Jump to content
ACN Latitudes Forums

LEROY girls on the TODAY show this morning!


Recommended Posts

 

Does anyone think that age of onset could have anything to do with the predominate tic presentation? (atlest that we are aware of...whether it be strep, vaccine, or vaccine damage meets strep)......

 

Hmmm, I was wondering if the strain of strep (if it's PANDAS) was a "tic-ky" Pandas strain. Or a new strain of strep that is able to trigger PANDAS in older kids. Or just plain Sydenham's Chorea...

 

I wonder if these girls have any younger siblings and if any of them are having any sort of problems?

Link to comment
Share on other sites

  • Replies 41
  • Created
  • Last Reply

Top Posters In This Topic

Top Posters In This Topic

You heard right, EAmom. 9 months. Double Grrrrr here, too. These docs are trying to do damage control before the fan is turned on HIGH. Dawn

 

And if it is Sydenham's Chorea, many of those cases will spontaneously resolve in several months (at least from what I've read), so these girls COULD get better and then these docs will say "look, we were right, our treatment has worked!".

Edited by EAMom
Link to comment
Share on other sites

Gardasil is also recommended for males as well, starting at age 11, I think. We have boys in the elementary schools who have already been vaccinated with it.

 

What about the menigitis vaccine? That is also an older child vaccine. Does the fact that it is a vaccine related to the brain make it possibly more problematic for certain kids?

 

I'm having trouble finding it again, but I know I remember reading children who have difficulty with the strep pneumoniae vaccine, could also have trouble with the meningitis vaccine. I know the strep pneum vaccine is not the same as a strep A infection, but clearly many of our children's bodies are not producing the protection they were supposed to based on the titers for the 14 serotypes. Also don't know if the vaccine itself is a main culprit in the vulnerability chain, but those failed titers are a common thread among many, many of our kids. And I know I remember reading a link between meningitis and strep pneum vaccine.

Link to comment
Share on other sites

oldest news report see is from Nov 8 - and at that time the tics were in 6 girls, for little over a week. Maybe the primary physician that mentions 9 months was treating the third girl interviewed on the today show - she mentioned that she was getting better by adjusting SSRI's that she was already on. so maybe she has been seeing that doctor for several months - before the tics.

 

I've also read there is a huge chemical plant in the town, already the focus of other health related issues/concerns.

 

I sent the new articles to Cunningham, in November when I first saw them. I soooo hope that they get anti-neuronal tests done, maybe with new nationwide news coverage. Whatever they reveal, could be a clue - if it is purely neurologic then the (chemical plant or "conversion disorder") then there shouldn't be elevated anti-neuronals. If it is immune mediated caused by vaccine , bacterial or viral illness then I'd expect to see most of those girls with high cam K's.

 

Has anyone seen anything about other symptoms? OCD, insomnia/nightmare frequent urination? Anything else basil - ganglia related?

 

What a CANS of worms.

Link to comment
Share on other sites

The doctors in that video didn't really say anything. It was interesting that one said she had been treating a girl for 9 months.

 

In our case, my daughter did initially get better after about 6 weeks with initial treatment with zithro. Then it all started again about 4 months later (severe documented strep in both kids), was remediated with a steroid burst and clindamycin, and then recurred about 4 months after that(post tonsillectomy after stopping abx), when it improved but did not resolve completely with another steroid/clindamycin burst. Then dystonia set in............which only completely resolved during/after plasmapharesis.

Link to comment
Share on other sites

The doctors in that video didn't really say anything. It was interesting that one said she had been treating a girl for 9 months.

 

In our case, my daughter did initially get better after about 6 weeks with initial treatment with zithro. Then it all started again about 4 months later (severe documented strep in both kids), was remediated with a steroid burst and clindamycin, and then recurred about 4 months after that(post tonsillectomy after stopping abx), when it improved but did not resolve completely with another steroid/clindamycin burst. Then dystonia set in............which only completely resolved during/after plasmapharesis.

 

Yes, I can't even figure out if these girls had any sort of throat cultures to check for strep (or blood strep titers, although the problem is PANDAS girls don't tend to get elevated titers, so a false negative is likely). Any info from anyone that talked to the parents?

 

And I would be surpised if they had an echo (to check the heart in case SC), it seems like it would be an easy thing to ask the girls/parents.

Link to comment
Share on other sites

From the Website of The Pediatrics Devlopmental Neuroscience Branch, Division of Intramural Research Programs is within the National Institute of Mental Health

 

PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette's Syndrome, and in whom symptoms worsen following strep. infections such as "Strep throat" and Scarlet Fever.

 

The children usually have dramatic, "overnight" onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones.

 

Tourette sysmptoms and/or OCD can be present in the patient with PANDAS. These 12 girls should try to get in the NIH study on PANDAS, as the NIH is still recruiting NEW patients.

Link to comment
Share on other sites

I think they're too old, study wants 4-12yr olds, again, just to keep the study sample as neat and fitting in the box, as possible, for study purposes. Also, has to be a correlation to strep somehow, either swab, titers etc and maybe these girls don't have that as it may be a different bacterial or viral trigger.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share


×
×
  • Create New...