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socalmom

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Everything posted by socalmom

  1. You guys are great, I take all that is said right now, and keep it filed away for future reference. Thank you. I haven't got labs yet and I am sure once I do I'll only have more questions............
  2. Does anyone here have experience with their child having wrist/ knee pain and has PANDAS? My son has had this for a year on and off and i can't help wonder if it's related? if so, what does it mean? Thanks.
  3. LaraM, Thanks, I had seen this doc mentioned online somewhere.
  4. LLM, I am awed by your knowledge in this area, as I am so new and overwhelmed! My son had titers done on day 5 of abx @ CHLA on Xmas. ASO: less than 25 AntiDNase B less than 95 Dr. T is asking for them again and it's only been 11 days since they were done. BTW- I still don't even understand these numbers except that i was told not all kids have high titers.
  5. Thanks dcmom, I am dying to get on with it, but don't want to make a wrong move. The thought of waiting 3 weeks takes my breath away......I just need answers.
  6. Mayzoo, I am so sorry for the pain you and your family must feel. My son says similar things to me and it's heart breaking to hear. I am so new to all this and it's still scary for me. I can't stand to see his little head jerk like it does. I can't even find ONE person to meet with me in person as there are NO support groups that I know of in Los Angeles CA.!
  7. Thanks arial, I am VERY confused now, as Dr. T said my son can start blood work as soon as he's done with abx. I just don't understand since my pediatrician said 2 weeks!? Dr. T is respected and known in his field but I wonder why he doesn't think it's an issue to wait and other Dr's do?? Another phone call to make to an already hard to reach Dr. .................great!
  8. HI, I am new here I posted a bit on the PANDAS board. I recently saw pediatrician Dr. Sears in Dana Point Ca and he is a believer in Tumeric in helping kids with PANDAS My son has tics, so I don't think he would do this if he thought it would make things worse. I may be doing this once we get lab work done. just my 2 cents. hope that helps.
  9. My 5 year old son is the energizer bunny as you described and has a very quick to anger temper that seems like an over reaction related to what may have set him off.
  10. Hi, I am new here I feel like you guys are just as helpful as the Dr's I have seen so far. My question: My son is on 250mg of Azith and will be done shortly. How long must I wait to get all his blood work done? I am getting: Mycoplasma, Pneumococcal anti body, aso titers, Anti-DNase B titers, Streptozyme, and a bunch of others. I called Dr. T but he hasn't responded to my question as of yet..... Thank you to all who answer.
  11. I'm in the East Valley, Toluca Lake area. The Dr I saw was a Ramos- Platt. I really hope something good could come from this, I faxed the letter to Dr. T, so we shall see.....
  12. In young children, OCD can be difficult to recognize as the behaviors are rationalized as a phase or quirky behavior. Here is a link to a list OCD in young children http://www.latitudes.org/forums/index.php?showtopic=6153 peglem, thank you, my son has some of these behaviors!!!! i just thought it was his quirky way............I feel sick to my stomach now.
  13. hi bulldog24, I did look into it, but if I'm not mistaken your child must have OCD, and at this time he does not. or..........at least not that I'm aware of.
  14. HI Ifran, I went on the 25 Dec to CHLA and my son had several symptoms one of them being tics, and when he was discharged all they told me was that my son had tics, and was " too pleasant to have PANDAS" I didn't need to stay overnight in a hospital with a freaked out kid to learn my son has tics, i can clearly see this! They talked to me about psychiatric drugs and told me to seek help on an out patient basis with my pediatrician! BUT now it seems the Neurologist has had a change of heart because yesterday i received a hand written letter from her asking to speak with Dr. T and explaining she " could always learn more and is very interested in what he's doing"
  15. thanks fcefxer, I just feel like Dr. T is so far away and my Pediatrician just doesn't really understand why I went clear across the country for help.

    It was Christmas and New Years and this man was truly a saint, and listened to me!

  16. Thank you to all that gave me words of encouragement and a little info. my son was discharged from CHLA with tics!! The neurologist wouldn't even really LOOK at him. too busy scribbling in her notebook and scrutinizing me! I finally took matters into my own hands and forked out big bucks for a Dr in New Jersey who's well known here and elsewhere : Dr Trifiletti. What is so frustrating is the LACK OF GOOD HELP/CARE IN LOS ANGELES! PowPow, yes BH is in los angeles. lila@zadar, My husband is French , I looked at treatment options in France and they look bleak, unlike Italy which is a bit more "informed" A Dr. who refuses to see you w/o good insurance? Imagine that? I am currently looking at these dr's: DR Deborah Lehman @ Cedars Sinai pediatric immunologist and Dr. Pamela Varady clinical Psychologist. Anyone have feed back on a Dr. Schweig in Petaluma? 3boys mom thank you for reminding me that every kid is different, I do get worried and overwhelmed!
  17. Hello, my 5 year old son has been diagnosed with PANDAS and i am not handling the news well to say the least. I am scared and overwhelmed. I think my son has had this since he was 4 or possibly younger. To make matters worse I am in Los angeles CA and there seem to be NO ONE HERE COMPETENT ENOUGH TO TREAT IT! Please forgive my spelling errors or ranting as i haven't slept well in 9 days. Where do i go for support and what Dr. is close by that we can see? why is the west coast, specifically LOS ANGELES such a wasteland when it comes to help for this disease? Will my son ever be normal again? Thank you to any and all who reply to my ranting, I am truly losing my mind.
  18. Hi kthomas, I am new here and I have the exact same question! My ds 5 years old was diagnosed with PANDAS this Xmas and we just started Azith, and I pray his tics subside. I hope someone with more experience can give us feed back on this. I also asked my Dr. and I am waiting for a reply.....
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