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Everything posted by jaybam

  1. Sorry to keep asking, just trying to decide on whether to start daily antibiotics. If anyone does not mind answering how long has your child been on antibiotics? Do you use probiotics and what kind? Also, have you had any problems? If we start her doctor wants to test every 3 months to check her system (I think liver??) Do most doctors do this? Also, most importantly, since starting has your child gotten sick or do you find your child has still gotten sick anyways?
  2. We started a tic and it lasted for a week (both of my kids actually had this happen within the last 2 months at different times) BOTH had the tics go away after 3 days of antibiotics.
  3. I wish we would never had started the SSRI, but she was sooooo bad that I was desperate for anything to help and they kept pushing it. I think it was hard on her for a week and most people would probably have stopped then, but I don't really know if it was the PANDAS continuing or if it was the SSRI. She has been on it since April and had one dose increase and the dose increase did seem to help (more). I am probably going to wean her off of it at the start of next summer. I have not allowed her to really get sick yet (treated so quickly) and her ocd fear of getting sick causes her to use han
  4. Background: dd had "THE" episode early this year. The REALLY bad one that changed her entire life. Went about 3 weeks with no one knowing what to do then finally a PANDAS diagnosis. Started antibiotics for a normal course and an ssri. Still on SSRI and no antibiotics, only have given when she experiences a minor symptom (just a few sniffles has gotten her antibiotics because I don't want to take a chance). So she has been on antibiotics (5 day azitromyicin.) 4 times since March as a "just in case" because symptoms looked like it could go somewhere. Do you this will continue to work or sh
  5. hmmmm? now this is interesting....i have never heard of anything bad about vitamin d...but, my non pandas son was taking it for about 5 months and started a throat clearing tic about 1 month into it....then the last 3 weeks he stopped taking it (we ran out) and he started the eye blinking? He has no history of tics, but I was thinking it was because he was sick and maybe he is on the road to pandas if not caught early???????
  6. Hi. Just curious...am I correct in understanding that Saving Sammy did not have ivig or pex? Are there any more updates from how he is doing now? Did he get better and stay better?
  7. My daughter also tested low in IgM...please PM me if you can if you find anything out...she tested this summer and both of her doctors said it was nothing...but, I have never been able to believe that. She is still dealing with lingering ocd...throat and gut issues as well.
  8. I like the money idea...but, I agree...my ocd daughter would never eat if I had her read labels....but, normal kids...yes, that would be great. The video does seem to mention that all pandas kids would react to sugar...but, I doubt it's the case. However, for my daughter it is not hard at all to see the connection....I just still wonder if it's part of her ocd fears. Prior to pandas i would talk about eating healthy to stay healthy...i never wanted to ever bring up anything about weight or fat...just stressed healthy....so part of me thinks it could be that she is fearful of sugar b/c it
  9. I agree with this for us....this is exactly the same for my daughter.....prior to pandas she could eat a ton of sugar w/ no problems....but, since it all started she has had her WORST return of pandas symptoms if she eats a lot of sugar...I have wondered if it was a type of ocd fear of sugar or if it was actually the sugar. She eats dark chocolate and little bits of sugar....but, I won't let her eat a ton of candy anymore. I am really nervous about Halloween...I am going to have to really limit her and it's going to be sad for her.
  10. Hi...I'm sure this is not at all an issue for you, but wanted to just throw it out there. My daughter used to love art, but after the strep and severe pandas episode we are now left with ocd. Her ocd is a fear of swallowing chemicals and things like glue and paint. Art class is her hardest and most stressful thing to do now and she seriously used to love it. Just wanted to throw that out there, but I think our situation is more unique. If I were a stay at home mom I for sure would keep her home from it b/c it's not a big deal, but honestly I would schedule something else during that time
  11. I have read that some people don't see progress from PANDAS until they start treating Lyme. Don't both treat with antibiotics? what is the difference between the treatments. If someone had Lyme for a long time how could they test negative for it?
  12. I would love to see any replies to your question. I am also wondering what to do and amoxicillin does not work with my daughter. Good Luck
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