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.

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.

UPDATE 8/20

We had our appointment with the new Neurologist at St Christopher's children's hospital on Thursday. We didn't get any definite answers but I feel the trip was worth it. This dr doesn't feel that what Connor has is a straight forward case of cerebellitis. She told me that cerebellitis does not cause developmental regression or developmental delay. She also said Connor's liver was enlarged. She is not sure if it is enlarged within normal limits or not. It isn't a massive swelling but she could definitely feel it which you are not supposed to be able to do. Connor is going to need a CAT scan now to check that. Another sedation procedure. If his liver is enlarged then that would make her look at a whole new area of things that Connor could have like storage compartment diseases. I have looked that up and there are 50 different diseases and every one of them have different symptoms and different prognosis. It is going to take me awhile to get through them all. She also wants him to have a 48hr EEG to make sure that his zone out times and twitches are just that and not seizures. She is going to back our dr in trying the IVIG therapy. If that doesn't work then she feels we need to go ahead with the muscle and skin biopsies to look for mitochondrial diseases.

We go to our regular Neurologist on Tuesday the 26th to see where we go from here. She wants to do a EEG in her office which doesn't make any sense to me since the other dr recommended a 48hr EEG. We need to bring a letter from our physical therapist stating what she sees with his ataxia which is that he is more shaky and off balance than normal and things he was able to do even a week ago he is struggling with now. Our dr is going to use all this to try to convince the insurance co to pay for the IVIG.

We are also trying to bet a behavioral evaluation on Connor due to all the Autistic traits he is showing. Both our physical therapist and our developmental intervention teacher have recommended this in the hopes that we will be able to get a behavioral therapist in here to work with him too. We have also started Connor with a chiropractor. We haven't seen any results with that yet but he has only been working with him 1X/week for about a month now. We are just keeping our fingers crossed that something is going to start working. I will post again as soon after our appointment on Tuesday as possible.

7/0/08

There hasn't been alot going on with Connor. We have an appointment with a new neuro dr at St Christopher's in Phili on 8/14. Our dr's are hoping if this dr also agrees that we need to try the IVIG therapy then it will help in the fight with the insurance co to pay for it. He has been getting his therapies each week. We did have to make a call to his neuro dr to let her know that his ataxia has gotten worse. Things he was able to do in physical therapy even a week ago he is struggling with or can't do now. When he is in the tub we have to keep a hand behind him because he will fall over backwards. Our physical therapist is writing a letter to let the dr and insurance co know that he has gotten a little worse. I will keep everyone updated as things happen here.

UPDATE 7/2

Well here is the latest. Connor's IVIG is on hold. We were told CHOP was trying to get him in for this Tuesday 7/1. We have been on a holding pattern for the call to go in. I got a call today that our insurance co has denied it. Our neuro dr called and spoke to the medical director of the insurance co and they still denied it. So, the last chance to get Connor in is some last process the neuro dr can try but it takes a long time. It is going to be a few weeks at the earliest for all this to happen.

In the mean time they want us to make an appointment for a pediatric movement disorder place outside of CHOP to look at Connor and see if they can come up with anything. I will keep people updated as things happen.

6/27 Hospital stay cominig

Connor has started his therapies. I was so worried that we wouldn't get them started before he went back into CHOP. After every admission he has gone from a loving easy going little boy to one who is scared of everyone but his immediate family. I am hoping that having him get used to his therapists before the hospital stay he will not have such a hard time accepting them in his home after. I knew that if we waited to start this till after we got home things were going to be much harder. He seems to really love his therapists and has connected with them very quickly.

It looks like he is going in to CHOP on Tuesday 7/1/08 for his IVIG therapy. We were all hoping it would get started earlier but 6 days after Connor's spinal tap he woke up from a nap with a 103.8 fever and it only climbed to 104.2 in the pediatricians office. So, things are a little more behind than we hoped at this point because he had to be healthy before they could go ahead with the IVIG therapy. We still don't know if he is getting the 2 day or the 5 day infusion. From what I read the initial treatment should be 5 days and any booster treatments should be 2 day. But, who knows what they are planning. If we are in for 5 days then Connor, Joe & I will be in the hospital for the 4th of July. What a bummer!

In the beginning of all of this I had people mention having fund raisers to help us with all of this. I wasn't ready to say go ahead yet. I don't know if it was because I kept hoping that everything would end at any time and Connor would be all better. Reality and the bills have set in! Now that schools out (Julia's teacher offered to do some fund raisers) I have decided that we have to do something. I just don't know how to do this, when I can possibly find the time to do this. Is it OK for a person to throw a fund raiser for themselves? That's something to think about. Anyone with any ideas on how to do this or what to do please, please place a comment. I really need help here.

Keep Connor in your prayers while he goes through this. Pray he doesn't have any major side effects like anaphylactic shock or meningitis. And let's not forget to pray that this will work!! Please God something has to give here. Let this work!!!

UPDATE 6/17

Connor had his MRI & spinal tap on 6/11. Nothing has changed. They still see the foci's on the MRI. They haven't gotten worse but they haven't gotten any better either. The results that are back from his spinal tap have not given them any clues.

His neurologist called me yesterday and she wants to put Connor into the hospital again and start IVIG therapy. No one is sure if this will help or not but she wants to do something. She has decided to go with the IVIG therapy over the steroids because his spinal fluid didn't show any protein or white blood cell clusters to point her in that direction. She told me that there are some known risks. They are anaphylactic shock (it is a blood product), meningitis, encephalitis & headaches. She told us to research it on our own, talk it over and let her know our decision. If we decide to go ahead with it she will get things set up for Connor to go into the hospital.

We looked it up last night. From what we read the chance of Connor having any of these side effects are much less because of his age. I think that he has a much higher chance of having a complication from the steroids than he does with this. The only thing we are worried about is that the FDA has only approved this for 6 different conditions and from what I read Connor's isn't it. Which means that insurance may not cover it. IVIG is being used for a bunch of different conditions with some very promising results. It has been used for MS, fibromyalgia, chronic fatigue and a whole bunch of other things but FDA only approved it for a whopping 6 conditions. The cost is VERY expensive. For children it is around $3,000/infusion. For adults it is about $10,000/infusion. We are not sure yet if his dr is going to put him on a 2 day or 5 day infusion. If insurance does not cover this there is no way we can go ahead with it. I am still trying to work all that out and figure out what we are going to do. I was thinking of letting them go ahead with it and paying $5/month. The only thing to do is just wait and see what happens but I did call her to tell her we want to try it. There are risks but the risks of not doing anything and letting Connor go on this way and not have a chance at a normal life is a risk I don't want to take.