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Everything posted by marylandmom

  1. We had a smooth surgery and a long three week recovery. More pain and discomfort than PANDAS stuff. About 6 weeks after T/A we had an issue flare up out of no where, trichtillomania. Have done a lot of CBT, increased some meds, did some steroid burst ( cut that short, it was making it worse!) since the T/A 11 months ago. We started noticing a marked improvement around month 4. I am SO glad we did it. She has gained 15 lbs! in a year. ( and grew three inches) Jumped 25% in her growth/weight chart. That alone is a sign to us that she is feeling better. Sure we have our ups and downs but I never regret taking them out. They needed to go.
  2. If you have a suggestion for a yogurt with a good amount of probiotic( there are SO many different names of the probiotics, I would love advice on how to decide) that a PICKY 9 year old will eat please pass it on. She takes zithromax once a week.
  3. Hi, anyone had success with the zithromax, prophylatically, that is administered twice a day but only once a week? Not sure the dosage. I pick it up tomorrow.
  4. We have a dd9, diagnosed with Pandas at age 8. Have a great pediatrician and we are meeting to discuss the topic of penicillan prophylaxis next week. Questions for anyone who has used it ( or decided not to, I would like to know why): 1)What dosage was your child on ( and how much did he/she weigh? My dd is around 55 lbs) 2) What have been your results? Was it worthwhile? 3) Did you think the, potential, long term effects of a long term antibiotic outweighed the PANDAS issues? Thanks so much. I do not know enough to have an opinion at this point. My daughter does very well on Omnicef.
  5. Hi, Question----Ozimum, when do you "restrict" these foods? When you are, actively, on the antibiotics or when you think you are having a yeast flare up ( craving the carbs, ragey, etc)?
  6. Hi, DD9 weighs 60 lbs. In the vitamin store looking for pro biotics ( Dr L showed us some tiny little ball ones she could swallow but I forgot to ask the dosage) today. How much do I give her?
  7. Charting has been a huge help for us. In fact, it helped us decide that steroids were doing more harm than good. I know they have been great for some kids( wonderful) but they were not for us. If I had not been charting I do not think I would have seen it so clearly.
  8. I am interested in this N-Acetylcysteine. I have a daughter who is 8 and weighs 59 lbs. Does anyone know how much to give her?
  9. Wilma, WOW, this is some news! Though I am sorry to hear about the Bartonella in your daughter I am, too, happy you have some sort of direction as to what you are after. I think you see Dr L. She did the "western blot" for my dd. Did you do Igenex on your own? How long did it take for the results?
  10. Thank you for your reply. It has been a LONG day and it is nice to hear from someone who ( really) understands what we go through with these kids and trying to figure out what is best.
  11. The taper seems to be making the hair pulling WAY worse. We are at day 10 and moved down to 20 mg a few days ago. Dr L did not return my call prior to leaving for vacation so spoke with our ped. We are going to start to end it early. By the time we are done it will be about 17 days of prednisone, not the 30. When I look at my "chart" I keep of emotions/ocd/ etc is seems this has caused a major flare. I hope we get some benefit out of the time we did do. We ARE keeping her on the omnicef for another 20 days. Good thing since her younger sister tested positive ( thanks neighbor kids) today.
  12. And by "bad day" I meant she was really irritable and a roller coaster of emotions. No mania or OCD present. Just terribly moody and set off by everything and anything. Please tell me this will be worth it.
  13. DD8 just started first Prednisone taper via Dr L. in addition to 30 days of omnicef. We did 7 days at 30 mg and just dipped to 20 mg today for next week. Today was AWFUL . Has anyone had this experience? I figured the first couple of days would be rough ( day 3 was not great ) but why this reaction a week into it?
  14. Peglem and Dabel, I would love to know your experiences. It is SO pricey to begin with that I have not gotten far in my research. Please feel free to PM me, I would appreciate it.
  15. They are a supplement/vitamin based co. Anyone have experience?
  16. hmmmm, since she got a T &A back in Dec. and had been doing so well AND , most recently, 10 days into omnicef, STREP did not cross my mind. I wonder.......... I am sure my ped will think I am crazy( as if she does not already). Anyone have and "other symptoms" of strep I should be looking for? No fever and no complaining of sore throat. Just miserable demeanor and headaches
  17. Hi our daughter has had some bad heachaches in the past few days. She has been saying they are right at the front of her forehead. To compound matter, she fell on her face/head at school on Friday. They called and I ( happened to be going there anyway) checked on her and she seemed fine. We have been on Omnicef for over a week for , what we thought was, a sinus infection. Do your children complain of headaches at the front of their head? She seems , to me , to be heading more for another PANDAS episode more than anything.
  18. Ahh, just when we were enjoying a brief PANDAS-Free few weeks.........then the tricho-whatever------pulling ones eyebrows and eyelashes kicked in ( DD8, post T&A 7 weeks). Anyone have any suggestions for this? She is completely aware, after the fact, that she does it. But has no clue WHEN she is doing it.
  19. Sorry, I am unclear about what herxing is.
  20. dd9 had T&A back in December. about week 4 post T&A we were at a GREAT point even, despite, a virus/cold. However, about week 6 we have a lot of complaining........clear runny nose constantly, headache, and tummy ache. I was able to get some Omnicef for her as we thought it might be a sinus infection since the cold ( clear runny nose) was lingering forever. My question is about gut issues. How can you tell? See, the complaint of the tummy aches started before we started Omnicef last week so I don't "think" it is from that...... And our last antibiotic had been after the T&A.....so 4 weeks ago, at least. Before that the last antibiotic had been about 2 + months before that.... So I would not think it is from antibiotics but the constant tummyache is starting to take its toll on me............help!
  21. I have noticed this ever since her "grown up " teeth have started coming in. Yes, I am sure it has a lot to do with genetics and the fact that she hates milk. Has a Vitamin D defficiency we have been trying to correct since summer ( with chewable vitamins). Thought?
  22. Darn, I have to work. Please keep me in mind for the next time.
  23. Hi, We live nearby and have seen Dr L. Yes, the Hyatt in Bethesda is RIGHT off the Metro Red Line. THe trip from Union Station to Bethesda on metro will take you about 20 minutes. The cab ride from the Hyatt to Dr L should not take more than 8-10 minutes, it is very close. Our first visit with Dr L was a visit that was around $400 ( less than most people because our meeting was shorter than expected) and then the Cunningham tests were another, separate, $400 ( tax deductible).
  24. HI The blisters are still there on the non-pandas child. I am assuming virus because she has a clear runny nose and wicked cough, The thing that is scaring me is that this is my non-pandas child and she has been saying things like " my mind is all screwed up, like I think one thing and then I want something else" and " I cant stop picking off rhis new nailpolish" Weird, No, I notice nothing weird in my dd8 throat related to the T &A. It is weird to look in there and see,, nothing. No dots or white stringy stuff though. Though- She has been complinaing her ears itch and a runny nose today......allergies?
  25. Hi, my dd5 ( non PANDAS) has a cold. I ( as usual) peeked in her mouth to make sure it didn't look too red. I expected it to be red because she has a lot of post nasal drip going on. Anyway, she has these clear blisters ON her tonsils. Both sides. Throat looks red but not awful. I have some rapid tests here I can use in the AM but just wondering if anyone else has experiences this ( when the blisters are not the typical white/strep blisters). My older dd8 just had T&A 4 weeks ago.
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