momtocole1 Posted October 27, 2009 Report Share Posted October 27, 2009 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... Link to comment Share on other sites More sharing options...
Suzan Posted October 27, 2009 Report Share Posted October 27, 2009 Interesting.... my 7 yr old has a raspy voice... hummm... Link to comment Share on other sites More sharing options...
ajcire Posted October 27, 2009 Report Share Posted October 27, 2009 My ds doesn't. If anything his is more high but I think it's because he often changes his voice a bit when he talks (I am always telling him to talk in his regular voice).... Currently he is in major throat clearing mode Link to comment Share on other sites More sharing options...
EAMom Posted October 27, 2009 Report Share Posted October 27, 2009 Interesting. Our dd does not. But, we have another child in the neighborhood who always has a raspy voice... Link to comment Share on other sites More sharing options...
thereishope Posted October 27, 2009 Report Share Posted October 27, 2009 Mine does not always have a raspy voice, but sometimes it does sound strained. When he once had a very high pitch it turned out he had croup. That was his only symptom. No cough when he had croup. Does your son sleep with his mouth open? Link to comment Share on other sites More sharing options...
ajcire Posted October 27, 2009 Report Share Posted October 27, 2009 Do most of your kids actually get sore throats with their strep? Link to comment Share on other sites More sharing options...
faith Posted October 27, 2009 Report Share Posted October 27, 2009 No raspy here. keep the crazy questions, Judy, then people won't think I"M the crazy one, lol. Faith Link to comment Share on other sites More sharing options...
PKM Posted October 27, 2009 Report Share Posted October 27, 2009 My son never had sore throats with strep infections - he doesn't doesn't have a raspy voice either. Do most of your kids actually get sore throats with their strep? Link to comment Share on other sites More sharing options...
KeithandElizabeth Posted October 27, 2009 Report Share Posted October 27, 2009 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 Link to comment Share on other sites More sharing options...
thereishope Posted October 27, 2009 Report Share Posted October 27, 2009 With strep...no sore throats, no fevers, no redness. None of my 3 kids do. Link to comment Share on other sites More sharing options...
zazuk2010 Posted October 27, 2009 Report Share Posted October 27, 2009 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 Link to comment Share on other sites More sharing options...
colleenrn Posted October 28, 2009 Report Share Posted October 28, 2009 No raspy voices here. No sore throat/red throat/ any physical symptoms with strep except years ago when this all began witht my daughter. The 1st few strep she had a fever and sore throat. Colleen Link to comment Share on other sites More sharing options...
Worried_Dad Posted October 28, 2009 Report Share Posted October 28, 2009 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. Link to comment Share on other sites More sharing options...
momtocole1 Posted October 28, 2009 Author Report Share Posted October 28, 2009 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. Link to comment Share on other sites More sharing options...
Worried_Dad Posted October 28, 2009 Report Share Posted October 28, 2009 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... Link to comment Share on other sites More sharing options...
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