marylandmom

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.

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.

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.

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.

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)?

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?

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.

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?

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?

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.

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.

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.

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?

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.

They are a supplement/vitamin based co. Anyone have experience?