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mom md

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  1. Sounds very familiar. My son had titers of 1800 and many of the symptoms you have stated above at age 8. . We saw Latimer in 2009. She recommended plasmaphoresis due to his extreme presentation and the high titers. We were back to baseline after 5 days of plasmaphoresis and I thought we left cured. Four months later he relapsed (not as severe) after a flu shot, and ultimately needed some IVIG to retrain his immune system. We too, had not had a positive strep test since 2006. For us it was clearly autoimmune. Both azithromycin and steroids worked for us to buy some time until we could
  2. Progesterone can affect psychiatric disorder such as depression so I would think Implanon would not be good. It is easy to get taken out though. Once removed the effect of the implant should be gone quickly.
  3. Yes. Have three. First son-diagnosed in 2009. Very bad case requiring PEX and then IVIG. Now he is in 5th grade and doing great. To hear the story of where we came from you would not believe it was the same child. He is sweet, sleeps like a baby, no tics, no movements, patient, kind, focused. Unbelievable. My second child had responded to antibiotics and IVIG and is now doing well. We have not had any issues this school year. My third child was diagnosed this fall. She has responded to antibiotics alone but I will do IVIG without hesitation if needed. It has brought my other two chil
  4. I have two children that have both received IVIG probably 6 times each. I asked their infectious disease doctor what she thought-if I should be worried. She said it is riskier for them to get steroids for poison ivy than to get IVIG. She said it is safe it is just risky to the wallet:)
  5. My daughter was diagnosed about two months ago. She is 6 and we caught it early. She was started in Omnicef and her symptoms started improving after 7 days. We were given a three month prescription. About 3-4 weeks in we saw Dr. L. She suggested trying a one month steroid course to see if we could "erase" the immune system memory since we caught it so early. Interesting idea and our immunologist thought it was also worth a try. She finished the steroids two weeks ago and she now has no symptoms. We saw a pediatric infectious disease doctor and she said to keep her on the omnicef for th
  6. I emailed Dr. Grant tonight to see if she would even be considered since she has already had steroids and antibiotics. She has also met with a child psychologist twice to talk to see if she had it and to see if she can start verbalizing her "rules. Don't know if that is considered behavioral therapy since it really hasn't done anything yet. I will see what he says. I really hate to subject her to the spinal tap,travel, etc when we can get IVIG locally but I feel like anything to further the cause. I will see what he says.
  7. It is always great to read the success stories. Thanks for sharing.
  8. Thanks for the thoughts. We did start the steroids and I knew from experience her behavior could get worse with the steroid I just did not expect the OCD to get get worse. I have always done what you said- if it is working stay the course. Strep is everywhere down here and it makes me really nervous to change her antibiotic, especially while on a steroid. I am going to go back on the cephalosporin and alert Dr. L. Thanks again.
  9. My daughter 6, is a classic presentation. Four weeks ago she had sudden onset separation anxiety, OCD, a tic, and then strep confirmed by her pediatrician. Placed on a cephalosporin and symptoms decreased almost 80% by 7 days. We flew to see Dr. L after she had been on the antibiotic for three weeks and at that point her symptoms had decreased down to 10%. She once again confirmed the diagnosis and recommended a month of steroids to see if we could "erase" the memory of the immune system and also placed her on clindamycin for a month to kill staph. She said a lot of kids get infected with
  10. My son was 8 and I explained to him that when we are sick your body makes soldiers to fight infection. Your soldiers have just gotten confused and are trying to attack your brain and that is why it is making you do these things. He looked at me with such relief and said, "wow, that is great. I just thought I was a bad kid.". I then explained that all the doctor's visits, medications, etc were just to fix the soldiers and to help his body not make so many. Even his friends who take ADHD Meds when they come over say "oh yeah, His meds are for his soldiers". Pretty basic, but it worked.
  11. ###### hath no fury like a PANDAS parent. If BCH had any idea they would retreat now.
  12. Took her in today and sure enough strep test was positive. She was shocked. I burst into tears. I knew it was coming but the conformation was just too much. I just told her, it was not that I did not know what to do but that the whole path is such a struggle. My daughter has no strep symptoms except OCD off the charts. Our pediatrician was great and gave everyone a cephalosporin for 10 days just in case the boys were exposed. I was able to get an appointment with Latimer early October just to get the "stamp" of approval for diagnostic purposes because the doctors here are good but st
  13. I will give you the cliff note version. My older two sons have both been diagnosed with PANDAS and have been through the ringer. PEX and IVIG for one and IVIG for the second. Interesting though, their disease presented more with hyperactivity, sleep disturbances, mood swings, tics, and sleep disturbances. They are both doing well now. My oldest has not had symptoms in two years (he was very severe) and my 8 year old is finally almost back to baseline (he was caught much earlier). My daughter, 6, started kindergarden and right around the beginning of school I noticed some anxiety and a h
  14. My sister in law just returned from there and had nothing but positive reviews. She said the nurse was wonderful and her son tried to pull his IV out for two days and screamed, cried, bit, etc and she never lost her cool. Very professional and sweet to him the whole time. He was so disruptive Dr. Latimer was in there a lot and was hands on the whole time.
  15. I have a new appointment with Dr. Latimer in Bethesda at 2pm tomorrow that I forgot to cancel and the office was closed for the day when I realized it. I feel awful. I called and left a message but they may try to fill the spot in the morning. Just wanted to put it out there if anyone is close and might be able to call in the morning and fill the spot.
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