IVIG update 9/13

Connor went in on 9/2 to Children's Hospital to start his IVIG therapy. We got home late on Friday night 9/5. He handled everything pretty well. Connor had no major complications. He woke up during one treatment and freaked out. We aren't really sure what caused it. I think he was in pain of some kind because of the high pitch scream he was doing. They told us to watch for vomiting even though he did that right before we left there and they thought nothing of it. He has had a few more "freak outs" since we have been home but again I am really not sure what it means. He is completely out of control when it happens. He will only allow one of us to be near him or hold him at a time when he is going through this. I have some pretty major bruises from the last one we went through. He practically threw himself out of my arms. It was very scary to watch.

We met with a bunch of different dr's all over again while we were in there. We met with the metabolic team and the attending dr of the neuro floor. We were given a questionnaire to fill out because of Connor's developmental delays. They came back later to tell us that he failed the autism screening test on multiple levels. We now need to see a developmental pediatrician. I have been informed by our therapists that this will probably take about 1yr to get an appointment. The dr's also decided that if this does not work in about 1 months time we will start the process of getting him in for the muscle and skin biopsy. Connor also went through another overnight EEG. That lasted about 16hrs. Not the 48 hrs the other neuro dr wanted but at least it was better than just an office one. That came out fine. They didn't do the CAT scan for his liver because no one felt his liver this time. I would have felt better if they had done the CAT scan just to rule out a problem especially since there are 2 dr's on record that felt something. Connor also had a problem with his blood pressure while we were there. Actually he has had it happen quite a few times even before this hospital stay. His blood pressure went up to 154/90 at one point. It had been up and alarms going off many times and they would just come in and shut it off and say "he is really moving around in here, hu?" I would then tell them that he was sleeping and hadn't moved. They just blew that off too because IVIG lowers the blood pressure not raise it. I am going to be bringing that up to our pediatrician ASAP!

We were told that we could see results from the IVIG as early as 48hrs to 4 weeks. If after 4 weeks we don't see a change then they are going to call it quits with the IVIG. If we see results we can go through the process again in about 2 months. We have to go and see our pediatrician on Tues 9/16 for a follow up and to make sure he isn't having any of the other complications that we just can't see.

So far we haven't seen any thing to say that this is working. Physically, there has been no change. His choking has actually been a bit worse. Developmentally, Connor said his first word since this started that wasn't him just parroting!! He said "ball". His therapist has been working on this word since they started working with him. This week she held up the ball and he just said "ball". We are so excited. No one is taking this as a sign that the ivig worked yet because it is such a small step and we can't be sure if this is from the ivig or from the persistence of his developmental therapist. I still am holding out hope. We still have time. And I look forward to his physical therapy this week to see if we can see any improvement.

Connor's therapies through early intervention are coming up for a review already. I know that they are working on getting him a behavioral evaluation to see if behavioral therapy will help him, Physical therapy is looking for more time, developmental therapy wants more time with him and our social worker has told our case manager that speech therapy needs more time. In other words, Connor & I are going to be very busy!!!

Thank you for all the thoughts and prayers. I can't imagine how we would be handling all of this without the love and support we get from our family and friends (ones we know and the ones we just haven't met yet). I will post as soon as I can or sooner if there is anything new to tell you.