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I don't know what to think. I got a call back from a member of one of the PANDAS specialist teams. I told him a brief history of ds and he doesn't seem to think it is PANDAS since there was not a sudden onset. He didn't just wake up one day abnormal.

 

Said it may not have anything to do with his symptoms. While he doesn't really have your textbook tics he does have some vocal tics sometimes where he will repeat a sound over and over until we stop him. Which most of the time we are able to do.

He has some what I believe to be OCD behaviors - can't have hair (any kind) near his mouth, can't sit at the table unless it is cleared, has to have a certain door shut before being able to play games, can not use the bathroom by himself if there is a fire alarm near.

 

He has been somewhat hyper since he was able to walk.I remember it getting worse around age 4. At the time I just thought he was reacting to his new sister that had just been born.

He was hard to potty train but otherwise seemed developmentally normal. In preschool he began to show some signs of disobedience and inattention. By the time he got to Kindergarten he was having full out meltdowns on a bi-weekly basis. I was working at the time and mostly had to deal with this over the phone.

 

When he entered first grade in a public school system we had a traumatic reaction - meltdowns, tantrums, violence, unable to focus for more than a few minutes at a time. We went to the doctors at that time and he was said to have ADHD and we put him on some medications. That was a disaster! He had horrible reactions to all the stimulants and some were downright scary. He was worse so we took him off all meds.

 

He was ultimately put on "home schooling" until we could agree with the school system on how to handle him in the educational setting. He now attends a special education program that has helped him tremendously. Fast forward to today - I changed pediatricians to get some answers after the school testing came up that he was PDD - or possible on the spectrum. His teacher is also concerned that he may start to get behind due to his focusing issues. He has difficulty accepting "no" or change and he has meltdowns or serious reactions at least on a weekly basis at home.

 

So this doctor ordered blood testing and came up with the strep levels. He was put on aug. for a few weeks - we did see him looking better physically and just in general in a better mood but no major difference in his behavior. After the abx we were retested and his antistrep was 400 and his antdnase sp? was 960.

So she reccomended that we seek a neurologist. That landed me with Dr.L in Maryland who is just now taking new patients again. I am torn between going to a phsychiatrist to have him neurophsych eval done again or should I go straight to Dr. L?

 

Has anyone else had symptoms that presented like this? Does this sound to you like a possible PANDAS case? Any thoughts would be appreciated!

 

CB

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Hello - my ds3 sounds somewhat like your son. My dd7 is very calssic PANDAS presentation but my son is more the hyper/not listening/some OCD type.

 

I can't say what you're dealing with but I would always try to rule in or out PANDAS first than go the psychiatrist route. Dr latimer is very well respected and I'm sure will help you decide what you're dealing with. You can always go the psych route after if necessary... I'm not so sure it's as easy the other way round where you may get rxd psych drugs that if it is PANDAS could muddy the waters or even make matters worse...

 

 

good luck...

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Sounds like my son a lot. He did not respond to stimulant ADHD medicine. He did have a positive response to gluten, casein, corn and soy free diet. My son was diagnosed with PANDAS (high strep titers) without the classic sudden on set - I think it was just early onset and it was not caught then - many infections including strep at an early age. But he also tested positive recently for Lyme. I would recommend looking into both Lyme and PANDAS and other infections/immune system issue before going the psych route.

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Its hard to judge sudden onset at an early age...and this disorder can mess up development. When a very young child is ill, sudden behavior changes are attributable to the fact that they don't feel well.

I would go to Dr.L before psychiatry because 1)You really haven't had much success there and they'll likely just make "best guess" and try different things. and 2)If it is post infectious or infectious in nature, then not only will it be difficult to tell if the psych meds are working (because things will still vary w/ infection or exposure) but it will also be more difficult to tell if treatment for immune problems are working.

 

Dr.L is very good at what she does- she knows medications that affect neurology as well.

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It 'sounds' like PANDAS to me (but I am by no means an expert.)

I think if your insurance gave you a referral to Dr. L, I'd go!

Otherwise, the PANDAS will always be in the back of your mind, left wondering, right?

It's hard, I know, hang in there---

Edited by S & S
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The best advice I ever got was to cancel the neuropsych eval we had scheduled (and paid a $2000 deposit on) until after we treated Pandas. It felt we'd be evaluating the disease, or the effects of the disease, not the real boy. We decided that if there were residual things after treating Pandas, then we could do the eval. So we canceled the eval, got our money back and never regretted it.

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