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How to deal with this?


mar
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So ds is now 10. He has this thing with repeating things that he likes to talk about or making sounds that his friends make also. So I tell him the other day in the car to stop making some sounds bc it is annoying dd. we have kind of talked about this the last couple of days and I ask why do you have to do it several times after I ask to cut it out. So he throws this at me " mom I was watching pawn stars ( or something similar) and there was an adult who had to keep saying or doing an action over again and he has some syndrome he says can't remember what it's called he's says I think I have that!! He seems all excited . And he throws in mom don't worry it's nothing crazy. But I think I have this , it's like me. When you tell me to stop making a noise or whatever I feel like I have to do it a couple more times. He is all fine and thinks nothing of it. Just want to mention that ds knows children on our block and from school that have aspergers, autism, add, adhd. So the next day he is doing homework and he is boucing and needs needs to be told several times to focus. And he looks at me and saids I like to move around and maybe mom you never know I could have add. So I now he is getting older and the think is what do I say!! Yes I think he is somewhat add. Manages thru school with no real issues. So I ask him how do you manage In school for that long without getting up and moving. He said I love rececess bc I try to burn my energy there and I ask for washroom breaks just to get up and move around. So dd says how a kid in her class was rocking back on her chair and cracked to the ground. Ds says he has done that and been there . I am like what??? He tells md of several kids doing this in his class and that he has done if several times. He says it's funny! So I guess my question is that he is seeing things and pointing out things that I have known abown do j say yes you have this?? But you have to remember that ds freaks out about things do I say you do have add and this syndrome will be be okay or dwell on it and live his life thinking he has something wrong with him. he is older and smarter. What is a good wAy of talking to him about this?

Mar

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Antoion Palazzalo, from Barter Kings, has Tourette's, could that be what your son is talking about? My son says that's just who he is when he is repeating and bouncing and OCDing about things. I guess I am in denial, because I keep trying to change him into what is socially correct.

 

No real answers, just lots of support. Keep trying!

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My DD10 has palalalia (echos herself) and echolalia (echos others). She describes that she gets the tingly feeling she also has before having to perform her motor tic du jour. I used to think that these repetitions were OCD based because so many others on this forum are dealing with PANS related OCD symptoms, but DD10 has never really had any OCD behaviours. I think that the urge to repeat speech is a vocal tic for her. Because hers has completely disappeared with proper antibiotic treatment, she knows that these urges are the result of infection and her body's reaction to it. Others may want to give it a name, or call it a disease - we call it an infection. She seems less scared by this because she sees others getting sick, and then recovering. She does realize that she is in it for the long haul, but that there is light at the end of the tunnel, and that the doctor and I are working our hardest to help her. She has also noticed her ADHD and poor executive function improve with Abx treatment so we feel there is hope in these areas as well.

 

DD10's tics are very suggestable - if I ask how her tics were today, because I chart her symptoms every day, she will have to do a BIG tic before answering. She and I both expect this reaction now and always have a giggle over it.

Edited by rowingmom
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It sounds like your son is realizing he is different from others in some ways and is groping for a name for what "it" is. We all do this. Develop a series of symptoms and we all jump on the internet searching for a diagnosis, because that leads to a treatment path; a road to potential relief or at least a way to cope. Our kids are no different.

 

There's no right or wrong answer about how much to tell your son. Since his first major flair, my son (now 10 but 6 at the time) has known about Pandas and then lyme. He knows the name of each pill and why he takes it. For him, information takes away fear because he feels less confused about what's happening. It's also been necessary because he's undergone some serious procedures like Pex and IVIG. So you kind of need to explain at least a little bit about why you need to spend 4 days in the ICU hooked up to a dialysis machine.

 

My daughter, 7, doesn't want to know as much. Too much info confuses her. She needs things summed up quickly, neatly and just wants to know that she'll be ok.

 

The way I've decided what to tell them is to bring the subject up and let them ask questions. If one answer leads to more questions, I tell them more. If an answer seems to satisfy them and they're ready to move on to another topic, I drop it. My son has probed and questioned for hours. My daughter is content with far less discussion.

 

It sounds like your son wants more information and it could be a relief to him to know that what he has is treatable. It may help him to know there are others who have what he has and they lead happy, productive lives, that they recover. When my son was in the ICU for Pex, it made a lasting impression on him to meet another Pandas kid there. The next year, he came to the IOCDF conference with me and met a few other Pandas kids. He can now spot kids in his classroom who have anxiety, tics or adhd. It makes him feel better to know he's not "the only one" and to know nearly every one of his friends struggles with "something" (one has anxiety, one needs hearing aids, one has GI issues requiring periodic endoscopes...). There's no right or wrong answer but it sounds like it might help your son to know that his condition has a name and that there are other kids just like him. JMHO.

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I have also talked to my son about this as a side effect of strep throat or other infections. He knows we are doing everything we can to make it go away. He has been in " remission" several times and knows it can go away, it has just been a lot harder to get rid of this time. We also talk about what his symptoms are every day, and I make notes. I tell him to call me from school if he notices anything different or strange happening. I think it is best to talk honestly with kids and it sounds like your child is old enough to understand the basics. Don't give up and just assume that this will be a lifelong illness. We are all fighting this and because of so many of the moms here who are brave enough to try all of these controversial treatments we will figure it all out.

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It sounds like your son wants more information and it could be a relief to him to know that what he has is treatable. It may help him to know there are others who have what he has and they lead happy, productive lives, that they recover. When my son was in the ICU for Pex, it made a lasting impression on him to meet another Pandas kid there. The next year, he came to the IOCDF conference with me and met a few other Pandas kids. He can now spot kids in his classroom who have anxiety, tics or adhd. It makes him feel better to know he's not "the only one" and to know nearly every one of his friends struggles with "something" (one has anxiety, one needs hearing aids, one has GI issues requiring periodic endoscopes...). There's no right or wrong answer but it sounds like it might help your son to know that his condition has a name and that there are other kids just like him. JMHO.

 

I agree.

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