8/28 IVIG APPROVED

We got a call on Monday night from our pediatrician. They harassed the ins co and after days of phone calls and some great dr's persistence...our ins co approved the IVIG therapy!!!!!!

We had an appointment with our neuro dr on Tuesday and we weren't sure of any of the details yet. We went prepared in case they put us right in to the hospital. Well nothing ever works out as planned so we are still waiting for our admission date. It looks right now as if it is going to be on Tuesday next week 9/2.

No one is sure if this is going to work or not. It is something that they are just trying. As our dr put it, this is something that if we didn't try we would always wonder what if. If this doesn't work then the next step is the muscle and skin biopsy. Our neuro dr is trying to set it up so that he will come see him while we are in the hospital. Connor will also be getting a full body CAT scan to check the liver enlargement and to see if that gives them any clues. They also want us to see a developmental pediatrician. Our neuro dr made a statement like "I don't know if Connor has truly regressed or if he has just developmentally plateaued". If he was doing something at 12 & 13 months old and he is not doing it now then that is a regression!! She also asked if I thought he was autistic. I told her that I have asked questions about it but only because he has autistic traits not because I think he is and every dr we have asked has said no!! What ever is causing his ataxia, balance, choking and speech problems is also what is causing the developmental problems.

We may not know ahead of time what day exactly we are going into the hospital so I may not be able to post again until we get home. I will update this site as soon as I possibly can. Please keep praying for Connor. We are real scared going into this. He could have some bad reactions and side effects. I pray we are making the right choice and that it will help him. Thank you everyone for your prayers. They mean more to us then we can possibly tell you.