Behavioral changes around others?

[LaraM]

My son is five. He started OCD/anxiety behaviors in late November 2009. We have seen a range of behaviors, beginning with extreme anxiety and crying jags lasting a couple hours, obsessive hand washing (even waking at 3:00 am to do it 3x's), pacing, now most recently asking permission to do certain behaviors or series of things. At first it was hand rubbing, picking fingers or toes, now it's three things at once (example: can I sit like this, pop bubbles in my mouth and position my hand like this). Sometimes he will ask me as many as 2-3 times per minute. Other times, he can manage to get distracted with other things and only ask once an hour or so. Our pediatrician felt like he had PANDAS, but isn't convinced because his titers were in the "normal" range (no numbers were provided). Initially, he put him on antibiotics, and we saw a tremendous improvement in symptoms (they were essentially gone while on abx.). Anyway, he wouldn't prescribe additional abx. because of the titer issue, but he is going to participate in Dr. Murphy's clinical trial (hopefully next week will be the first visit--we were delayed because he has croup right now). Here are some questions though:

 

Last weekend, my husband and I had to go out of town for a funeral. My in-laws (who are ABSOLUTELY AWESOME), kept the boys. My son had no symptoms while we were gone--other than mood swings and anger outburst a couple times. I had warned them that he may have to ask to do certain behaviors, but he abstained the whole time. We weren't in the house for 10 minutes before he started asking me all over again. I am the only one that he asks--not my husband, older son, or in-laws apparently. I don't know if he paced and they didn't really pick up on it though, so some behaviors may have been there, but they weren't entirely aware of it. Have any of your PANDAS kids been able to control their prominent OCD behaviors around others or do they perform another type of behavior? I keep thinking what am I doing that causes him to just ask me??? I was hoping some one had some insight here...

 

Also, have you guys ever noticed a change in behaviors over the course of time? Like I mentioned, he started with extreme anxiety and hand washing, but really does a lot of permission/performing three movement behaviors.

 

Today, he started something new. He had to hide under his brother's bed and couldn't explain why. When I finally pulled him out, he kicked and screamed. I told him we could compromise and he could get in his sleeping bag, which he proceeded to hide in for the next 30 minutes.

 

All of this is just so scary. Does any of it ring a bell with anyone else? I am so anxious to see Dr. Murphy and I pray that he'll get the treatment he needs. By the way, does anyone else feel like most people think you've lost your mind or have two heads when you tell them about PANDAS? No one around me seems to know anything about it.

[peglem]

My son is five. He started OCD/anxiety behaviors in late November 2009. We have seen a range of behaviors, beginning with extreme anxiety and crying jags lasting a couple hours, obsessive hand washing (even waking at 3:00 am to do it 3x's), pacing, now most recently asking permission to do certain behaviors or series of things. At first it was hand rubbing, picking fingers or toes, now it's three things at once (example: can I sit like this, pop bubbles in my mouth and position my hand like this). Sometimes he will ask me as many as 2-3 times per minute. Other times, he can manage to get distracted with other things and only ask once an hour or so. Our pediatrician felt like he had PANDAS, but isn't convinced because his titers were in the "normal" range (no numbers were provided). Initially, he put him on antibiotics, and we saw a tremendous improvement in symptoms (they were essentially gone while on abx.). Anyway, he wouldn't prescribe additional abx. because of the titer issue, but he is going to participate in Dr. Murphy's clinical trial (hopefully next week will be the first visit--we were delayed because he has croup right now). Here are some questions though:

 

Last weekend, my husband and I had to go out of town for a funeral. My in-laws (who are ABSOLUTELY AWESOME), kept the boys. My son had no symptoms while we were gone--other than mood swings and anger outburst a couple times. I had warned them that he may have to ask to do certain behaviors, but he abstained the whole time. We weren't in the house for 10 minutes before he started asking me all over again. I am the only one that he asks--not my husband, older son, or in-laws apparently. I don't know if he paced and they didn't really pick up on it though, so some behaviors may have been there, but they weren't entirely aware of it. Have any of your PANDAS kids been able to control their prominent OCD behaviors around others or do they perform another type of behavior? I keep thinking what am I doing that causes him to just ask me??? I was hoping some one had some insight here...

 

Also, have you guys ever noticed a change in behaviors over the course of time? Like I mentioned, he started with extreme anxiety and hand washing, but really does a lot of permission/performing three movement behaviors.

 

Today, he started something new. He had to hide under his brother's bed and couldn't explain why. When I finally pulled him out, he kicked and screamed. I told him we could compromise and he could get in his sleeping bag, which he proceeded to hide in for the next 30 minutes.

 

All of this is just so scary. Does any of it ring a bell with anyone else? I am so anxious to see Dr. Murphy and I pray that he'll get the treatment he needs. By the way, does anyone else feel like most people think you've lost your mind or have two heads when you tell them about PANDAS? No one around me seems to know anything about it.

Maybe its not just a question asking compulsion, but an asking mommy compulsion...you may be a part of that one.

 

And yes, most people act like I'm crazy when I talk about PANDAS...its so nice when you can talk to a doctor who knows and believes what you're talking about.

[ajcire]

I find that my pandas ds does behave different depending who is around... he has no trouble at school at all... and I suspect my dd has pandas as well but it's not confirmed... she definitely is having more problems with me than with my dh or anyone else. It's very frustrating.. when it is worse for me it appears to be just bad mommy parenting which makes me crazy.

[momaine]

This is exactly my 13 year old dd and it has been like this for qui3 years. I am the only one she asks all of her reassurance questions and I believe it is just becasue I am the one she is most comfortable with. She will occasionally ask my husband, but not very often and really only if I am not available. It is the most exhausting part of her ocd for me. I need to watch her eat to make sure she eats "righ.t" (as in not weirdly) I need to watcher her lie down in her bed to make sure she does it right. Watch her show me how her clothign or blankets touched her so I can reassure her it wasn't weird, etc. and she asks only me all the other reassurance questions. Sometimes My head feels like its going to explode from trying to pay attention to it all.

 

She finds relief being places without me where she is busy, like her grandparents or friends houses. But sometimes (less now that she is getting better) the amount of questions she asks when she gets back are compounded after supressing them for so long.

 

My daughter has been on antibiotcs for 2.5 months now and the amount of reassurance questions she asks is way down compared to waht it was. It is one of her worst symptoms.

 

Angela

 

 

 

My son is five. He started OCD/anxiety behaviors in late November 2009. We have seen a range of behaviors, beginning with extreme anxiety and crying jags lasting a couple hours, obsessive hand washing (even waking at 3:00 am to do it 3x's), pacing, now most recently asking permission to do certain behaviors or series of things. At first it was hand rubbing, picking fingers or toes, now it's three things at once (example: can I sit like this, pop bubbles in my mouth and position my hand like this). Sometimes he will ask me as many as 2-3 times per minute. Other times, he can manage to get distracted with other things and only ask once an hour or so. Our pediatrician felt like he had PANDAS, but isn't convinced because his titers were in the "normal" range (no numbers were provided). Initially, he put him on antibiotics, and we saw a tremendous improvement in symptoms (they were essentially gone while on abx.). Anyway, he wouldn't prescribe additional abx. because of the titer issue, but he is going to participate in Dr. Murphy's clinical trial (hopefully next week will be the first visit--we were delayed because he has croup right now). Here are some questions though:

 

Last weekend, my husband and I had to go out of town for a funeral. My in-laws (who are ABSOLUTELY AWESOME), kept the boys. My son had no symptoms while we were gone--other than mood swings and anger outburst a couple times. I had warned them that he may have to ask to do certain behaviors, but he abstained the whole time. We weren't in the house for 10 minutes before he started asking me all over again. I am the only one that he asks--not my husband, older son, or in-laws apparently. I don't know if he paced and they didn't really pick up on it though, so some behaviors may have been there, but they weren't entirely aware of it. Have any of your PANDAS kids been able to control their prominent OCD behaviors around others or do they perform another type of behavior? I keep thinking what am I doing that causes him to just ask me??? I was hoping some one had some insight here...

 

Also, have you guys ever noticed a change in behaviors over the course of time? Like I mentioned, he started with extreme anxiety and hand washing, but really does a lot of permission/performing three movement behaviors.

 

Today, he started something new. He had to hide under his brother's bed and couldn't explain why. When I finally pulled him out, he kicked and screamed. I told him we could compromise and he could get in his sleeping bag, which he proceeded to hide in for the next 30 minutes.

 

All of this is just so scary. Does any of it ring a bell with anyone else? I am so anxious to see Dr. Murphy and I pray that he'll get the treatment he needs. By the way, does anyone else feel like most people think you've lost your mind or have two heads when you tell them about PANDAS? No one around me seems to know anything about it.

[dut]

Hi - Our dd6 sounds very similar in episodes to your son. She did it way more with me and her compulsions were very similar too.. lots of telling and asking permission or reassurance. During her 1st episode she wasn't in school yet but did go to art and gym classes. I asked her what she did during those, did she ask the teachers. She was shocked that I would think she would do it there.. she was super aware that it wasn't "normal" and was just horrified at the thought of asking someone outside of the family or even letting them see it.

 

Like how some kids with TS can "save it up", it has to come out at some point like a bad itch or sneeze and when I would pick her up it would all come out, be it the ocd or behavioural stuff. She even didn't do the "worry trick" stuff (as she calls it) with my dh once episodes were ramping down, just during the bad parts but saved it for me.

 

As for the changes, we absolutely saw that too both between different episodes and even, within episodes it would morph.

 

As for telling people, certainly during an episode when we were all drained, I stopped bothering unless I thought I'd get at least a vaguely understanding attitude 'cos the "you're crazy/a bad parent/got munchausen's" just got to be too emotionally exhausting... now energy levels are a bit better I feel more inclined to go into battle to educate people :-)

[7upMom]

My 9 yr old is like this- he holds so much of it in at school and in public, even when he is at his dad's house every other weekend. I finally told him that if he needs to tic- do it, if he needs to spin 3 times and touch something( like at home) do it. We were seeing rages in him constantly ( every other day or so)- he was so relieved when we told him don't worry about what anyone else thinks and as long as it is safe we would not interfere. He has not had one rage since ( temper flareups/irritab yes,but he is much more at ease) and he now will tic and have compulsive movements in school But he doesn't come home irritable/ and full of anger. It is like holding it in was making him rage all the worse. His dad also talked to him and said not to be embarrased by it with him ( my son admitted he was emb that his dad would get upset)

I also have felt "crazy" trying to explain it to others, thats one reason this forum is so great - everyone just gets it and there are just so many different things with it that the person on the other end of the conversation gets lost pretty fast too.

[LaraM]

My 9 yr old is like this- he holds so much of it in at school and in public, even when he is at his dad's house every other weekend. I finally told him that if he needs to tic- do it, if he needs to spin 3 times and touch something( like at home) do it. We were seeing rages in him constantly ( every other day or so)- he was so relieved when we told him don't worry about what anyone else thinks and as long as it is safe we would not interfere. He has not had one rage since ( temper flareups/irritab yes,but he is much more at ease) and he now will tic and have compulsive movements in school But he doesn't come home irritable/ and full of anger. It is like holding it in was making him rage all the worse. His dad also talked to him and said not to be embarrased by it with him ( my son admitted he was emb that his dad would get upset)

I also have felt "crazy" trying to explain it to others, thats one reason this forum is so great - everyone just gets it and there are just so many different things with it that the person on the other end of the conversation gets lost pretty fast too.