cab40

Hello Can you remind me, what does this test show??

Hello, Wondering if this test was worth it?

Hello, Love to hear about any protocols for these.

Hello, Can one time IVIG like Dr K's protocal work for a child that also has immune deficiency?

Success stories?

Hello, I really want to know from those of you out there both familiar with Dr K's protocal, used him or something like it What protocal should be done; can the one time high dose help them or do they need frequent infusions, what has been your experiences. thank you so very much.

found it!

Thank you..

Hi, Thanks all!

What ABX was or is he on??

thank you!

Anyone know about Coram Labs where they are?

Foudn info on Rapp no longer in same location...

Does anyone know if Dr Doris Rapp is still practicing anywhere??

Dr. Doris Rapp?

When this forum began, I was struck by the similarities between the symptoms people described for PANDAS and what I knew about autism from many years already involved with that community. When PANDAS was discovered in my daughter, I sought to understand what exactly PANDAS was doing to her brain. The info I was getting, while not conclusive (but the opinion of Dr.s Cunningham and Latimer, as related to our pediatrician), was that the antibodies were causing false signaling in the basal ganglia, but not destroying tissue. Then, looking, in hindsight, at my daughter's abnormal development (she was my 4th child and I've taken courses in early childhood development, so know what should have happened), it just makes sense that the pathways and connections she was making were grossly affected. She was not treated until she was over 10yrs old- very little normal development occurred- so baseline is still pretty wanky behaviorwise- I think that's because she doesn't have the pathways laid down to revert back to. I think (just my opinion) that if you get it later, you'll still have to deal with whatever erroneous pathways and connections have been made during an episode (like residual OCD), but the older pathways are still there and can be accessed and restrengthened. Also, if you look at the function of the basal ganglia- sensory signals coming from the body go through it to the brain and the basal ganglia fine-tunes or modulates the signals going back out to the body to act upon the incoming info. So, you can see how false signaling in either or both directions could really mess things up. Just take handwriting for instance, the visual signal goes through the basal ganglia (as well as the touch sensation of fingers on pencil/paper)and the signal from the brain responds with instructions of how far and what direction to move the pencil, how tightly to hold the pencil, etc. The basal ganglia simultaneously compares the incoming and outgoing signals and adjusts the outgoing signal to match the incoming. See how this could mess up a child's handwriting during a PANDAS episode? But, what happens when the child tries to learn to write during a PANDAS episode? My guess is the brain lays down some pretty bizarre learning/memory pathways. When the episode is over- the child with previously normal pathways, has those to go back to. But the child with only the bizarro pathways has nothing to go back to.

When this forum began, I was struck by the similarities between the symptoms people described for PANDAS and what I knew about autism from many years already involved with that community. When PANDAS was discovered in my daughter, I sought to understand what exactly PANDAS was doing to her brain. The info I was getting, while not conclusive (but the opinion of Dr.s Cunningham and Latimer, as related to our pediatrician), was that the antibodies were causing false signaling in the basal ganglia, but not destroying tissue. Then, looking, in hindsight, at my daughter's abnormal development (she was my 4th child and I've taken courses in early childhood development, so know what should have happened), it just makes sense that the pathways and connections she was making were grossly affected. She was not treated until she was over 10yrs old- very little normal development occurred- so baseline is still pretty wanky behaviorwise- I think that's because she doesn't have the pathways laid down to revert back to. I think (just my opinion) that if you get it later, you'll still have to deal with whatever erroneous pathways and connections have been made during an episode (like residual OCD), but the older pathways are still there and can be accessed and restrengthened. Also, if you look at the function of the basal ganglia- sensory signals coming from the body go through it to the brain and the basal ganglia fine-tunes or modulates the signals going back out to the body to act upon the incoming info. So, you can see how false signaling in either or both directions could really mess things up. Just take handwriting for instance, the visual signal goes through the basal ganglia (as well as the touch sensation of fingers on pencil/paper)and the signal from the brain responds with instructions of how far and what direction to move the pencil, how tightly to hold the pencil, etc. The basal ganglia simultaneously compares the incoming and outgoing signals and adjusts the outgoing signal to match the incoming. See how this could mess up a child's handwriting during a PANDAS episode? But, what happens when the child tries to learn to write during a PANDAS episode? My guess is the brain lays down some pretty bizarre learning/memory pathways. When the episode is over- the child with previously normal pathways, has those to go back to. But the child with only the bizarro pathways has nothing to go back to.

Hi everyone is a debie downer sometimes!

I think I know what you are getting at..... There are just too many unknowns right now as to how the pieces to the neuro-psych-cognitive-motor/tic picture fits together.....like trying to figure out a puzzle with only 25% of the pieces connected. I am an SLP. Of the 60 kids on my caseload, 20 of them are officially diagnosed with an ASD. 7 years ago, it may have been 4 kids for the same district/schools. Lots of reasons for that spike, not one single reason. Those 20 kids' function ranges from gifted and accelerated programing to MR/life skills.....they are all over the map, but usually very high or very low....not as much average. All of this is my opinion/observations/speculation: I would say of those 20 kids, 7 CLEARLY exhibit marked decrease in their specific level of functioning when sick or recently sick in the past. I'm not usually given the specifics about "what type of sick", but these 7 kids get way worse with the social and communication pieces. Most notably (and hardest to "therapy through") they become internally preoccupied and it is very difficult for them to be present, in the moment, with us.....regardless of the activity. I can also see increases in tics, self-stim behaviors, echolalia and stuttering. I would say there is another large portion of the 20, another 8 who are very consistent in the presentation of their symptoms. Now that I think about it....those students do not seem to get sick much, hmmm. I'll have to look up their attend recds. The remaining students are ones I would have difficulty saying one way or another because their parents are trying different psych meds, so who knows what is changing what. Another question for researchers to determine....the relationship between age of onset, timeliness of treatment (medical and therapuetic) and presentation of symptom set. I remember Dr. K telling me symptom set depended where/when development was interrupted. I think those of you with children with ASDs need to do every available therapy to minimize the impact of "interruption of development." Hit the brain-attacking beast from every possible angle {including prayer if you are faithful.} But the answer, cure, healing, whatever, will come from medicine.

Dear P, What therapy are you referring to? I would like to hear about it...

Arial95, what PANDAS treatments did you do?