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Cured of PANDAS


mrigsby

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Thanks for this info. I needed it. I am going to share with my son and look at it often!

 

There are plenty and Diana Pohlman hopes to put out an e-mail soon sighting more success to provide hope. Most recently, Diana visited with Dr. Latimer and while there a beautiful 17 year old girl stopped by her office to THANK her for treating her 10 years ago. She was off to college and fine. Her comment to Diana was 'you tell all those PANDAs kids not to worry they will be fine'!!!!

 

-Wendy

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Sadly, this is an autoimmune disorder

 

No one gets rid of it. Period.

 

One can only try to keep symptoms in check for a period of time, then it rears its ugly head again.

 

I've been in denial about this, I'm afraid.

 

Even those kids who are well now.... for how long? I've heard stories of kids who were well and then flu season, etc, hits and Wham.

 

It's an ongoing struggle. Sammy knows when he has to take his pills. It never really goes away. We just got to find out what keeps symptoms in check.

 

sorry to be a wet blanket.

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how are things going now, michael? has your boy responded to steroids or anything new? any improvements at all?

 

 

Faith

 

Hi, Faith, he still struggles. We reduced a dosage of a sedative/tic reduction drug which seems to have improved his mood, if not changed his behavior much.

I blogged about the steroid boost attempt a while back.

http://www.latitudes.org/forums/index.php?showtopic=6828

 

His tonsils come out this Friday. Then it's IVIG time in early March, assuming the insurance co picks up the tab, which it is supposed to do.

Just gotta figure out how much product needs to go in him for iVIG for best success. See earlier blog by nevergiveup on the topic.

 

Michael

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Geez, that is not what I have heard at all. Similar to RF, there are many that go on to have incidence free lives and some that don't. Granted there are a lot of variables and some children may have other issues in addition to PANDAS. Some even have secondary auto-immune diseases. I think you have to keep the faith and project 100% or its never achieved. Our son is definitely better than 100% in some areas...... we are still working towards 100% in others.

 

I will add that I've been reading a great book by a nutritionist that cured herself of an auto-immune disease that she suffered for over 10 years. She talks extensively about healing the gut and the toxins disease throws off within the body. And, after having done extensive reading on the exotoxin in strep I prescribe to her theories whole heartedly. We've got our son currently on high dose probiotics (healing the leaky gut), bentonite clay (detox for toxins) and high dose b-12 (nerve damage). I can't say what will happen in 10 years but my montra is 100% or better and to never a return to PANDAS.

 

http://www.thisworkscrutchesdont.com/

 

I am anxiously awaiting for Dr. K to publish his case history supporting full recovery in many more to give parents the confidence that with aggressive proper treatment this can be fully reversed.

 

-Wendy

 

 

Sadly, this is an autoimmune disorder

 

No one gets rid of it. Period.

 

One can only try to keep symptoms in check for a period of time, then it rears its ugly head again.

 

I've been in denial about this, I'm afraid.

 

Even those kids who are well now.... for how long? I've heard stories of kids who were well and then flu season, etc, hits and Wham.

 

It's an ongoing struggle. Sammy knows when he has to take his pills. It never really goes away. We just got to find out what keeps symptoms in check.

 

sorry to be a wet blanket.

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Geez, that is not what I have heard at all. Similar to RF, there are many that go on to have incidence free lives and some that don't. Granted there are a lot of variables and some children may have other issues in addition to PANDAS. Some even have secondary auto-immune diseases. I think you have to keep the faith and project 100% or its never achieved. Our son is definitely better than 100% in some areas...... we are still working towards 100% in others.

 

I will add that I've been reading a great book by a nutritionist that cured herself of an auto-immune disease that she suffered for over 10 years. She talks extensively about healing the gut and the toxins disease throws off within the body. And, after having done extensive reading on the exotoxin in strep I prescribe to her theories whole heartedly. We've got our son currently on high dose probiotics (healing the leaky gut), bentonite clay (detox for toxins) and high dose b-12 (nerve damage). I can't say what will happen in 10 years but my montra is 100% or better and to never a return to PANDAS.

 

http://www.thisworkscrutchesdont.com/

 

I am anxiously awaiting for Dr. K to publish his case history supporting full recovery in many more to give parents the confidence that with aggressive proper treatment this can be fully reversed.

 

-Wendy

 

Wendy, what you say makes sense. But I think what you're saying is you are managing the condition effectively. All of us need to do the same with our kids.

Best,

Michael

 

 

[

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SF MOM

 

I am a full believer of healing the gut after reading "children with Starving Brains" (Jaquelyn McCandless). The only problem I had when trying probiotics is the monster reaction that dd had. I started off slowly building up and used Nystatin also. We had to stop after a week as the side effects gave her to the most painful tics that she just couldn't live through. She stopped eating, couldn't sleep and scratched herself raw.

 

I was convinced that this was a massive toxic assult on her body, but the DAN dr thought it was an allergic reaction. We wanted to use bentonite clay, but could not find a suitable product for small children. Can I ask, is it non toxic and safe for a 7 year old?

 

I am 100% sure that my dd has a leaky gut, and so is the DAN dr. I'm scared to try a gut healing experience again, but if the clay removes all the toxins then this gives me hope to try again. How bad was the die off?

 

Thanks for your help.

 

Jules

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Michael,

 

I totally understand you point of management but at some point we do expect to stop most of what we are currently doing. Letting go of antibiotics will be tough for us but I hope to trust the recovery process at some point to be able to do that...... call it the ultimate goal for sometime in the future.

 

AND, our experience is that we attended a playdate in 2007 and one of the children present had RF and 4 out of 5 children in attendance are now PANDAS and the 5th is showing classic symptoms and being tested. Even my own children are not fully genetically related!!! It was the age/state of immune system up against a resilient strain of strep that caused this........ the odds of it effecting all children and them all having a predisposition is extremely low. Call it winning the lottery with the ill effects of PANDAS as the prize. I truly believe their immune systems can be 'redeveloped' and outgrow the cross reactive 'bad' antibodies but it takes time AND while we are attempting to do this our children are being repeatedly exposed to more illnesses. BUT, it has been done, so it can be done again. There is hope.

 

Our son's friend who had RF is having his second IVIG is next week and it is amazing how his recovery process is very similar to ours. It is also amazing how similar some of the symptoms have been and the timeframe in which they happened and how they are now resolving.

 

Anyway...... I wish you the best of luck with your son and I look forward to future updates of recovery.

 

-Wendy

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