How do you judge?

[MrPGAPro]

My daughter got diagnosed 8 days ago w/ PANDAS. She is only showing signs of minor OCD symptoms about 2 or 3 times a day for 30-45 seconds...what does this mean...if anything?

 

She started Penicillin 7 days ago...3 x a day 6ml each dose...

 

 

I don't know...its hard to get out of my head (worry)...

 

as you all know.

[Stephanie2]

Are you saying that after 7 days she is only showing these minimal symptoms, or is that how she was when you started the penicillin? Assuming you are talking about after 7 days of treatment, I would say that it sounds like she is probably 95% better and she is on the way up! That's kind of where we are at right now after a steroid burst, except he only shows OCD symptoms maybe once every 2 days for about 30 seconds (I hold my breath for those 30 seconds). Will she rid herself of the OCD altogether? Not sure, some kids hang on to minimal symptoms between exacerbations (like a subclinical level of symptoms).

 

Sounds good so far. Best of luck keeping her healthy!

Stephanie

My daughter got diagnosed 8 days ago w/ PANDAS. She is only showing signs of minor OCD symptoms about 2 or 3 times a day for 30-45 seconds...what does this mean...if anything?

 

She started Penicillin 7 days ago...3 x a day 6ml each dose...

 

 

I don't know...its hard to get out of my head (worry)...

 

as you all know.

[thereishope]

If she is improving to the point that is the OCD she has left 7 days into antibiotics, that's good! It also reinforces the PANDAS dx. How long will she be on the penicilliin for?What other symptoms did she/does she have?

[7upMom]

My daughter got diagnosed 8 days ago w/ PANDAS. She is only showing signs of minor OCD symptoms about 2 or 3 times a day for 30-45 seconds...what does this mean...if anything?

 

She started Penicillin 7 days ago...3 x a day 6ml each dose...

 

 

I don't know...its hard to get out of my head (worry)...

 

as you all know.

 

I absolutely do not mean to scare you and do understand that all children react completely different and know that my 9 y/o son may not have the exact same issues as your daughter. But I do feel compelled just to say that - when our son was 6 y/o ( looking back he had prob had PANDAS for much longer than before 6) but he was diagnosed with rheumatic fever- they placed him on long term penicillin. During the time on penicillin he was the most healthy we had ever seen him since he was 2- but after being on it for for 1 1/2 years they removed him from it and within one week he started having tics, then severe ocd, then major rages ( major PANDAS exacberation) and it never subsided but in the next year and a half of his life cont'd to get worse and worse until he was completely nonfunctioning, and placing him back on the penicillin and a changed antibiotic did not help either, until we did IVIG 8 weeks ago. I am not saying this will happen to your daughter, but please keep in mind that the penicillin did work for us until he went off and I would have given anything to be able to go back and change the doctors minds on what antibiotic he was on and taking him off of it. Again, I am sorry to word it so "scary" and this is just what happened to us but hope that maybe this will give you another avenue to look at when the time comes.