Puberty - Does it solve this?

[pandakid11]

HI

I haven't been able to get a straight answer but will puberty finally get rid of this? And, is this a vaccine injury? Are there any sites or references that one can offer? Thanks

[kos_mom]

I understand that puberty takes care of it for many in terms of new exacerbations. This is largely because some 98% of people become immune to strep by the time they are 12 per Swedo. Of the remaining 2%, many become immune by 18.

 

I hate to be discouraging on this, but I have two kids over 18 who are still getting strep and coming down with symptoms. I think the tendency to not get the immunity may be inherited. My mother had strep at least once if not twice every year of her adulthood. (My kids' paternal side is significant for rheumatic fever. In the words of my DD they lost they genetic lottery.)

 

Dr. L said my kids were way too old to be getting strep and giving it too each other...not that it wasn't happening, just that the odds are tremendously against.

[NancyD]

Ours got MUCH WORSE with puberty. Sorry!

[peglem]

Puberty didn't solve anything for us, either.

[bigmighty]

I can't find a source, but I seem to recall reading that about 40% of boys stop getting new PANS exacerbations after puberty.

[EAMom]

I hate to be discouraging on this, but I have two kids over 18 who are still getting strep and coming down with symptoms. I think the tendency to not get the immunity may be inherited.

 

I got strep in 2009. My doctor was surprised (my lymph nodes were so big you could see them, and the joint of my ring finger swelled up so much I was worried I would have to cut my ring off). I don't remember if I ever had strep as a kid. I have a distant memory of being tested once and that time it was neg.

 

But, the other times when my kids cultured positive for strep, I didn't get it.

 

Anyway, what I've heard is that it can get better a few years AFTER puberty.

Edited October 18, 2012 by EAMom

[cobbiemommy]

Ds, is 13 and still getting strep and is still very symptomatic of PANDAs, although doing much better. DD is 16 and still getting strep. The worst part, I am 43 and still get strep about once a year. UGH. I think it is just luck of the genetic draw. A good immunologist could help you with this question.

[pandakid11]

Hi

This is an absolute nightmare. He now has converted his anxiety into walking problems and school doesn't want him there with walking issues. He also is somatizing pain. His unconscious seems out of control and I don't know what to do to get it to function properly. His fight or flight is on all the time. He never missed a day of school until this hit last November. His ASO has remained high. Doctors are split. Some think it is PANDAS and then the ones that don't know what PANDAS is, think it is all conversion disorder.

 

It is a mess. He feels like garbage. Don't know what to do. He is so nauseated.

[Missmom]

Still so much we don't know about this. My gut tells me this is not the result of vaccine just as rheumatic fever is not a result of vaccine, however once your child gets pandas symptoms I do believe that vaccines can further exasperbate the problem...the vaccines cause the immune response probably even worse than the standard cold or virus because vaccines are injected directly into the blood stream. Your body does not even have time to mount an attack on it before it directly gets into your bloodstream. Anyway, I am no medical expert so please dont take my word on this, but i am just trying to figure it all out like everyone else here.

 

I hope this gets better with puberty. The neurologist we see does seem to believe it will probably get better. She is very positive about it. Problem I am having is just trying to figure out when boys do hit puberty and mature. Is it the voice changing? With girls it is easy but I don't know about boys.... Anybody who knows any answers on this please chime in.

 

Thanks bye

[kos_mom]

Could you describing the walking problems a bit more? My DD started complaining of leg pains, then knee pains, and finally after months of walking with her knees inward, hip and back pain. We got a lot of somatization type indications from the pediatrician and the orthopedist she kept sending us too.

 

Finally, when she could barely walk half a block and then only with the smallest pigeon-toed steps, or get up the stairs, she ended up at a neurosurgeon who promptly identified her extreme spasticity in her legs and accompanying hyperreflexia--these are not associated with somataform disorders.

 

Dr. L's working theory is that it is all associated with her Pandas--we are doing IVIG and will see where we go from there. If you do a search you will find leg and knee pain can be associated with Pandas--it is very common in the sister disease of rheumatic fever. Dr. L said DD is definitely not the first patient she's had with extreme difficulty walking. Will add that DD has significant nausea, vomiting problem as well, which Dr. L feels may be connected to the Pandas as well.

 

Conversion disorder is usually a very unhelpful diagnosis and you will get no treatment to deal with it even on its own terms. My daughter got this dx sometime ago in connection with seizures (positive EEG from local epileptologist but famous hospital was unimpressed and said conversion disorder). So I looked up what to do about this and found a great article about successes in treating it with community based resources. It was written by a doctor at our local children's hospital. So I wrote him asking what programs he could recommend in our city for conversion disorder thinking of course that he had based his paper on resources local to us. I never heard back. So one wonders if this was a conceptual piece written to look like it was based on actual experience. Very frustrating to have papers say this or that can be treated in this way and we've had great success and then you find the treatment they describe is not available anywhere, perhaps was never available to the public, and was perhaps just devised for a few month period for purposes of writing the paper but they don't sctually say that. All very misleading intellectually.

 

It may sound extreme, but how about a wheelchair for your DS--then the school would have to deal. A lesser step would be a cane.

[PANDASmcnuggetsw/fry/coke]

PANDAKID11,

 

I am so sorry your son is struggling so much. It can be so agonizing to see your child suffer so much. I don't remember seeing your son’s total history, but it sounds like strep is your culprit? Everyone is answering on the basis of what happens with strep as you get older. Of course it’s not just strep. Our daughter is 14 and has never showed one strep infection in her life. (I know hard to believe) but we have a pretty good record of her medical history. For her it WAS a vaccine, which lowered her immune system, letting Mycoplamsa-p waltz right in and set up home for several months. And during this WAMMO, not even overnight, but like a flip of a switch during the day, a sudden and severe PANS onset. That was at 12, right before puberty. There was even a time while she was on the basketball team where overnight she developed a weird gait to her run. That lasted a few weeks, then disappeared just as quickly. It was almost painful to watch her play, but she didn't seem to notice it. Now she is going through puberty 2 1/2 years later and we just did the Florida program and trying a low dose ssri.....just to tell ya where we are now.

 

So to answer you question, does puberty end it? For us, no, but we are out of the exorcist woods and thankful for that. We are being as aggressive as we can on this short of plasmapherisis I think. Which we may still do, after we receive results from blood work we have just completed.

 

But, I would say that things are looking up. I have hope that this will be a vague and unpleasant memory one day. I am having more and more confidence that she will kick this “stuff” off her land and get healthier and healthier over time. My prayer is that you keep this hope up for your son as well. It feels like total darkness now, I know...but it WILL get better. Even when it is not perfect, it will get better. Get your rest and take care of yourself so you can be strong and show him those signs of hope.

 

Pandas McNuggests w/fry/coke

Edited October 18, 2012 by PANDASmcnuggetsw/fry/coke

[MomWithOCDSon]

Hi --

 

I don't know if puberty will put an "end" to PANDAS/PANS, and frankly, because of all the interventions, it's hard to tease out the impact of each thing . . . the meds, the physical maturation, a slowing of the hormonal onslaught, or a combination of all three.

 

My DS , as someone else described, came out of his "exorcist" phase after about 3 months of abx, and then keeping him on abx for nearly 2 years contributed to slow, but steady improvements over that time period. There would also be some steps back . . . "sawtooth," many call it. But overall, the trajectory was positive.

 

I, too, have felt that the onset of puberty complicated things for him, and may have even potentially been the "straw that broke the camels back" in terms of his PANDAS going off the deep end at 12. Now, at 15, he still hasn't had the big growth spurt emblematic of puberty's peak, and believe it or not, his voice hasn't dropped fully yet, either. So I'm certain we haven't come out the other side of puberty yet, but he's much, much, MUCH better in terms of PANDAS and the behaviors that accompanied it.

 

I don't know what your treatment course has been, or the duration of it, but I would encourage you to continue to treat your DS medically, in addition to getting some therapy to help him deal with the feelings all of this invokes in him.

 

Hang in there and keep pressing forward with treatment.

[MomWithOCDSon]

HI

And, is this a vaccine injury? Are there any sites or references that one can offer? Thanks

 

I don't have any references for directly connecting PANDAS/PANS with vaccine injury, and given how committed even NIMH appears to be to vaccinating our kids against the general childhood diseases, I doubt there's much out there.

 

What Dr. Kenneth Bock has said in his speeches at Autism One and in some of his writing, however, is that an immature immune system can only process so much, and that, like a glass that finally reaches a point at which it spills over, our immune systems are much the same.

 

Not unlike experiences with sudden onset of autism following vaccinations, you'll find stories here of kids who's PANDAS appeared or resurged following a flu mist or flu vaccine, and perhaps there are examples of onset following other vaccines, as well. So, is PANDAS literally vaccine injury? I think that depends on your perspective. In some instances, a vaccine may have been the straw that broke the camel's back, but as with many things, it seems likely that it is a combination of "injuries" to the immune system.

[PANDASmcnuggetsw/fry/coke]

I did see a site that documented a link between Hep B shots and autoimmune illness and one of the specific symptoms observed from the autoimmune illness was neuropsych symptoms. I'll try to find it tomorrow...it's getting late here.

Ours was Hep A. and Dr K and Dr T saw it as a nexus to her illness, especially given the timing. I also found on a vax injury site that Hep A and B caused similar injuries, but it was more vague.

 

 

Is there a specific vax you think triggered it all?

[mdmom]

Sorry to hijack the post....

 

Pandasmcnuggets ---

 

 

I Would love the link to the article you are talking about. My son's IVIG approval from insurance is still being held up because I refuse to put him through a vaccination challenge to prove CVID.

 

I've been combing the internet for months looking for vaccine/autoimmune illness articles.

 

Pandaskid11 - Our DS15 has not outgrown PANS/PANDAS, but it does seem he is out of the "exorcist" phase and he is reacting less dramatically to new illnesses. But we've been treating aggressively for almost 2 years now.