February 13, 2007 mcfadyena

Infusion #2 (yesterday)

Infusion #2 was easy breezy compared to #1. We didn’t need a urine sample, the kids (and I) didn’t need to be clean and organized for reporters and photographers, Trey didn’t have any allergic reactions to new creams, the nurses were able to access the port easily, and we didn’t have to stay for 2 hours after the infusion this time, only one.
We arrived at the MDU at 7:30am again. Everything went fine, until the nurses called down to see what was taking the pharmacy so long to mix the drug. They hadn’t received the order! At 9am, Tamara (Trey’s SLP) came. She had the idea of doing Trey’s sessions at the hospital, both to cut down on our appointments during the week, and also to distract Trey during his long day. Brilliant.
The infusion started at 9:40am and was finished at 1:15pm. No reactions. While we were there, we had visits from Dr. Mahmutoglu, Dr. Stockler, and Dr. Lillquist, all biochemical disease doctors. They checked out Trey’s hernia and are curious to see what the general surgeon says (we have an appointment tomorrow).
From the ERT side of things, it would be ideal to wait for surgery on Trey’s hernias until he’s been having the enzyme for about three months. Hunter Syndrome affects connective tissue, so along with enlarged organs, the weak connective tissue causes the hernias. Without ERT, or if we do the surgery too soon after the ERT has begun, the hernias are more likely to come back. If we can wait three months, the enzyme will have had a chance to get into his body, strengthen the connective tissue, and shrink his organs back to “normal” size.
Dr. Mahmutoglu (aka. Saadet) also made an interesting comment to me about reactions. Because Trey is allergic to Ametop, and because he has food sensitivities to eggs and walnuts and has had various skin sensitivities over his 3 years, she thinks that he will quite possibly have a reaction to the ERT. Not exactly what I wanted to hear, but I guess now I’m prepared.
Due to naps and whatnot, we didn’t leave the hospital until 3pm, but it was a good day. And to top it off, Trey hasn’t had any reactions since. No gas, bloating, diarrhea or headaches.


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