Jump to content
ACN Latitudes Forums

Recommended Posts

raven and dove -- have you checked out pandasnetwork.org. as stated, 'This illness covers several areas of medicine: Psychiatry, Neurology, Immunology, Pediatrics, Infectious Disease and Rheumatology'

 

we do not see dr k, but i believe he is a pediatrician, not a neurologist -- some of his patients can chime in .

 

interestingly, my dh and i were just talking today about a conversation i had here once with dr t that i was disappointed that when symptoms present, everyone thinks psych and no one goes the neurology route. dr t told me their certification board is actually the American Board of Psychiatry and Neurology. in our experience, the practical care is not so intertwined.

 

someone more eloquent than me can explain, but it's that the brain function and the nervous system drive the behavior that is seen as symptoms. that function is impaired due to the autoimmunity -- so it's all a complicated web.

Link to post
Share on other sites

We started with. "PANDAS" neurologist and she confirmed the diagnosis and added sydenham's cohrea. I felt that a neuro. was a good place to start, so they could rule out any other thing (like a brain tumor) or any other brain thing that may have been missed. Once we understood that we were dealing with an autoimune illness, we decided to find an imunologist that deals with PANDAS.....unfortunatly, no help here in Texas. (at least not 2 years ago).

 

FYI....if you search old posts you will find MANY of our children diagnosed incorrectly because PANDAS was not known enough to suggest. So, bi-polar, toretts, many other things, BUT Aspergers, PDD-NOS, & autism in general are one of the bigger diagnosis to throw this under. Our son was diagnosed Aspergers, but with treatment for PANDAS, no longer has any characteristics.

Link to post
Share on other sites

dont wait untill April I read somewhere that if not treated correctly the brain can get use to the bad behavior as normal and even after cured with meds the brain will have a residual pattern of doing the behavior. For us teh severe symtoms started 7 weeks ago and I have been one pain in the behind for all dr.s involved from pediatrics to infections diseases to now neurologist. They receive constant emails from me and I wont stop untill I my son is better. and I was told April for one specialist too or the most commen answer I guess it not taking new patients. I just finally got a name of a dr I hope to GOD will see us will know on MOnday.

Link to post
Share on other sites

well, your kids sound like 2 of my girls. had some occasional tics previously, etc....then the explosion. we are still riding the train, not taking the step for ivig until there is clear evidence it will be worth it. I know some will disagree with that decision, but having heard of about as many that have NOT been helped by it as have, it's a crapshoot at best, and there certainly are risks to it. There have been kids how appear to be slam-dunk PANDAS who have NOT benefitted whatsoever from ivig. I think it's great that your daughter had improvement on abx, and I, too, would keep her on them, and also get your other child on them. EVEN if you do get in to a pandas specialist STAT, you will be faced with the basic decisions of whether you feel your child is severe enough (that is debatable amongst us parents vs. the doctors) and if you would even do ivig, or steroids. other than that, there are many rabbit-trails to go down from supplements, to holisitic, to homeopathy, to the Lyme route.....all I am saying is that I agree, April stinks. We had to wait 4 months for our first appt. But that was our only option with a pandas specialist.

 

I am curious about the statements made by the doctors: "we were to put her back in school for her own good (we currently homeschool)." Why would public school be "for her own good?" We, too, homeschool, and I read an article by Leckman et. al, last year suggesting this same thing for kids with tics. That they do better in public school because they are more engaged and have to learn to control their tics more than when they are in the comfort of their own home. Also, you said the other doctor "didn't seem worried about the damaging effects of homeschooling"---again, what are the "damaging effects" of homeschooling?

Link to post
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
×
×
  • Create New...