How many of you have children on or close to the autistic spectrum?

[KeithandElizabeth]

I read his book, Healing the Childhood Epidemics, and was very impressed with what he had to say... I do remember the vitamin A deficiency and eye contact. He also explained how allergies, asthma, autism and aspergers (and he does have an old section on PANDAS) are all related. He looks at the whole body in terms of treating each child. He was my step-mother's doctor during her years of dealing with chronic fatigue. However, he is so popular now with all of his work that he is a fortune to see. My step-mother did email him about how he was treating PANDAS now and he mentioned antibiotics and IVIG.

 

Elizabeth

[ajcire]

That is definitely interesting... I don't think he would fall into that category though. It's not a total shutdown or anything and I wouldn't say he becomes mute about it. Anxious and uncomfortable, definitely.

 

 

 

He doesn't always make eye contact, you can see he gets very uncomfortable when put on the spot to talk to someone, if a friend says hello to him he gets uncomfortable if it's in a setting where he is now on the spot to respond... if he's out playing with the kids, he's fine. Often people mistake him for being rude when he is just genuinely uncomfortable. I has asked a psychologist about this (prior to knowing about Pandas) and she told me that he was just fine... and that often really bright kids were quirky but that really everyone has their quirks. I can't figure it out really because sometimes he has no problems looking at people and talking and other times he looks like he wants to just jump out of his skin from it.

 

have you heard of selective mutism? it's on the anxiety spectrum but as we all know, could be another presentation of pandas. we had a friend with a child with it. for years, i was concerned he had autistic tendencies. i'd notice at playdates at his house, he seemed fine, but seemed very different at other times and places. she didn't notice for a while b/c he was very bright and at home, totally comfortable.

it basically came down to that if he felt something was expected of him - i think mostly with communication - he would completely shut down.

previous to knowing about this, my friend and others(eg teacher) thought he was just the most stubborn kid they'd come across. now they treat it as an anxiety issue and more try to help him than all that goes along with thinking he's being a stubborn pain in the a**.

[Megs_Mom]

Our daughter also "lost eye contact" with adults in particular. We did not recognize this as a PANDAS symptom until that ability came back very quickly with anti-biotics. Other adults would comment that Meg seems so happy again, and it was mostly due the fact that she would talk to adults again - still twirly or fidgity, but I am not feeling like I need to explain the "head down, body pressed into my side" presentation anymore. For a while, I really just thought this was a developmental age approp shyness, but now I see it as clearly PANDAS. She will even initiate a conversation now with an adult (there was never this issue around kids). I can also set some rules for her - like in therapist's office - that she cannot climb on the furniture or stand on her head while speaking . She will now sit still and talk for short periods, but is still most comfortable talking to adults while in movement. On the positive side, she is becoming a pretty good little gymnast!

[faith]

....wow....what megsmom says rings a bell for me in my sons earlier years. maybe just another symptom I did not really know was part of all this. I will say exactly the same, my son is not autistic or asbergers, but I always noted that he seemed to be a little "reserved" with adults, but not children. An adult would say hi to him, and he'd look uncomfortable and avert his eyes and give an unaudible "hi" back, and 30 seconds later see a freind and call out to him and wave. so very sociable to kids, but almost intimidated by adults. It would freak my mom out when in his younger years he would not be open to kisses and hugs to family members, it took alot of coaxing and coaching on my part to finally get him to hug grandma when he sees her (now he does it no problem), and to other family members he will let them approach him and then he'll give a little hug. Even recently, when he was at his friend's house, the mom (who is a friend of mine as well) mentioned to me that she said hello to him when he came in and just kind of ignored her so she made a point to tell him "when you come in someone's house you should say hello to the mom if she's standing there"... ...I try not to feel defensive for I know these are his quirks, but I realize that others have sort of tuned in to his ways, I've heard stuff like this in the past. I always just felt like, wow, I must suck at teaching manners, why doesn't my son get it? It would internally aggravate me when someone pointed something like that out, but I would just try to go about and teach my son and have a face on like, well, this... .......So wow, this is part of it too? ...

 

Faith

[thereishope]

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Edited October 18, 2016 by vickie

[smartyjones]

are we all just in a "the more we look, the more we find" cycle? my older son, who is totally well-functioning has me thinking, he may show some pandas symptoms. he is 7 but sometimes acts like a 13-yo premenstrual girl. my kids go to a montessori school and the theory is of "planes of development" - one entered around the age of 6 that explains much of his quick moods - and the timing is correct. however, i am also trying to track where this corresponds to when i believe my younger pandas son was infected/showed mild symptoms.

both my kids, especially the older, i always say "are not at all adult oriented". i've always thought it to be the way shyness presents for them. now i wonder if it's anxiety and pandas related.

oh - my head spins!

[ajcire]

I don't know though... despite my ds's eye contact issues and clearly wanting to jump out of his own skin at times we always said he was much more adult oriented than kid oriented. We attributed it to him being quirky bright and just not liking the kind of play other kids his age did..... now he most definitely chooses to go off and run with his friends but at school.. if given the choice of playing with the kids at indoor recess or being with the teacher..he would choose the teacher. Last year his teacher said when she saw him kinda of lost in the group she would call him over and give him a job to do for her which always made him feel more comfortable. Yet he has friends and doesn't strike anyone but his nervous mother as off.

 

are we all just in a "the more we look, the more we find" cycle? my older son, who is totally well-functioning has me thinking, he may show some pandas symptoms. he is 7 but sometimes acts like a 13-yo premenstrual girl. my kids go to a montessori school and the theory is of "planes of development" - one entered around the age of 6 that explains much of his quick moods - and the timing is correct. however, i am also trying to track where this corresponds to when i believe my younger pandas son was infected/showed mild symptoms.

both my kids, especially the older, i always say "are not at all adult oriented". i've always thought it to be the way shyness presents for them. now i wonder if it's anxiety and pandas related.

oh - my head spins!

[Megs_Mom]

Faith - yes exactly! When Meg did hug someone, like Grandma, under pretty serious direction/social pressure, she would turn at the last second, and hug backwards - so they were hugging her, but she was positioned to bolt. She now hugs with her entire body, full force, forwards, nearly knocking people over. Many adults have given surprised "wow, Meg, that's the best Meg hug I have ever gotten!" She was always on the move, so never a kid that would just sit and cuddle, but during PANDAS, it was almost insulting to adults, how she would pull away.

 

We also noticed an almost claustrophobic reaction to many situation, but especially ones where she was being held by a person. I am still not entirely sure if this was a "germ issue" or something sensory - or what. It stll remains a little.

 

My best friend's child has Aspergers, and while our children are very different, they have some issues that are nearly identical, when Meg is in a PANDAS episode.

[Megs_Mom]

I had to reteach my son basic manners. If someone says how are you, say fine. He would tell me that he really doesn't know how he feels. I had to tell him it's just easier to say fine than"I don't know" or not saying anything. I also had to start reminding him that when someone says hi, to respond with a hi. This whole interaction thing is now cited in his IEP, when it wasn't an issue pre-PANDAS. I don't fight it. I figured it makes them keep a closer eye on him. It's actually one of his goals now on his IEP. Josh will respond with an appropriate reaction 4/5 trials.

Megan had scrupulosity OCD, and literally could not lie. About anything, including how she felt - for fear of some overwhelming consequence which was often hard to get her to verbalize. So unless she was 100% sure of her answer, there were so many questions that she could not answer. It was very frustrating for a while, as she went from a bossy independent little alpha girl - to one that said "I don't know" or "maybe" all the time to everything from "how are you" to what do you want to do, to what do you want to eat.