Wilma Jenks

I think the records of his patients. I am trying to locate my child's numbers to post them. There is so many labs with these IgE IgG4 on it.

Amber. Please keep us posted on your little one. I am so sorry you guys r going through this.

I had Ingenex test done. B4 hand, I asked the person helping us, if we should use provocation. He said not that the test alone would be enough to tell us what we need 2 know. I have a lot of faith in this person, but keep hearing the opposite from people. What is your experience, and I welcome comments. Thansks so much.

going 4/18

Have any of your chldren showed low IgE and IgG4 on any of their blood work? Dr. T said: "After analyzing hundreds of children with PANDAS, I've noticed patterns of changes in the immune system in some kids. Skylar seems to show one of these (low IgE and IgG4); it's a pattern that I only discovered recently by looking at hundreds of kids' data. I only got to analyzing Skylar's data yesterday so this is why haven't contacted you sooner. It's important that we do a follow up visit to discuss, this could be very important to why she developed OCD."

Do u need to fast to check strep titers?

Thank God. Praying for you guys!!!

I have heard that UHC is the ONLY insurance that covers it. I hope I am wrong since I have BCBS.

Are these 2 different tests and which is most conclusive.

Has anyone had any success getting it covered with Dr. B or Dr. K?

The person we work said it is not definitive wether is it PANDAS or not based on the abx. working or not. The abx. did not help in our case, so I figured it was not PANDAS, but he said he is very confident it is PANDAS, even though the abx. did nothing but speed her up. Any commments are appreciated.

does my child need to fast for the IgeniX test?

I have the IgeneX test kit, but I am not sure where to have the blood drawn. I would prefer not 2 drive hours down to our doctors office. Any suggestions? Thanks

I need 2 do the IgeneX test. Has anyone ever gone to Lab Corp. or to a Quest lab to have it drawn? I have never heard of Quest lab, but saw it mentioned on the board. Can someone please suggest a place to have this done. I would prefer not to drive 4 hours to have it done, if possible. Thanks

Amber... This stinks. Stay calm. I have found that when things get crazy 4 us (and they constanly do)that something encouraging happens. We r looking in 2 the IVIG, so I know nothing about it. I can't wait until someone else posts 2 help u. I can feel your pain.

Not sure what I would do without it. We were told 2 use it.

How exactly did he know there was strep in the sinus'?

I am so sorry Suzan. Thanks for your help.

did anyone see symptoms from lyme at birth?

Would you mind giving me a contact number for Dr. Jones. I can't seem to get through to him.

Has anyone had worse insomnia from the Rilutek?

Scott Smith is hesitant to try steroids because so many things activate her. And steroids have that tendency.

Yup. I am calling doctors today.

I use to be able to get my child to sleep (although) restless with lamictal and some Inositol. In the last 2 months, nothing puts her to sleep. Last night up til 4am. It has been this way for 2 weeks. It seems to have started after the Azith, and Nystatin. She was taken off of that so she could be treated for Clostridia. Her OCD is severe at night. It is worse than I have ever seen. Before that, she was psychotic looking at night and engaged with imaginary friends. You could not talk to her, ever. At least now, with the OCD, I can have a converstation with her. I have tried Clonodine, 6mg of melatonin, and seroquel. The seroquel will eventually get her to sleep, but does not stop the OCD, and the seroquel makes her mean the next day and in a total confused state. Any suggestions? I have our psychiatrist and Scott Smith working with my child. This not sleepping and severe OCD at night is really tearing us into pieces. We are considering IVIG, and need to investigate more....Forgot to mention, we are now trying Rilutek. Last night was first night and it helped a bit with OCD, but made insomnia even worse.