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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 hand sanitizer a lot which really is fine by me!... so I don't know how she would be if she did get a full blown sickness. She is now (7 months later) soooooooooooooo much better I'm just afraid of rocking the boat, but also afraid of not taking precautions. Remaining symptoms are only: fear of throwing up, fear of hearing about her friends feeling sick, and fear of eating sugar/junk food. We work on those fears each week, she recognizes the fear and understands it, but it is still hard for her.
  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 should she be on a daily antibiotic? Her doctor does not want to do that because he said it will mess up her "flora"/good bacteria and could mess with her immune system. Any thoughts? pros and cons of just treating? or pros and cons of daily penicillin. Would it make her less resistant to be able to fight things off eventually on her own? So far she is a lot better. Still left with the obsessive part of ocd, but therapy is helpful for her with that.
  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's not "healthy". Either way, it for sure is a trigger to her increase in Panda symptoms.
  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 (therapist apt., an early morning activity, etc.) so that she didn't think she was going/giving in to the ocd. (does that make sense?) I personally think (and this is just my opinion) that if you have him not go because of the teacher then you will have MAJOR problems down the road whenever he is with a bad/stressed out teacher. He might think he should not have to go, when unfortunately is it something all students will probably have to come across sometime, especially in middle school when they have about 7 teachers...most likely one of them will have a non pleasant personality. I wish there were not bad teachers, but there are (just like there are horrible doctors). I would try to set up some kind of plan for him (do the art work at home over the weekend and miss the art class)...or have something else to do that he can do well during the time that he starts to be disruptive. My daughter's art class is always able to draw pictures when they finish early, or is there something he can play with like puddy to keep him occupied better. (an autistic child in my daughter's school used this and it was helpful for my daughter last year when she returned from being homebound due to pandas.
  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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