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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

Missmom

In need of reassurance

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Not to sound trite here, but P.Mom, can you explain the difference between "permanent damage" and "pathways can be permanently altered?" I'm not seeing any difference in the two statements. If the brain isn't damaged, per se, but the pathways are permanently altered.....and the symptoms/outcome is the same, what's really the difference? Don't mean to be a Debbie Downer, but can't quite wrap my head around this.

 

Also, it's so wonderful that your boys are doing so great. Some of us, however, do not have classic strep pandas, and it makes our journeys much more challenging. Not from the perspective of being gut-wrenching for US parents to deal with, but from a treatment perspective.

Not to speak for P.Mom, but the distinction I see is that "permanent damage" means tissue has been destroyed, the nerve cells are dead. An analogy would be like the tissue damage in type1 diabetes, where the insulin producing cells are destroyed, so the body can no longer make insulin.

But "pathways permanently altered" means that there is a stimulus-automatic response developed (learned). But, new pathways can be built and strengthened through practice. So, its like your 1st language is an automatic pathway that has been developed in your brain. But you can learn a new language- it doesn't replace the other pathway (1st language acquisition), but it can also become automatic. So, OCD behaviors can forge permanent pathways and become automatic, but you can still form other pathways that can be strengthened and also become automatic.

 

 

Thanks Peg....couldn't have explained it better myself. Elijomom.....yes, I know many are not dealing with "classic" strep PANDAS. The original poster was looking for success stories....stories of encouragement and reassurance. She did not clarify a strep case, a myco case, etc. So, I felt my story was precisely what she was looking for ......a story of hope.

 

Oh...I am not sure that the treatment for strep induced vs. myco induced, as examples, would be any different. Make sure the infection is treated (abx)....treat the autoimmune response (IVIG, PEX, steroids)....prevent future infections as best you can. ( proph. abx, tonsil/adenoid removal, etc...atleast that is as far as science has gotten us)

Edited by P.Mom

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Not to sound trite here, but P.Mom, can you explain the difference between "permanent damage" and "pathways can be permanently altered?" I'm not seeing any difference in the two statements. If the brain isn't damaged, per se, but the pathways are permanently altered.....and the symptoms/outcome is the same, what's really the difference? Don't mean to be a Debbie Downer, but can't quite wrap my head around this.

 

Also, it's so wonderful that your boys are doing so great. Some of us, however, do not have classic strep pandas, and it makes our journeys much more challenging. Not from the perspective of being gut-wrenching for US parents to deal with, but from a treatment perspective.

Not to speak for P.Mom, but the distinction I see is that "permanent damage" means tissue has been destroyed, the nerve cells are dead. An analogy would be like the tissue damage in type1 diabetes, where the insulin producing cells are destroyed, so the body can no longer make insulin.

But "pathways permanently altered" means that there is a stimulus-automatic response developed (learned). But, new pathways can be built and strengthened through practice. So, its like your 1st language is an automatic pathway that has been developed in your brain. But you can learn a new language- it doesn't replace the other pathway (1st language acquisition), but it can also become automatic. So, OCD behaviors can forge permanent pathways and become automatic, but you can still form other pathways that can be strengthened and also become automatic.

 

Very nice peglem.

i believe the same is true for tics. now i need to quiet that path enough so the "normal" dominant path can reestablish itself. I just think that the path on tics may be more complex or wider or deeper or any other analagy.

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Not to sound trite here, but P.Mom, can you explain the difference between "permanent damage" and "pathways can be permanently altered?" I'm not seeing any difference in the two statements. If the brain isn't damaged, per se, but the pathways are permanently altered.....and the symptoms/outcome is the same, what's really the difference? Don't mean to be a Debbie Downer, but can't quite wrap my head around this.

 

Also, it's so wonderful that your boys are doing so great. Some of us, however, do not have classic strep pandas, and it makes our journeys much more challenging. Not from the perspective of being gut-wrenching for US parents to deal with, but from a treatment perspective.

Not to speak for P.Mom, but the distinction I see is that "permanent damage" means tissue has been destroyed, the nerve cells are dead. An analogy would be like the tissue damage in type1 diabetes, where the insulin producing cells are destroyed, so the body can no longer make insulin.

But "pathways permanently altered" means that there is a stimulus-automatic response developed (learned). But, new pathways can be built and strengthened through practice. So, its like your 1st language is an automatic pathway that has been developed in your brain. But you can learn a new language- it doesn't replace the other pathway (1st language acquisition), but it can also become automatic. So, OCD behaviors can forge permanent pathways and become automatic, but you can still form other pathways that can be strengthened and also become automatic.

 

Very nice peglem.

i believe the same is true for tics. now i need to quiet that path enough so the "normal" dominant path can reestablish itself. I just think that the path on tics may be more complex or wider or deeper or any other analagy.

I actually wondered about tics as I wrote that...do tic movements become "learned" the same way as ocd? I guess it seems to me like ocd is more aberrant thought processing and tics are more...IDN, automatic?

For my daughter, there isn't much "normal" to fall back on- we really have to start almost from scratch- building new pathways since she started in infancy w/ this crap. She did manage to build some speech before the BigOne took it all away, and I suppose that's still there somewhere.

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i'm not sure, as none of us are, what is happening with tics.

though i can testify to complete remission from them numberous times.

so..did each onset dig a new trench a little farther and deeper?

for ds12 it was an eye blink from 3-5yrs of age remitting until next strep.

on my own i put the connection together.

then i got scared at age 5, when the tic was no longer a blink but a shoulder shrug...and that's when i found this site.

but i didn't really need or know more than this site anyway...though i read quite a bit....abx was given and life was great!

so the first was simple tic

the second i guess is more complex. but they were the sole and only tic that presented with infection.

did the trench get deeper or longer?

and so it went with complete remission.

Until all H(*&^^** broke loose 4/6/09...I hate April...and in my notes ds always had an episode in late March...every year!

now his tics are vocal, complex, and can be self injuring.

does that mean the trench cut a new path entirely and it depends on overflow of enzymes, cytickoes, t cells, what ever, and information is just flowing through his body?

Now, can i damn up, fill in, that trench, until time erases it and make everything flow back down the main river...

Sorry just thinking this out loud.

oh ps...when ds does get to close to 90%, they sometimes look like a habit and may just be that and we were actully 95% at times...idk

pss...no eye blink since 5yrs of age

no shoulder shrug since 9..if he does something with his shoulders it's quite different

Edited by Fixit

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i'm not sure, as none of us are, what is happening with tics.

though i can testify to complete remission from them numberous times.

so..did each onset dig a new trench a little farther and deeper?

for ds12 it was an eye blink from 3-5yrs of age remitting until next strep.

on my own i put the connection together.

then i got scared at age 5, when the tic was no longer a blink but a shoulder shrug...and that's when i found this site.

but i didn't really need or know more than this site anyway...though i read quite a bit....abx was given and life was great!

so the first was simple tic

the second i guess is more complex. but they were the sole and only tic that presented with infection.

did the trench get deeper or longer?

and so it went with complete remission.

Until all H(*&^^** broke loose 4/6/09...I hate April...and in my notes ds always had an episode in late March...every year!

now his tics are vocal, complex, and can be self injuring.

does that mean the trench cut a new path entirely and it depends on overflow of enzymes, cytickoes, t cells, what ever, and information is just flowing through his body?

Now, can i damn up, fill in, that trench, until time erases it and make everything flow back down the main river...

Sorry just thinking this out loud.

oh ps...when ds does get to close to 90%, they sometimes look like a habit and may just be that and we were actully 95% at times...idk

pss...no eye blink since 5yrs of age

no shoulder shrug since 9..if he does something with his shoulders it's quite different

 

i just reread the opening post and wanted missmom to know i still expect to recover my child from tics...though being human it is normal to get down.

my other 2 are in remission. and even though i was on it before. i have stuff at the ready and team of drs to work with to keep them that way.

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i just reread the opening post and wanted missmom to know i still expect to recover my child from tics...though being human it is normal to get down.

my other 2 are in remission. and even though i was on it before. i have stuff at the ready and team of drs to work with to keep them that way.

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Missmom,

 

My DD, now 16, had severe tics (both vocal and motor) from PANDAS. They were at their worst around age 12. I was so worried about how other kids would react. Nothing helped until we did IVIg. It took weeks to see any change but around weeks 7-12 we saw ~75% reduction. And within a year we saw a 100% reduction. To this day, the tics have never returned. Conversely, her OCD, which was fairly mild at age 12, has gotten worse over the years. We have since discovered that she has Lyme, Bartonella, and MycoP in addition to PANDAS, as well as homozygous MTHFR c677t mutation and we are treating her for all this. The tics and the other symptoms are not permanent -- they can be treated successfully -- and there are many success stories out there. You need to test for all possible underlying infections and treat them accordingly. It takes time, patience, and a good team of doctors. Hang in there, pace yourself, and see one of the experts recommended by this forum.

 

Nancy

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thanks peglem for the explanation. i almost feel defeated sometimes, especially when hearing Swedo say it can become permanent. I don't care if it's tissue death or permanent pathways, permanent symptoms means permanent symptoms.

 

P.Mom---I hope I didn't offend you. I appreciate the success stories too. I just keep looking to find one with a kid with tics, ocd, adhd, who went undiagnosed for a few years, and who is triggered by viruses too, who has become chronic...and who got 100% remission for a substantial period of time. There really is nothing prophylactic to do for Pitand (viral triggered), although we still are on Keflex once a day just in case strep is an issue, as it was one time with no symptoms other than increased tics and night terrors added to the already chronic state.

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Thank you all for all of your responses. You are all very brave moms who have been willing to try almost anything to cure your children, even if it meant trying controversial, scary, and unconventional treatments. You really are blazing a trail for all of us newbies out here who are just trying to figure it all out. You all seem so very educated and at this point I would bet that most of you could teach a thing or two to a lot of medical professionals out there. I enjoyed reading all of your responses and hope to hear many many more success stories.

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