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seekingrelief

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  1. I am sorry you are going through all of this. I understand how frustrating this whole process is. We had to wait over 6 months to get an appointment with Dr B but I am glad we did as it was well worth the wait. Pay out of pocket and make the appointment now. You will be glad you did.
  2. I have wondered about this myself as well. DS10 has had 3 titers drawn since November. All show normal ASO but elevated DNASE (599+). He has been on short courses of antibiotics twice and is now on a month long course of Augmentin. He is definately in a PANDAS flare....And I am wondering how we can get those darn DNASE antibodies down!!! Whenever his DNASE is elevated, his PANDAS behaviors return. Does anyone have any thoughts on what will get the DNASE levels to go down? Sorry if I hijacked your thread....hopefully we can keep this conversation going and both get some answers
  3. Hello, We have our first appointment with Dr. B coming up and was wondering what I should expect from this appointment? Any insight would be great. Thanks in advance!
  4. Hello, My PANDAS son was just referred to Dr Dsa in Pawtucket by his Pedi. Dr Dsa is now in charge of Dr Keislings old department. Has anyone been to the Neurodevelopmental clinic in Pawtucket, RI? I am keeping my fingers crossed that he will be able to help us along the journey!
  5. I am so glad to hear people talking about this. My son also gets "the rash" before a PANDAS episode. IT took us a while to connect the dots (no pun intended lol) and realize this was PANDAS related. He has eczema, but this rash is different...pimply like a heat rash over large amounts of his body. It ALWAYS preceeds a PANDAS episode for us. I am just a little hesitant to try a bleach bath because his skin is so dry as it is. Is there anyone else who has used this as a treatment? What were your results?
  6. Hello, My son was diagnosed with PANDAS by his pedi in the Spring and we are still trying to work things through (ie come up with a treatment protocol etc). For the last few weeks my sons behavior has been getting worse...poor impulse control, constant state of brain fog etc. Tonight when I was applying his eczema cream I noticed a strange rash covering a lot of his body. This rash is not red, it is the same color as his skin and is tiny raised bumps. Almost like goose bumps but in a more inconsistent pattern. Could this be PANDAS related? Thanks for your input!!
  7. Wow....sounds like it is something worth giving a try. My PANDAS son also has allergies/asthma/eczema. How did it taste?
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