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sammy ?/Abx treatment

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I did read the book awhile back, but I have a couple questions/comments.

 

Is it true that Sammy had ONE sudden onset episode, with nothing minor brewing previously, and from that ONE sudden onset, he went chronic? I mean, that was it, right? He contracted asymptomatic strep at age 10, mom had no idea, and he went from bad to worse and stayed there until high dose abx, correct? No sawtooth whatsoever? Is that pretty unusual, even among all us zebras? Or at least unusual for the over 5 y.o. child?

 

I'm TOTALLY speculating, but I wonder if Sammy was more the "got the really nasty strain of strep" kind of PANDAS and that those kind of PANDAS are the ones with the chronically high DNAse B; totally my wild speculation. Are these the "hyper-immune" kiddos and theoretically, there bodies are chronically co-producing an abundance of DNAse B, ASO (?) and anti-neuronal antibodies? That's why they can be "tracked" by DNAseB titers? So, they managed to achieve an "immuno-cool down" with high dose abx over several years... Is this the same or similar nasty strain in Dawn's family with the crazy high titers? (How r u all doing, btw?)

 

Another note, and take this for what it is worth, but when Dr. T spoke publicly with Beth several months back, he commented that Sammy continued to exhibit mild signs of OCD. The mother later requested he retract that statement, which he did. Dr T. said he made that comment based on his observations of the young man not on parent or patient's report. So, he saw something, albeit probably mild and not interfering with Sammy being a successful, accomplishing young man (maybe he was shaking his foot, rubbing his eyebrow, clearing his throat or shifting in his chair in a chronic, repetitive manner that would only be noticed if you were looking for it?) It is with this in mind that I wonder if Sammy did indeed have any minor signs brewing as a child that were just "invisible" to the mom's eyes?

 

Last thing, promise; Is the ONE abx case being referred to by those discussing Dr. K's position; is that WorriedDad's child who did not experience success with multiple ivig, but has had success on high dose Augmentin or is that ONE an early detection case?

Edited by JAG10

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here's what i have written in my notes from dr. K at the OCF conference -- abx eventually all fail. he has given abx within 3 weeks of onset that are now asymptomatic.

 

so, no, i don't think he's referring to worried dad. and i don't think he's referring to ONE case. it sounded to me that he has had that experience of immediate treatment more than once.

 

as for symptoms that go unnoticed . . . previous to sudden onset for us, i referred to my son as having "a defiant streak" and "being more tantrum-prone than your average child". even with that, he was still an easy-going fun child. all seemed within the realm of normal, 2, 3, 4 year old behavior. certainly nothing we couldn't handle or would seek help for. in retrospect, i now think this has got to be related. he had confirmed strep at 22 months and sudden onset at 4.5. he had potty training issues at 3 -- we took him to ped who thought his throat looked like strep - rapid and culture were negative.

 

how long is this brewing for some/all kids?

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I did read the book awhile back, but I have a couple questions/comments.

 

Is it true that Sammy had ONE sudden onset episode, with nothing minor brewing previously, and from that ONE sudden onset, he went chronic? I mean, that was it, right? He contracted asymptomatic strep at age 10, mom had no idea, and he went from bad to worse and stayed there until high dose abx, correct? No sawtooth whatsoever? Is that pretty unusual, even among all us zebras? Or at least unusual for the over 5 y.o. child?

 

I'm TOTALLY speculating, but I wonder if Sammy was more the "got the really nasty strain of strep" kind of PANDAS and that those kind of PANDAS are the ones with the chronically high DNAse B; totally my wild speculation. Are these the "hyper-immune" kiddos and theoretically, there bodies are chronically co-producing an abundance of DNAse B, ASO (?) and anti-neuronal antibodies? That's why they can be "tracked" by DNAseB titers? So, they managed to achieve an "immuno-cool down" with high dose abx over several years... Is this the same or similar nasty strain in Dawn's family with the crazy high titers? (How r u all doing, btw?)

 

Another note, and take this for what it is worth, but when Dr. T spoke publicly with Beth several months back, he commented that Sammy continued to exhibit mild signs of OCD. The mother later requested he retract that statement, which he did. Dr T. said he made that comment based on his observations of the young man not on parent or patient's report. So, he saw something, albeit probably mild and not interfering with Sammy being a successful, accomplishing young man (maybe he was shaking his foot, rubbing his eyebrow, clearing his throat or shifting in his chair in a chronic, repetitive manner that would only be noticed if you were looking for it?) It is with this in mind that I wonder if Sammy did indeed have any minor signs brewing as a child that were just "invisible" to the mom's eyes?

 

Last thing, promise; Is the ONE abx case being referred to by those discussing Dr. K's position; is that WorriedDad's child who did not experience success with multiple ivig, but has had success on high dose Augmentin or is that ONE an early detection case?

 

Well, the book has no mention of previous problems. But, I think it's entirely possible that Sammy had previous low-grade undiagnosed issues, just like so many of our kids did.

 

That is interesting about Dr. T. ;) Certainly a person could have low levels of OCD and/or anxiety and still function very well in society.

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I was confused by the recent email regarding Sammy as well. The email referred to 6 years of remission but at the conference, Beth and Dr Nicolaides stated at the end of the presentation that it's been 1.5 yrs since the last episode and that when exposed to strep Sammy still feels symptoms coming on, may still see invisible walls, but that 2 weeks of abx have succeeded in putting things back into remission, however they are defining it. So the story is not clear to me. I think everyone would agree he's far far better than that dark place. So I don't mean to detract from an obvious recovery. I'm just not clear if all Pandas worries are forever behind him. Perhaps someone who corresponds with Beth can get clarification.

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Certainly a person could have low levels of OCD and/or anxiety and still function very well in society.

 

I think that to succeed in today's society you have to have low levels of OCD - but your OCD needs to be socially appropriate - neatness, organization, time etc. I don't think you can be a high achiever without it. Look how many gifted kids don't finish school or don't do well because they cannot focus or obsess on one thing.

Edited by mkur

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Saving Sammy, page 4:

 

"Prior to the onset sixteen months ago, Sammy did not exhibit any of the behaviors outlined above, with one exception. Four years ago, in the winter of third grade, he started having a tough time. He would curl the fingers of his left hand up and into his sleeve. We eventually figured out that he had a learning disability in reading. With a special reading program in place to address this challenge, the hand gradually dropped down and out of the sleeve."

 

Page 32:

 

"But I knew he (Sammy) was referring to the child psychologist he'd seen briefly in third grade when I thought he might be having some emotional issues. The sessions ended when I'd realized that what he actually needed was a different reading program."

 

Pages 37 & 38:

 

"New behaviors continued to come at a fever pitch. Sammy stopped using his hands; they shrunk up into his sleeves."

 

Somewhere else in the book, Beth writes that she is very proud of her son for overcoming his reading disability...but I can't find the exact page to quote it.

 

And on page 112, Beth Maloney writes that the result of the strep titer was 400

 

It's a healthy positive, but I don't think it would be considered off the charts like some of the families on this forum.

 

Nowhere in the book does Beth say that she believes his difficulty in third grade was related to PANDAS. However, I think she wrote enough that one could make a case that he had a previous PANDAS episode. I think it's related.

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Hi Karen!

 

I think what PANDAS does is that it finds the smallest weakness in a child's brain and expands it by 500%. It exaggerates some minor little quirk that otherwise would have gone unnoticed or would have been outgrown and makes it a huge deal.

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Hi Karen!

 

I think what PANDAS does is that it finds the smallest weakness in a child's brain and expands it by 500%. It exaggerates some minor little quirk that otherwise would have gone unnoticed or would have been outgrown and makes it a huge deal.

 

Hi...PhillyPA!! ;)

 

I totally agree...my daughter's quirky behaviors were the first to be magnified and disruptive when she had her bad PANDAS episode last year. One of the reason's that it took us a few weeks to really realize that something wasn't right was because some of the behaviors just weren't new.

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My child had scarlet fever when he was 4 but didn't develop PANDAS symptoms until 7 after a strep infection. Because he was older it was very hard to miss the change in behavior. He had 1.5 years of school to support the change. It could not be blamed on the terrible two's or three's. (the three's were worse for both my boys) So getting PANDAS later has a definite advantage from a diagnosis point of view. The disadvantage was I was blamed for all his problems.

 

I think Sammy has a strong immune system except for the "really nasty strain of strep" and that is why he was older when he got sick and why he recovered and still recovers with antibiotics only.

 

I think Dr N sees a subset of kids because of her high titer requirements. I think Dr K sees a subset of kids because their symptoms are so bad that the parents will drive or fly from anywhere to seek treatment when the regular medical treatments do not work. I think the NIH sees a subset of kids for the same reasons as Dr K.

 

My ds19 has had untreated PANDAS for 12 years - we knew he had PANDAS for 11 of those years. My son has high titers - 900's. We were told to treat symptoms (lots and lots of meds). My son is always sick and has been on lots of antibiotics for his symptoms - the usual 10 days (when he was little the usual was amox for 7 days)

 

My son could be the poster child for how cheap a strep test and long term antibiotics are compared to conventional medical treatments. The problem is my child doesn't run a fever when he first gets strep, he pukes - it took me awhile to figure that out. The only benefit having been labeled as PANDAS is now his ped will do a strep test when he is sick - no antibiotics unless positive or has URI - then the usual 10 days. It has been trouble to watch my child get sick, start having problems at school and I cannot get any long term antibiotics even with high titers. He would recover or his meds masked the symptoms again for a while. My child was not saved and had a terrible school experience which he cannot forget because of PANDAS's OCD.

 

For me Saving Sammy offers hope. If Beth can just get the medical community to change a little today, children like my son would not have to live without hope. I know this is just the tip of the iceberg and I feel for everybody else. I hope Beth gets rich from this and anybody else who brings about change. I am more than willing to help them get there - I've bought 3 copies of her book and recommend it to all my friends and family.

 

If Sammy and his subset of PANDAS (whatever they need to call it) can get this ball rolling for any kind of change that will be good. Then the rest of you will have an easier time making the other changes that need to made. I don't need to preach to the choir. The more people in the fight the better.

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Last thing, promise; Is the ONE abx case being referred to by those discussing Dr. K's position; is that WorriedDad's child who did not experience success with multiple ivig, but has had success on high dose Augmentin or is that ONE an early detection case?

 

Not us - Dr. K told us about this one, too. As you mention, it was a uniquely early detection case, where the 1st episode of PANDAS was diagnosed within a couple of weeks and high-dose abx immediately administered. Dr. K said that this was the only instance in which abx alone did the trick for one of his PANDAS kids.

 

FYI - our son's onset, symptoms, progression mirrored Sammy's. He got very sick very fast, and never improved without major therapeutic intervention (high-dose abx, IVIG). So he was "chronic" in that his symptoms did not wane or resolve on their own, and he remained highly symptomatic for many months. Don't know how rare this is among the afflicted PANDAS children?

 

As far as earlier episodes go: my wife and I strongly suspect that a "mystery illness" that struck our son when he was 6 might have been the beginning of all this. The docs never reached a diagnosis then: just called it an "unknown viral or bacterial infection" that caused his white cell count to plummet and made his legs so weak he could not walk.

 

Whether Sammy's really "cured" or not, I don't know. I'm just praying that our son can manage his symptoms effectively with abx when needed and live a normal, happy life. That beats the heck out of the "nightmare realm" in which he was trapped for so long!

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Worried Dad,

 

We, too, had the "mystery illness". Our dd woke up one morning unable to sit up from bed, then unable to bear weight on legs. Called the ped, took her to the hospital, never got a real diagnosis. We were told something to the effect that she must have had an infection that settled in her joints. That was a couple years ago. I need to find out if that was before or after her first PANDAS event at 7.5 yrs of age . This exacerbation of PANDAS (at 11.5 yrs of age) has been intense for many months now. We really do need some kind of data/info crunching system to extrapolate the incidence of each symptom, patient history, course of treatment, effects of treatment, etc. So many symptoms, so many different responses to different abx, psych meds, ivig, pex...so much to sort out.

Mary

from Michigan

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Interesting! In the fall of 2006, my son suffered what appeared to be a series of three different infectious illnesses: (1) upper respiratory, (2) joints/muscles/"can't-walk," (3) nausea, "can't eat." Then January 1, 2007 all @*! broke loose. The joints/muscles/"can't walk" bug was nasty, but we just assumed it was a passing weird germ (like one my husband and I both caught years ago, that prevented us from lifting our arms for a few days). Hm....

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Us too! It was the fall of 2006 when all three of my children had strep and then 10 days later "WHAMO"! my son who was 13 at the time-goes off the deep end! Dr. T said once to me that there were a huge flux of PANDAS cases in late 2006-early 2007 which many believe was a terrible strain of strep going around.

 

Anybody else manifest on that timeframe??

 

 

Interesting! In the fall of 2006, my son suffered what appeared to be a series of three different infectious illnesses: (1) upper respiratory, (2) joints/muscles/"can't-walk," (3) nausea, "can't eat." Then January 1, 2007 all @*! broke loose. The joints/muscles/"can't walk" bug was nasty, but we just assumed it was a passing weird germ (like one my husband and I both caught years ago, that prevented us from lifting our arms for a few days). Hm....

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Yep, us too. Our PANDAS son came home from school in March 2007 with an extremely high fever (104), shaking and aching all over. The school told us that flu was rampant, so we thought that's all it was. He had no sore throat, no classic strep symptoms. Two weeks later, the rheumatic fever symptoms started (migratory polyarthritis, headache, muscle weakness, difficulty walking). Six weeks after that, the Sydenham chorea symptoms hit (seizure-like episodes, emotional lability, cognitive fog, extreme sensory defensiveness). His ARF/SC diagnosis was changed to PANDAS in 2008.

 

That original "mystery illness" was all the way back in 2003, though, in Ohio (near Cincinnati).

 

 

Us too! It was the fall of 2006 when all three of my children had strep and then 10 days later "WHAMO"! my son who was 13 at the time-goes off the deep end! Dr. T said once to me that there were a huge flux of PANDAS cases in late 2006-early 2007 which many believe was a terrible strain of strep going around.

 

Anybody else manifest on that timeframe??

 

 

Interesting! In the fall of 2006, my son suffered what appeared to be a series of three different infectious illnesses: (1) upper respiratory, (2) joints/muscles/"can't-walk," (3) nausea, "can't eat." Then January 1, 2007 all @*! broke loose. The joints/muscles/"can't walk" bug was nasty, but we just assumed it was a passing weird germ (like one my husband and I both caught years ago, that prevented us from lifting our arms for a few days). Hm....

Edited by Worried Dad

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