Cleopatra got a reaction from bobh in Tics only PANDAS
My dd was on a weekly 500mg azith prophy protocol for awhile.
When my dd had HORRIBLE tics (vocal, sniffing, throwing head back, blinking, etc.) 10,000x/day we swabbed her nose and found MRSA. Treated it with Bactrim and it vanished within 36 hours. Has come back with flares, but is finally under control (99.99% gone) after 5 years of ALL the available treatments.
Cleopatra reacted to EAMom in Dr. Murphy or Dr. Latimer
I've heard Murphy is mainly good for diagnosis, not so stellar for treatment.
You have 2 leading PANDAS physicians in Texas. I would not recommend travelling to the East Coast in your case.
Here's a provider list (by state) from Pandas Network
Dr. Sesgagiri Rao (Leading PANDAS Physician)
will treat more complicated cases involving PANDAS and Autism
Dr. Bruce Russell (Leading PANDAS Physician)
Port Aransas, TX
May not be accepting new patients.
Will treat more complicated cases involving PANDAS and Autism
Cleopatra got a reaction from NancyD in Would IVIG skew Anti-Strep O & Anti-DNase B titers?
Any MD will tell you that it takes 3-6 months post IVIg for titers to be accurate. The IVIg definitely skews the results. It's supposed to.
Cleopatra reacted to Sheila in Why Tourette Syndrome Assoc Needs to be Investigated
Chances are, if you were satisfied with the treatment options that are available for Tourette syndrome and other tic disorders, you wouldn't be on this forum. So many families like you need help finding better therapies than the drugs that are offered. We've written a series of articles calling for an investigation of the Tourette Syndrome Association because for the last 40 years they have ignored information on safer, new directions for treatment while at the same time having a virtual monopoly on information provided to the media. Don't believe me? Click the links below and follow this effort. A 10 PART SERIES ONE Making our case – The first in a series of articles
TWO Looking back 40 years
THREE There’s a lack of research studies reflecting positive reports received
FOUR Dr. Marshall Mandell’s amazing discovery was ignored by the TSA
FIVE The TSA ignored the work of Doris Rapp, MD
SIX The TSA medical board ignored the findings of the Alternative Therapy Network for Tourette syndrome even while TSA staff referred families to it and success stories with natural treatments were mutually shared.
SEVEN The TSA and our organization had a liaison relationship for a few years . . . yet they sought to stifle our message and discourage people from trying natural approaches.
EIGHT The TSA has failed to alert the public and medical community that environmental triggers can worsen Tourette syndrome symptoms. Their negligence is indefensible.
NINE The TSA has censored and controlled the media message, making it difficult for families and physicians to learn of integrative and natural approaches to Tourette syndrome.
TEN This is the final article in a series that has documented the Tourette Syndrome Association’s (TSA) failure to determine the cause of Tourette syndrome and find safe, effective treatments for symptoms.
Please support this very important effort. We need to make sure research goes in the right direction and families learn about better options for treatment. Thank you, Sheila
Cleopatra reacted to Cleopatra in warning:vent! Horrified by school!
"I am also not looking for a one on one aide. That would be an awful thing to make the child dependent on another person. I am simply asking for a an aide to placed in the classroom to help the teacher. How can she be expect to teach my child or any other child if my child is on the floor 20 times in a 45 minute period."
Joybop ~ My dd's Special Ed atty. was free because it was based on income and since I can't work due to dd's PANDAS, I qualified easily. She missed all of 2nd grade last year due to her disorder. Made it to 1st day of school and that was the end of it. She couldn't be tutored until February, even though her HHB began in December, because she was debilitated by her disorder. She was passed through from 1st to 3rd grade without ANY assessments or evals by the school. After treatment, I got her on dual enrollment in April, just to try to transition back to school (physically get her in the building due to her extreme anxiety). That took 6 weeks and failed miserably. The reason was, and I was able to see it during that 6 week process of pain, that it wasn't anxiety causing the problem. It was the cognitive deficits and executive function issues that were overwhelming dd resulting in anxiety, increased OCD and tics! Thank god I went with her and sat through those classes (not that she would let me leave her!) and saw that something else was going on. I got her a neuropsych evaluation which revealed all her issues in incredible detail including a 59 point drop in IQ from 160 to 101! (*yes, all children drop in IQ level when testing is done at an early age, but, even if 30 points is average, another 30 is EXTREME!). The school accepted this eval and it finally got them to sit up and take notice. This along with the special ed atty got my dd into a pre-trial conference and a got her a para 3 days later.
Joybop ~ the reason I copied your comment at the top of my post was to respond and say that you are incorrectly assuming that having a one on one para would MAKE a child be dependent on them. On the contrary, without a para my dd couldn't function in school at all. She couldn't get past the first 15 minutes each day if she didn't have the para to unpack her bookbag, turn in her homework, put her bag on a hook, get out today's books, copy the posted work from the whiteboard into her weekly planner, etc. and organize her. Her short term memory is shot, so, she can't remember simple instructions and can't be given more than one at a time. Of your ds takes 1/2 hour to get packed at the end of every day and ends up on the floor 20x a day, then, I would strongly suggest getting a neuropsych eval and a dedicated para to support your child's needs. My dd is the only child out of 800 in her school with a para, and yes, it's not what anybody wants for their child, but, may be what they need. Her para does her best to foster independence while constantly being available to my dd.
Jferinga~ my dd is currently being assessed for an FBA in order to determine need for service and I just don't get it at all. I don't see how a behavioral plan can help with medically driven cognitive deficits and behaviors. My atty just kept agreeing that they have to do this. There's nothing they can come up with that will fit my dd's situation. It seems like the SChool District is on autopilot here regardless of what is known about dd's PANDAS disorder.