Do your kids with PANDAS have a raspy voice always?

[KeithandElizabeth]

Worried Dad:

 

Oh my gosh, I am sitting here crying reading about the fact that you can hug your son!!!!! I am sooooo happy for your family!!

 

I have been meaning to go to one of our top psychiatrists in town who, I believe, is treating several kids with PANDAS with psch meds and these meds are only mildly helping. I keep thinking about one of the moms who said her son no longer hugs her because of contamination fears. I want this psychiatrist to know about PANDAS and you have just reminded me how important this goal is.....

 

Elizabeth

[momtocole1]

:) That is the best news. Don't worry you are not jinxing it. You are giving us all hope. The more you talk about how well he is doing the more you will start to believe it and expect it. This is just an amazing story. I am so, so happy for you, your son, your wife, your whole family.

 

Those changes in behavior are incredible! Only a PANDAS parent can truly appreciate all of those things that your son can now do. What I have found the most amazing is that when my son sheds an OCD behavior he does not seem to even acknowledge it. He will have done something day after day for many months, he has become literally obsessed with it, right... Then it just goes and it is like he never realized that it was there. It is not happening with all the OCD behaviors just some of them. It is the most mind boggling thing to watch. So I'm standing there, staring at him in disbelief and he's looking at me like "Hey Mom, What, why are you staring at me?" It is like his mind flipped the pages back to where he never did that OCD behavior.

 

One thing that happened last night that really shocked me is that whenever I put him to bed, (he is almost 12 and I have to put him to bed. Lay down and talk to him for awhile or play a game on my iphone with him to help him settle in), anyway for many, many months when I leave his room he says Goodnight, sweet dreams, I love You, Be safe. I have to say it back to him, verbatim or he would spiral out of control. Last night and tonight, he just said goodnight and I said goodnight. It is surreal.

 

His progress is still in that saw tooth pattern. Ups and downs. He is still struggling in school quite a bit and would rather not go. I just keep wondering if I should try to homeschool him but he is so lonely and it is such an isolating thing for him.

 

Thanks again for the positive note, I so needed it!

 

Judy...

 

 

 

 

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...

[thereishope]

Great news, worried dad! Your experience is proof that all treatments, ways if going about a diagnosis, etc need to be represented and brought to light. Imagine if someone silenced Beth. You would not have had that Augmentin info. I agree she is helping some kids and for that I am thankful.

 

The world must have stopped around you when you got that hug. I am so happy.

 

momtocole, My son had rigid bedtime routines, rituals, etc as well. I too had to do very specific thing and say very specific things. Once I realized he was nudging a little out of it, I ran with it. Every two or three nights, I'd change up what I said or did to make sure we weren't falling into another ritual. Even to date, he is doing well, and I still find myself testing him sometimes

[ajcire]

Worried Dad, that is absolutely fantasticly wonderful! I don't think there is any doubt that Beth Maloney has and will help so many children.... even those who are not loving everything about how the foundation is being done or some of her information I am sure would agree that she has done an incredible thing with her book for so many families.

[Ellen]

Worried Dad, this is amazing news. I know that you have tried so many different treatments for you son, and it is great that after searching for so long, you seem to have struck gold with Augmentin. Continue to keep us posted on his recovery. Your story is inspiring!

 

Ellen

 

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...

[Worried_Dad]

Thanks, everybody, for the kind posts. I have SO dreamed of posting good news, after all the times others on this forum gave us hope when things seemed totally hopeless!

 

I love this forum. It saved my sanity... and I think it saved our son's life, or at least his quality of life. It pointed us to Dr. K and Dr. Latimer and Dr. Cunningham and Saving Sammy and to so many other invaluable resources. It explained things that made no sense, and it reassured us that we weren't alone.

 

Thank you!!!

[michele]

Worried Dad

How did you get the Dr's to prescribe the large dose of antibiotics? Was it DR. K or the DAN! who wrote the script? Was it because the Sammy story that they did that high dose? Is yours the 2000 mg a day? I am so happy for your progress. Your son has had the extreme OCD like Sammmy's hasn't he? How are his tics? Keeping our fingers crossed for you guys.

 

My son always has had a raspy voice. Dr. Murphy noticed it in Florida and suggested speech? He has never qualified for speech.

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...

[P_Mom]

My younger son gets a raspy voice when in an episode. I have always wondered if it is connected. I remember in speaking with Janice Zuilli (daughter in original Swedo study) that she said that the researchers/docs they saw believed PANDAS was also attacking her daughter's thyroid as well as her brain. She said the thyroid forms in the brain, and then drops down....therefore retaining some of the same cells as the brain. (I did my best to reiterate what she said. ) Anyway, they had to give her daughter thyroid meds and they helped her...even helped with her overwhelming anxiety. I wonder if this is happening with some of our PANDAS kids.......could attack of the thyroid (causing inflammation) cause a raspy voice??? When my older son is in a flair he eats like there is no tomorrow....correlation? Check out the stuff on the thyroid....perhaps another missing puzzle piece.

[michele]

OMG I forgot about that. A mom of two Aspergers girls who were having tantrums had their thyroids checked and they were both malfunctioning. Her Dr. treats PANDAS and spectrum issues. She doesn' take insurance and is cash only. Dr. Nevada Reed at Kidslink Twinsburg OH. She is a neurologist. If I ever get him a medical card, or off this ppo( they pay 0 out of network), I want to see her for Andrew. She is supposed to be the best. Some of her patients were in the Sweedo study. She is expensive and we are low on extra money after all these Dr's and meds. http://www.kidslinkohio.com/ http://www.kidslinkohio.com/family/reed.shtml

My younger son gets a raspy voice when in an episode. I have always wondered if it is connected. I remember in speaking with Janice Zuilli (daughter in original Swedo study) that she said that the researchers/docs they saw believed PANDAS was also attacking her daughter's thyroid as well as her brain. She said the thyroid forms in the brain, and then drops down....therefore retaining some of the same cells as the brain. (I did my best to reiterate what she said. ) Anyway, they had to give her daughter thyroid meds and they helped her...even helped with her overwhelming anxiety. I wonder if this is happening with some of our PANDAS kids.......could attack of the thyroid (causing inflammation) cause a raspy voice??? When my older son is in a flair he eats like there is no tomorrow....correlation? Check out the stuff on the thyroid....perhaps another missing puzzle piece.

[Worried_Dad]

Yeah, it was because of Saving Sammy... and because we begged. Dr. K actually prescribed it 1st (2 week experimental period), and our new DAN doc agreed to prescribe for us locally after we saw big improvement.

 

Basically, we did those 2 rounds of IVIG with Dr. K (rounds 2 and 3) this summer. Dr. K expected us to see major improvement after 4-6 weeks. Three months after round 3 (4 months after round 2), we were still seeing only very slow, subtle progress... and we were getting desperate. Dr. K was a bit skeptical about the Saving Sammy story, but he agreed that the mega-dose augmentin was worth a try since we weren't seeing the progress he'd predicted.

 

So he called in a script for 2 weeks of 875 mg twice daily (less than Sammy Maloney dose). When it appeared to make such a difference, he called in a 1 month script for 1000 mg twice daily (full Sammy dose). I notice from other posts that he's trying the higher dose with some of his other patients now, too. (God love Dr. K. He's willing to try new things if he doesn't see the results he wants.)

 

And yeah... our son's symptoms were very similar to Sammy's in severity and duration. Just praying our son's story ends the way Sammy's did. Seeing Sam Maloney interviewed on the Today Show - a happy, healthy college freshman - was a huge inspiration!

 

 

Worried Dad

How did you get the Dr's to prescribe the large dose of antibiotics? Was it DR. K or the DAN! who wrote the script? Was it because the Sammy story that they did that high dose? Is yours the 2000 mg a day? I am so happy for your progress. Your son has had the extreme OCD like Sammmy's hasn't he? How are his tics? Keeping our fingers crossed for you guys.

 

My son always has had a raspy voice. Dr. Murphy noticed it in Florida and suggested speech? He has never qualified for speech.