Maddy

We began IVIG infusions March 2002. Unfortunately, now our family physician is incapable of caring for her. We have been looking for a pediatrician in our network but it takes time to get appointments etc. I thought we had found one and two days before her infusion he "bowed out". He was "extremely uncomfortable" with her treatments. Mostly related to the dose of benadryl she is given before the infusion. It is 2 1/2 times the normal dose. It is used to counter act the effects of the IVIG. They also treat her with Decadron ( a steroid) before and after the infousion. Usually they only pre-treat but Madalin vomitted and had diarreah for a week after the first infusion. the next month, for the second infusion they used a different type of Ivig. I think there are 9 brands available. She did a lot better the second time. Her Aga level was low, although I am yet to fully understand the meaning of that.The second infusion was done in a local hospital but now that we don't have a local doctor, we have to go back to Springfield. Overall Madalin's behavior seems to be on a downslide. She is SO irrittable.

7/10/02
Madalin's behavior seems to improving. She has had a reaction to the Ivig a couple times. After I became physically ill for weeks, over not having a doctor, I started to get some leads. It took a lot of research but found a pediatric oncologist who is also a pediatrican. He has been coordinating her local care and has an open line of communication to Dr. Pranzatelli in Springfield IL. He is also sending us to the University of Chicago for a Nephrologist. He also feels if Madalin is going to go through another round of chemo it needs to be done at
Uof C. It looks like that will be happening on the next several months. We will be having a CT of her chest done this month. They want to make sure the tumor hasn't returned. She was started on Trazadone several weeks ago to help her sleep. After 1 1/2 years of her waking up every 2 hours it was time. Trazadone is a modified anti-depressant. It comes in pill form so we have to crush it to give it to her. We have tried everything and the only way to give it to her is in powder form. She gags everytime. The first two weeks it would knock her out. Now, it helps her sleep through the night but she continues to wake up some and it takes a long time for her to fall asleep. She is still awake at 11:00 p.m. I enjoyed the few nights of her falling asleep at 9 p.m. I felt like I had some time to myself before midnight. Even on the days she is worn out, she just doesn't sleep well.

12/02
Madalin has 3 more Ivig infusions left. The last 2 have had side affects. Mostly she has had headaches and will lie on the couch all day, sleeping most of it. She has been breaking out in hives also. She ends up covered from head to toe. We tried to got to every three days on the Acth but her symptoms have returned. She is 3 now & cries ALOT, for no reason, she just can't help it. Her balance has been off & she is shaking some. Her eyes have been really bothering her. I can see the opsoclonus in them. I notice it & then she starts rubbing them. She has even cried at times because of it. I can't imagine how that has to feel. Your whole world shaking in front of you. I am sure the muscles feel strained at times. You can tell just by watching her it is irritating.

1/12/03

We took Madalin to Springfield to see Dr Pranzatelli recently. She wan't exhibiting shaking when we were there. Since, I have seen quite a lot and her behavior is terrible. She cries so much & sometimes it is impossible to get her to stop for 20 minutes or more. Since her symptoms are inconsistant, we decided to stay where we are on the meds for now. The Ivig will be continued until spring in order to prevent a relapse from a viral infection. So much for being almost done. He did say it would be o.k. for her to be around a small number of kids in a structured enviornment. So, we are checking into the Special Education Learning Facility (S.E.L.F.) for a preschool program. We are hoping that will help with some of the behavior problems. I think it will help alot with bordom. I also hope to be able to add more speach therapy through S.E.L.F. She is really starting to make some improvements, the 1 1/2 years of therapy has started to pay off. She at least makes an effort during therapy to apply endings to her words without being prompted. The rest of the time with prompting, she will give you an ending. It isn't always the right one but she tries really hard! She is really hard to understand. Most of her words sound the same.

UPDATE