It has been a few weeks since I posted last, and I'm happy to report things are getting better.. The PANDAS symptoms are not an every day thing now and when they come it comes only in a mild form of OCD and anxiety and out burst. Nothing too major and nothing that is keeping her from her every day life, friends or school. Bedtimes are no longer bad and neither is getting her up and dressed in the morning.. Normally if we are going to have any issues at all it is right after school in the 1st hour after being home.. which could just be a normal brother and sister thing because it it's all 3 of my younger kids bickering then.. but normally started by Sweet Pea telling everyone to stop talking that the noise is bugging her.. but it's all good, much much better then it was a few weeks ago..
She is still on the 500mg of duricef.. At least until the end of this month when I think the doctor is wanting to lower her dose.
Last week on Dec 7,2010 we had the 1st visit with the child psychiatrist, She listened to everything I had to tell her and also got to talk with Sweet Pea alone.
It was a good day for Sweet Pea a non symptom day.. which was good because it meant that she was willing to go and talk with the doctor. In the end the Psychiatrist agreed that this is PANDAS but also gave her the diagnosis of OCD, She would like to treat with an SSIR Zoloft to which I said no thank you not at this time..
We go back to see her pedi at the end of this month he is not going to be too happy that I turned the Zoloft down again,since he has been pushing for it since Oct..
But I don't think it would help, I feel like it could do more harm then good, and at this point she really doesn't need it..
Every bad flare up of symptoms she has ever had has come on right before we found out she had an infection.. and all her little symptoms I can pin point them to her being around someone who is sick.. I just can't see how Zoloft is going to help that.. If her OCD symptoms were coming outside of her having an infection or being around those who do.. like there was no reason for a PANDAS flare of OCD and yet she was still having alot of OCD I would think strongly about Zoloft I have heard good things about it.. but when antibiotics take he symptoms of PANDAS/OCD away and makes her better.. I don't understand the push for Zoloft except for that is the go to treatment for OCD..
The one thing good that has come out of this though is that the psychiatrist given Sweet Pea's medical history thinks it would be extremely helpful to have immunology testing done on her and see if there is anything going on with her immune system other then PANDAS which leaves her prone to all these viruses and infections. I was to have that testing today at the Akron Children's Hospital but that is a good long drive away from us and we had a big snow storm so it has been pushed back to next week.
I found out that with PANDAS it's the immune system working over time.. that will not show up in the immunology testing.. but they can see if her immune system is low or what not which might explain why she got strep infections, ear infections, Mono, swine flu, viruses and abscesses all the time.. and if we can build up her immune system to stop the infections, that could stop the trigger which produces the antibodies, which attack her brain. So while she is NOT looking forward to this testing.. I'm sort of excited to see if anything is going wrong in there that can be treated.. and yet still hoping nothing is wrong and that all is healthy in there.. it's hard to say which way to pray.. if something is wrong it can be treated, if it's well we are at the same spot we were.. So I"m just praying Gods will be done.
So that is where we are at medical wise at the moment.. But she is doing well for the time being..