cured?

[tired mom]

I may be wrong but I can remember when I started researching Pandas I read that a percentage of children will outgrow this disorder by late adolescense. So I must ask was this 19 year old boy cured or did he simply outgrow it????????

[MomWithOCDSon]

I may be wrong but I can remember when I started researching Pandas I read that a percentage of children will outgrow this disorder by late adolescense. So I must ask was this 19 year old boy cured or did he simply outgrow it????????

 

Which 19-year-old boy? Sammy Maloney?

 

Maybe it's a combination. Maybe medical interventions helped keep him on the planet initially and gave his own immune system a chance to recover and "stabilize." Hormones certainly do appear to play a role.

[ajcire]

I thought that he still had symptoms pop up now and again but that he is able to tell and get himself on antibiotics... I might have read that wrong though.

[momto2pandas]

Yes, he said in his TV interview that he still gets symptoms but treats himself with antibiotics.

 

I thought that he still had symptoms pop up now and again but that he is able to tell and get himself on antibiotics... I might have read that wrong though.

[faith]

They treat with abx only when he seems to get or be exposed to strep, not just when symptoms pop up. He has also remained on 'I think' strattera.

 

edit: ...

just to clarify, it does seem to me that this boy is cured at least in the way that he is leaps and bounds away from what his original symtoms were.

[EAMom]

I would call it "remission"...if he were cured he wouldn't have symptoms when he got strep.

 

Also, it is hard to say if his ADHD is a "baseline change" or a separate issue altogether.

[simplygina]

I may be wrong but I can remember when I started researching Pandas I read that a percentage of children will outgrow this disorder by late adolescense. So I must ask was this 19 year old boy cured or did he simply outgrow it????????

 

 

I think the abx got him back to functional and finally back to baseline. I think most people become less susceptible to strep by 19 or so, which has helped. It will be interesting to see if he continues to need abx when exposed to strep as he ages. I used to get strep quite a bit as a kid. I haven't ever caught it from my kids, so I do think age helps as well.

 

The boy in Against Medical Advice also grew out of it (mostly, unless he is under a lot of stress) by college but he went through years (tics started at 5, OCD soon after) of pure ###### first. He wasn't diagnosed PANDAS, but I kind of think he probably was. Poor kid was put on so many meds and they all seemed to make it worse. He also self medicated with alcohol and ended up in rehab at 15.

 

Whether the abx "cure" them, or just help them function until their body adjusts, I would certainly rather go the Sammy route.

[Worried_Dad]

Good point about remission: our son is following the Sammy Maloney example and has similarly improved dramatically on the 2000 mg daily augmentin XR, but I don't know if it's really a "cure." What I do know: if he gets back to baseline and can control future strep exposures with a shorter term of XR, I'll settle for remission over what we've had for the past 3 years!

 

As far as the Stattera goes: we're considering that option, too. Six months ago, the OCD was so overwhelming that all other symptoms pretty much faded into the background. Now - after 5 months of XR - the OCD has diminished to the point that the ADHD stuff is much more noticeable. Our son now complains that he can't sit still, can't do just one thing at a time, can't focus or concentrate for long. Before PANDAS, he was our "sit quietly and read a book for hours" kid - opposite of ADHD.

 

So I strongly suspect that the ADHD is due to PANDAS, for both Sammy and our son... but who knows with this darned disorder!

 

 

I would call it "remission"...if he were cured he wouldn't have symptoms when he got strep.

 

Also, it is hard to say if his ADHD is a "baseline change" or a separate issue altogether.

[simplygina]

During the presentation Dr. Swedo gave at the autism conference (2006?) she said that the tics, ocd and adhd all went together but the symptoms of one over the other would depend on where they saw the lesion on the basal ganglia. At least I think that is where I heard that.

[reactive]

Good point about remission: our son is following the Sammy Maloney example and has similarly improved dramatically on the 2000 mg daily augmentin XR, but I don't know if it's really a "cure." What I do know: if he gets back to baseline and can control future strep exposures with a shorter term of XR, I'll settle for remission over what we've had for the past 3 years!

 

As far as the Stattera goes: we're considering that option, too. Six months ago, the OCD was so overwhelming that all other symptoms pretty much faded into the background. Now - after 5 months of XR - the OCD has diminished to the point that the ADHD stuff is much more noticeable. Our son now complains that he can't sit still, can't do just one thing at a time, can't focus or concentrate for long. Before PANDAS, he was our "sit quietly and read a book for hours" kid - opposite of ADHD.

 

So I strongly suspect that the ADHD is due to PANDAS, for both Sammy and our son... but who knows with this darned disorder!

 

 

I would call it "remission"...if he were cured he wouldn't have symptoms when he got strep.

 

Also, it is hard to say if his ADHD is a "baseline change" or a separate issue altogether.

After watching my ds symptoms for 5 years now, I can say for certain: sometimes ds first symptom of strep is vocal tic, followed by sore throat and fever followed by + strep test followed by start of antibiotic followed by what I call ADHD behavior. He does not ALWAYS get ADHD symptoms but always has tics. My ds is extremely well behaved, "boy scout" if you will. Our ped has seen him explode with ADHD in her office...he would literally crawl under the exam table... he could roll on the floor in circles at the grocery store....I had to take eval forms for ADHD to the teachers and the teachers looked at me like I had 3 heads...he never did that at school, but the symptoms of ADHD were with strep, and I had kept him home, so they were gone by the time he went back.

 

Interestingly, my ds has flares with some viruses, but not all....I have never seen the ADHD component in my ds with a virus, only strep.

[Joan Pandas Mom]

Good point about remission: our son is following the Sammy Maloney example and has similarly improved dramatically on the 2000 mg daily augmentin XR, but I don't know if it's really a "cure." What I do know: if he gets back to baseline and can control future strep exposures with a shorter term of XR, I'll settle for remission over what we've had for the past 3 years!

 

As far as the Stattera goes: we're considering that option, too. Six months ago, the OCD was so overwhelming that all other symptoms pretty much faded into the background. Now - after 5 months of XR - the OCD has diminished to the point that the ADHD stuff is much more noticeable. Our son now complains that he can't sit still, can't do just one thing at a time, can't focus or concentrate for long. Before PANDAS, he was our "sit quietly and read a book for hours" kid - opposite of ADHD.

 

So I strongly suspect that the ADHD is due to PANDAS, for both Sammy and our son... but who knows with this darned disorder!

 

 

I would call it "remission"...if he were cured he wouldn't have symptoms when he got strep.

 

Also, it is hard to say if his ADHD is a "baseline change" or a separate issue altogether.

[Joan Pandas Mom]

Worried Dad, my son's story is very similar to your son's. We are not back to baseline yet, actually symptoms have dialed up a little. I have been thinking about Staterra too. Do you know when Sammy started it? Were his OCD symptoms pretty much under control first?

 

 

 

Good point about remission: our son is following the Sammy Maloney example and has similarly improved dramatically on the 2000 mg daily augmentin XR, but I don't know if it's really a "cure." What I do know: if he gets back to baseline and can control future strep exposures with a shorter term of XR, I'll settle for remission over what we've had for the past 3 years!

 

As far as the Stattera goes: we're considering that option, too. Six months ago, the OCD was so overwhelming that all other symptoms pretty much faded into the background. Now - after 5 months of XR - the OCD has diminished to the point that the ADHD stuff is much more noticeable. Our son now complains that he can't sit still, can't do just one thing at a time, can't focus or concentrate for long. Before PANDAS, he was our "sit quietly and read a book for hours" kid - opposite of ADHD.

 

So I strongly suspect that the ADHD is due to PANDAS, for both Sammy and our son... but who knows with this darned disorder!

 

 

I would call it "remission"...if he were cured he wouldn't have symptoms when he got strep.

 

Also, it is hard to say if his ADHD is a "baseline change" or a separate issue altogether.

[Worried_Dad]

Beth M told me that Sammy started Strattera while he still had some OCD issues. She felt that it helped him "overcome the final obstacles" on his road to recovery, including some of the big rituals that had become very ingrained behaviors. She thought it made a big difference for him.

 

We're going to explore this option, at least, with our local DAN doc and/or Dr. K. Seems like it's worth a trial.

 

 

Worried Dad, my son's story is very similar to your son's. We are not back to baseline yet, actually symptoms have dialed up a little. I have been thinking about Staterra too. Do you know when Sammy started it? Were his OCD symptoms pretty much under control first?

 

 

 

Good point about remission: our son is following the Sammy Maloney example and has similarly improved dramatically on the 2000 mg daily augmentin XR, but I don't know if it's really a "cure." What I do know: if he gets back to baseline and can control future strep exposures with a shorter term of XR, I'll settle for remission over what we've had for the past 3 years!

 

As far as the Stattera goes: we're considering that option, too. Six months ago, the OCD was so overwhelming that all other symptoms pretty much faded into the background. Now - after 5 months of XR - the OCD has diminished to the point that the ADHD stuff is much more noticeable. Our son now complains that he can't sit still, can't do just one thing at a time, can't focus or concentrate for long. Before PANDAS, he was our "sit quietly and read a book for hours" kid - opposite of ADHD.

 

So I strongly suspect that the ADHD is due to PANDAS, for both Sammy and our son... but who knows with this darned disorder!

 

 

I would call it "remission"...if he were cured he wouldn't have symptoms when he got strep.

 

Also, it is hard to say if his ADHD is a "baseline change" or a separate issue altogether.

[MomWithOCDSon]

Worried Dad & Joan --

 

Either in keeping with "Saving Sammy" or just on his own protocol, our DS12's doctor prescribed Intuniv -- a non-stimulant ADHD med in the same vein as Straterra -- about 3 months ago. Like your kids, our DS was reporting feeling distracted and jumpy at school . . . having trouble staying in his seat during class . . . even though the anxiety that had previously plagued him has been substantively subdued by the Augmentin XR.

 

I am happy to report that he is doing great. He remains on Augmentin XR and the Intuniv, is in school full time. He's stopped complaining about feeling perpetually antsy, he's doing well academically, completing classwork and quizzes in the alloted time, etc. I do think that the Intuniv has helped him and has worked well as an adjunct to the abx therapy.

 

 

Beth M told me that Sammy started Strattera while he still had some OCD issues. She felt that it helped him "overcome the final obstacles" on his road to recovery, including some of the big rituals that had become very ingrained behaviors. She thought it made a big difference for him.

 

We're going to explore this option, at least, with our local DAN doc and/or Dr. K. Seems like it's worth a trial.

 

 

Worried Dad, my son's story is very similar to your son's. We are not back to baseline yet, actually symptoms have dialed up a little. I have been thinking about Staterra too. Do you know when Sammy started it? Were his OCD symptoms pretty much under control first?

 

 

 

Good point about remission: our son is following the Sammy Maloney example and has similarly improved dramatically on the 2000 mg daily augmentin XR, but I don't know if it's really a "cure." What I do know: if he gets back to baseline and can control future strep exposures with a shorter term of XR, I'll settle for remission over what we've had for the past 3 years!

 

As far as the Stattera goes: we're considering that option, too. Six months ago, the OCD was so overwhelming that all other symptoms pretty much faded into the background. Now - after 5 months of XR - the OCD has diminished to the point that the ADHD stuff is much more noticeable. Our son now complains that he can't sit still, can't do just one thing at a time, can't focus or concentrate for long. Before PANDAS, he was our "sit quietly and read a book for hours" kid - opposite of ADHD.

 

So I strongly suspect that the ADHD is due to PANDAS, for both Sammy and our son... but who knows with this darned disorder!

 

 

I would call it "remission"...if he were cured he wouldn't have symptoms when he got strep.

 

Also, it is hard to say if his ADHD is a "baseline change" or a separate issue altogether.