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Dr. T's latest


oivay

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A lot of these girls have seizures, and stuttering, not a common symptom of pandas and for all the girls not to OCD, kind of strange, u would think some would. Not sure what ur point is Fix it! Why are u so defensive and accusational. No one ever said that tics only cannot be pandas. These girls are suffering and I in have no agenda to force a pandas diagnosis on them. They may have something more complex and serious, they could have been exposed to neurotoxins. Jusy wanted to say I agree with Dr T saying that this is not "typical" pandas.

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I'm sure that i am defensive. Just used to having to fight the battle, up hill, both ways. I want to make sure that i and others can say "what about my kid..it's a little differnt than what your's looks like, but that doesn't make it not so"

And i agree, that doc t's second theory sounds more plausible than the other dr's theory. I'm a Doc T fan!!!

It's terrible what they are going through and that they are being dismissed with form of pyschosis. It is terrible and a crime.

 

For me, the only thing that is not typicalin this case is the late age and the cluster.

Maybe my kids fit doc t's new theory too, but with 4 different drs giving them pandas dx(i wonder if we are delisted now with the new paper out)

 

I'm asuuming this may be part of Dr t's theory i think all panda docs a have to be vvvvveeeerrrrryyyyy careful going forward. Again the white paper, so much publicity coming fast and furious, and people wanting answers yesterday.

 

 

I'm glad you brought up your observations so we can discuss it. I did not mean to sound accusational.

 

Also,I thought stuttering was a very common presentation in SOT

 

I still feel like we need to keep a wide scope on what the triggers are and how it can present(new name should be Infectious Neurological Disorder IND) or something like it and not get wrapped in the exact infecious trigger. If something out of the norm happens to your kid...don't stop looking for the anwser.

 

You are very right, it could still be do to something released in the enviroment.

Edited by Fixit
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for what it is worth (probably nothing) my girls' all have had stuttering during their exacerbations. (never stuttered a word before!)

 

yeah...I think stuttering can be a tic

 

My dd repeated words during one of her exacerbations. A dr. doing eye tests on her at the time noticed and said it could be a tic. She didn't do it on previous visits b-4 the exacerbation.

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I'm just chiming in to say that my daughter also had a brief episode of stuttering....lasted about a week (when both kids were very sick) and went away when we doubled the zithromax dose. She never really had any OCD. Almost all tics/chorea.

 

Also, she plays softball. I have to say that when I saw all those videos online and noticed how many of those kids were playing softball, it really gave me pause.

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for what it is worth (probably nothing) my girls' all have had stuttering during their exacerbations. (never stuttered a word before!)

 

yeah...I think stuttering can be a tic

 

My dd repeated words during one of her exacerbations. A dr. doing eye tests on her at the time noticed and said it could be a tic. She didn't do it on previous visits b-4 the exacerbation.

 

I'm not sure but i think it can be brain fog too.

Ds 4 had recent bout, maybe more of a stammer??? repeating the first part of the sentence, couldn't complete his thought and was stuck. We treated him for yeast and it stopped.

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I'm just chiming in to say that my daughter also had a brief episode of stuttering....lasted about a week (when both kids were very sick) and went away when we doubled the zithromax dose. She never really had any OCD. Almost all tics/chorea.

 

Also, she plays softball. I have to say that when I saw all those videos online and noticed how many of those kids were playing softball, it really gave me pause.

 

That girl Ruby (teen-not Le Roy) from NYC is also a patient of DR. T.'s. She presented a lot like the Le Roy girls. She was under control with abs/IVIG, but then relapsed recently with a viral infection (Mono, or something like that).

 

I don't believe she had OCD either, but did (in her most recent video) mention altered taste sensation. That's a symptom my dd had shortly after IVIG #1. Also, Diana Pohlman's son had that as a PANDAS symptom. Here's Ruby's 2nd video.

 

It makes me wonder if the Dent only girls who are getting better are going to relapse the next time they get a viral infection.

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"It makes me wonder if the Dent only girls who are getting better are going to relapse the next time they get a viral infection."

 

 

I'd bet money on it. In our case, we could guarantee that when she got even a low grade fever (99.5 or higher), the ticking started again.

Oddly, she never got fevers with strep. (GP pointed this out to me.)

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"It makes me wonder if the Dent only girls who are getting better are going to relapse the next time they get a viral infection."

 

 

I'd bet money on it. In our case, we could guarantee that when she got even a low grade fever (99.5 or higher), the ticking started again.

Oddly, she never got fevers with strep. (GP pointed this out to me.)

 

 

Yep...I would also bet money on it.

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Yes there are symptoms that are typical and are documented. Seizures and stuttering are not typical, sorry guys, they r not common for pandas. If they were swedo would have it on her list of symptoms. Who is to say that they correlate with pandas or they are a symptom of something else. A child may have them but they are not red flags for pandas. I will give a personal example; Some children with pandas have a high ANA.(2650 plus) However some people just have high ana's for no reason, with or without pandas.(Parvo virus can do this according to Murphy.) My dd has an extremely high ANA, is it correlated to pandas, I think SO, yes, but in all honesty I could be wrong. Dr T would say it does correlate with Pandas, but swedo would say not a symptom. Sometimes, everywhere I look I see pandas, if I want to, but clearly not every child with ocd, and tics has pandas. (They could have lupus, hashimotos, or head trauma,adem, a brain tumor, lymes disease.......) But I am sure that I may think they do cuz its all we know and what we see everyday. So back to my original post, these girls do not have severe sudden onset ocd, almost no boys have gotten this which statistically is strange for pandas,swedo said we should see 40 boys with this if it was a viralent strain of strep. The medical community is missing something, and I hope they continue to push for answers because it may help many if they can figure this out. But at this point to call it pandas plays right into the hands of the naysayers docs who cannot wait to show that pandas is not a legimate disease.

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Hi - our ds4 had 3 weeks of stuttering that was stopped dead with zithromax. It didn't appear to be OCD related or brain fog but a real stammer where he'd get stuck on the hard consonants at the beginning of words.

 

Although, I know it's not on Swedo's list, according to Dr T it is seen fairly often in PANDAS patients, and he's seen a fair few in his time.

 

It appears that stuttering (and from what I believe this is a commonly touted theory in the stuttering world too) can be caused by too much dopamine which would make it something that you wouldn't be surprised to see in a PANDAS child due to the dpoamine dysregulation.

 

I'm not saying it's PANDAS mind you, just feel that stuttering can be part of the wide constellation of symptoms that can be seen with these infection triggered kids.

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nevergiveup- I have to disagree. No one is a bigger Swedo fan than I, but what is written in a formal scientific paper, I am sure, does not include her complete observation. The list of symptoms in the white paper, IMHO, is excellent, however I am sure it is not an exhaustive list of the lesser or less common symptoms she has seen with pandas. (It does seem to be less clear for primarily/only ticcers).

 

My daughter also had stuttering, btw. Came with one very bad exacerbation, left within 2 mos after treatment- never seen again. She also had altered taste issues with exacerbation.

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The brain is affected by pandas, I am sure there are so many symptoms that could show up. I am just saying that the leroy symptoms are similiar within their group, but not similiar within our group. But if u took 12 pandas kids randomly would u have these symptoms? No they would have many different symptoms but the common symptoms that arise among the group would be ocd, chorea, bedwetting, separation anxiety, tics and sudden onset, some may have seisures and stuttering.(Maybe 1 out of 12) But it would be more boys than girls and not a lot woud have stuttering and seizures. It maybe infectious triggered and very concerning, but it is not "pandas". If it is then swedo has the disease all wrong, and we have lost our ability to diagnose this disease once again, the major concern of singer and gilbert and many neurologist whom are looking for ways to identify our children so they can treat.

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nevergiveup

 

you are right, this could not be PANDAS by definition- the patients are all too old.

 

I am not invested in or confident this IS PANDAS/ PANS/ CANS/ SOT, but if it were, we may not completely understand the presentation as the LeRoy cluster are older.

 

I have been very concerned from the beginning about PANDAS being connected w/ this cluster publicly because PANDAS is in such a weak, yet hopeful position in the medical community now. How it has gone, I am happy with- Dr T has managed to get the word and facts on the national stage in a cautious, conservative way.

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nevergiveup

 

you are right, this could not be PANDAS by definition- the patients are all too old.

 

I am not invested in or confident this IS PANDAS/ PANS/ CANS/ SOT, but if it were, we may not completely understand the presentation as the LeRoy cluster are older.

 

I have been very concerned from the beginning about PANDAS being connected w/ this cluster publicly because PANDAS is in such a weak, yet hopeful position in the medical community now. How it has gone, I am happy with- Dr T has managed to get the word and facts on the national stage in a cautious, conservative way.

 

Too bad we can't test for anti-basal gangila antibodies.

 

Then we could diagnose/name on the basis of that: "neuropsychiatric symptoms associated with anti-basal gangila antibodies" or "acute onset neuropsychiatric symptoms associated with anti-basal ganglia antibodies"...so none of this garbage about having to "prove" correlation with a strep infection (cause titers are so unreliable, and these docs don't have their radars on to culture at onset of symptoms) or worry about a patient being "too old for PANDAS".

 

Swedo even admitted that Prepubertal onset was an arbitrary criteria... "This criterion was an arbitrary one chosen because post-streptococcal reactions are rare after age 12, but could occur in individuals who do not have protective immunity." (per the Batavian interview)

 

Who's to say what could happen with the "perfect storm"...virulant strep plus mycoplasma? And maybe these symptoms ARE typical PANDAS symptoms--for this strain of strep plus mycoplasma in this age group?

Edited by EAMom
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