i've found to be very helpful

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I also could have written this post myself. As I was reading through it, it was describing many of my son's exact behaviors. It is very strange to me how similar they are. My son is in 2nd grade. I am new to this board/website and I can't tell you how nice it is to know that there are others out there that know what we are going through.

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Positive....he's better now. None of that remains. Never give up hope.

 

Wow, thanks so much Vickie! They do sound similar. Do you mind sharing what treatment(s) have led your ds to wellness? We are just at the beginning of this journey. We only heard about PANDAS in August and I began to realize how much of ds's behaviour is OCD. He has high ASO, and cunninghams at 176, so now I'm convinced we're dealing with PANDAS. We just started prophylactic antibiotics (500mg/day amoxicillin, which is NOT helping). We have a consult with Dr. T on Tuesday and I"m anxious to know what he will suggest.

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My son was on penicillin for one year. In September he was switched to augmentin XR 2000mg/day and we saw dramatic improvements. We went a solid 2 weeks without any symptoms at all (no tics, ocd behaviors, mood swings, etc...). He has now caught a virus and some kids in his class have been diagnosed with strep so we are seeing some regression but hoping that will all subside after the illness! In addition to the augmentin XR he is taking tenex, omega-3 and flaxseed.

 

 

 

 

Positive....he's better now. None of that remains. Never give up hope.

 

Wow, thanks so much Vickie! They do sound similar. Do you mind sharing what treatment(s) have led your ds to wellness? We are just at the beginning of this journey. We only heard about PANDAS in August and I began to realize how much of ds's behaviour is OCD. He has high ASO, and cunninghams at 176, so now I'm convinced we're dealing with PANDAS. We just started prophylactic antibiotics (500mg/day amoxicillin, which is NOT helping). We have a consult with Dr. T on Tuesday and I"m anxious to know what he will suggest.

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