Chicago visit #3

Today was our visit with Dr Pachman. Our appointment lasted 4 hours today. She was not happy with his progress and is changing quite a bit of things that we do for his treatments. She said she has patients that were worse than him a year ago that are further in treatment and is doing better than him today.

She is increasing all him meds and starting him on Zurtex because she has found that there is an allergic reaction in his skin rash that she feels can be controlled with allergy meds. She says that this skin rash can possibly cause heart disease in the future. She also says that she thinks that he would benefit from seeing a Psychologist. Her reasoning for that is kids with an illness tend to feel like they cant control their illness so they start to obsess over other things. I can see that in Zack and I have asked our Stanford Dr's if it's possible that kids start to get OCD because I feel Zack has that a little. So I will look into that when we get home.

He is in the 4% of height and weight and wants to get a better idea of this through a dietitian. I showed her the nutritionist report from a few years ago and she said we should explore that again. I will try what ever she thinks will work. We're back to milkshakes and ice cream whenever he wants it. His weight and height need to improve. She also did a body fat test on him to compare it all.

The Physical Therapist showed me how his muscle in his right leg is a lot more pronounced than his left. His hamstrings are also really tight in both legs. His left side is still quite a bit weaker and not sure why it's so different than his right. We got some exercises that we should do at home. We are doing a follow up on his bone density with a scan at 9am tomorrow morning.

When we get home we will start again IVIG treatments with one every 3 weeks. Last month we did a 3 day pulse of steroids but there was no follow up with it. SO we will be doing another 3 day pulse and a 1 a week infusion for 8 weeks. We're hoping this will help him and put him over this hump we are stuck on.

I feel so much better talking to Dr. P about all this stuff going on. She tells me everything I need to know. She really wishes that we could return in 3 months but were not sure if that is possible.

We are staying at the Ronald McDonald house again and have met some really great people. I sit here and think about everything that he has been through and everything that we still have ahead of us. He is such a strong boy and cant imagine going through it myself.


As I am sitting here this mom comes in and we start talking and her daughter has Cancer and she found out today that its has metastasized into her lymph's. It is a very aggressive Cancer and not sure the out come. I always say that things can be worse and this proves it. This is my worse and hope this is the worse we go through.

This has been an emotional Day!