Nice Improvements on Zith

[Suzan]

I know now that the girls have PANDAS and that the first treatment is antibiotics and that many people say they see a nice improvement in 4-5 days but it still is really amazing. I started them on 500 mg of zith for 10 days (then I'll reduce to 250 mg and see how they do, per our doc) and it's been 5 days I think.

 

I can tell a huge difference in dd6 and it's amazing to me to watch it happen. Last night she ate all her chicken, green beans and asparagus, a bunch of carbs and popcicle and then more carbs. She was still saying she was hungry as she was going to sleep. Tonight was more of the same. This from the girl who 2 months ago I was worried she was failure to thrive. She has a sassy, annoyed, I-know-everything attitude that inside tickles me to death because she's not acting like a baby and asking to be picked up or carried or grabbing on me or sticking her feet in my face.

 

DD7 is not complaining of pain any more and seems to be falling much less. She is still pretty emotional and reactionary but it's pretty quick to resolve. She's still complaining of wetness which is the chief complaint of Vag. Strep at our house so that is confusing. One interesting thing, she seems more beautiful than ever to me the past few days. I wonder if it's because she's feeling better so she's happier?

 

Anyway, I needed to share this tonight and figured this would be the best place with people who understand.

 

Thanks for reading!

 

Susan

[mom md]

We did 10 days of amoxicillin in March with no change. We then switched to Zithromax and in 4 days my son's snake like break dancing moves settled into simple finger rolls. He was having sever insomnia, mood swings, tics, OCD, anxiety, and after 5 -7 days these symptoms were almost gone. I agree...watching it was both amazing and confirming that this was caused by a bacteria. We are at 90% now but still see some symptoms of chorea each day although they are much milder. His antibodies are still in the top 2% of all PANDAS patients and he meets criteria for SC so we are planning on plasma exchange next week.

I know now that the girls have PANDAS and that the first treatment is antibiotics and that many people say they see a nice improvement in 4-5 days but it still is really amazing. I started them on 500 mg of zith for 10 days (then I'll reduce to 250 mg and see how they do, per our doc) and it's been 5 days I think.

 

I can tell a huge difference in dd6 and it's amazing to me to watch it happen. Last night she ate all her chicken, green beans and asparagus, a bunch of carbs and popcicle and then more carbs. She was still saying she was hungry as she was going to sleep. Tonight was more of the same. This from the girl who 2 months ago I was worried she was failure to thrive. She has a sassy, annoyed, I-know-everything attitude that inside tickles me to death because she's not acting like a baby and asking to be picked up or carried or grabbing on me or sticking her feet in my face.

 

DD7 is not complaining of pain any more and seems to be falling much less. She is still pretty emotional and reactionary but it's pretty quick to resolve. She's still complaining of wetness which is the chief complaint of Vag. Strep at our house so that is confusing. One interesting thing, she seems more beautiful than ever to me the past few days. I wonder if it's because she's feeling better so she's happier?

 

Anyway, I needed to share this tonight and figured this would be the best place with people who understand.

 

Thanks for reading!

 

Susan

[T_Mom]

double post--sorry

[T_Mom]

Susan,

That is wonderful news--I am very, very happy for you.

 

MomMD, I have to ask about the "snake-like break dancing" moves...At my daughter's worst exacerbation last year, as she was sinking into OCD-non-function, she would do break-dancing moves periodically.

 

The break dancing has continued through this past year (though it seems more in control), but it is as if she just suddenly couldn't help dancing. Even her teacher commented on it more than once, re: my daughter's "odd little dance moves" which she would suddenly do in class. I realize this may sound odd but I have wondered if the basal ganglia being inflamed might trigger some reaction in the kids.

 

Susan, again, wonderful news that you are seeing such good turn-around with the antibiotics. Wonderful.

T.

[mom md]

That is what Carter's teacher said he was doing. He was getting up from his chair and "dancing"around the room. He also was shouting out which we finally realized wer vocal tics. His "dance" moves were very impressive. Completely involuntary.