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Do your kids with PANDAS have a raspy voice always?


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I come up with about 20 questions a day about PANDAS. I try to spread them out a little so you won't all think I have gone crazy... :)

 

I was curious if other parents have noticed that their kids with PANDAS have a very raspy voice? My son has a raspy voice all the time. He has had it for so many years that I don't know when it started. I am guessing it was when he was in the first grade and he had his first strep infection. It is as if his throat has never been the same because he has had so many cases of strep throat and sore throats. Possibly scarring, do you think? I have this on my list of questions for Dr. K.

 

Thanks, Judy...

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Hi Judy:

 

Do you have an upcoming consult with Dr. K? We had ours 3 months ago and I am therefore hesitant to ask him any more questions. But, one question I would ask him is: In his 10 years of experience with treating PANDAS, what percentage of kids who have passed the one year mark and gone off antibiotics have a recurrence? Has anyone ever asked this question to him?

 

Elizabeth

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With strep...no sore throats, no fevers, no redness. None of my 3 kids do.

 

 

My son does not have a raspy voice all the time, but when he becomes what I now refer to in my head as the "excorsist" and has one of his raging episodes his voice changes into a raspy voice. That is one of the ways I am able to tell the difference between a PANDAS tantrum and a regular 5 year old tantrum.

 

Kari

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Did you notice it being raspy back when he first had PANDAS (but you didn't know it yet), An Occupational Therapist pointed it out to me when my son was 6 years old. That was right after his first strep infection.

 

We got my son's CAM K number last night, I am planning to do a post on it. He was at 165. They said that was above the median for the PANDAS group. It explains why he has been having such a tough time. He has been up and down, overall he is doing much better on the high dose augmentin.

 

Rough day though, he just had to have 3 teeth pulled about 2 hours ago. Baby teeth that would not budge and the new teeth came in many months ago. I figured if we have to do it, better to do it now while on the high dose.

 

How is your son doing on the augmentin?

 

Thanks, Judy...

 

 

Wow - yeah, our son has had a very raspy voice for quite a while now, since the major PANDAS exacerbation hit. Never connected them. He's 13, and we just figured his voice might be changing... but now I'm not so sure.
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I am SO afraid... okay, terrified... to jinx things. <_< But we've been seeing progress in the last month (since starting the mega-dose augmentin) that amazes us!

 

Our son - who could not touch anything without wearing vinyl gloves and went through 3 cans of Lysol a day not long ago - is wrestling with his brothers bare-handed all the time now! So many small victories: sitting in chairs, using the remote and the phone (without gloves!), discontinuing his "nighttime cleansing ritual," preparing some of his own meals (!), eating snacks in the family room (was only able to eat in my home office since 3/29/09), going outside.... A hundred little things, but to us they're HUGE (and I KNOW people on this forum can relate)!!! (He'll high-five or fist-bump Mom & Dad without hesitation now. A few days ago, he let us each hug him and didn't flinch. Had to fight really hard to keep my eyes from misting....)

 

I know there are some mixed feelings about Beth Maloney's foundation, etc., here... but I have to say, for our family, God bless her and her efforts! We used her book to convince the local DAN doc and Dr. K to try the high-dose abx, and it's made a world of difference so far. Seems to be the "missing piece" to the puzzle for our son.

 

We're not out of the woods yet. I know that. We've had crushing setbacks in the past. But this is the most optimistic my wife and I (and our PANDAS son) have felt in a long, long time!

 

 

Did you notice it being raspy back when he first had PANDAS (but you didn't know it yet), An Occupational Therapist pointed it out to me when my son was 6 years old. That was right after his first strep infection.

 

We got my son's CAM K number last night, I am planning to do a post on it. He was at 165. They said that was above the median for the PANDAS group. It explains why he has been having such a tough time. He has been up and down, overall he is doing much better on the high dose augmentin.

 

Rough day though, he just had to have 3 teeth pulled about 2 hours ago. Baby teeth that would not budge and the new teeth came in many months ago. I figured if we have to do it, better to do it now while on the high dose.

 

How is your son doing on the augmentin?

 

Thanks, Judy...

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