Yesterday we had a long appointment with Dawn. We went over the “what not to do” and “what is okay to do.” Since information on FOP is all online Alan and I knew most of the information. However we learned a few things.
Alan asked about treating FOP with Celebrex. Basically Celebrex has the same functionality as the Naproxen that we’re giving her. Doctors do not like to prescribe Celebrex to children b/c of the potential side effects. We thought that Celebrex would be able to stop blood cells from forming which would prohibit any additional bone growth (original bone and FOP bone). Maybe it does but Erin won’t be taking it right now.
I need to verify this but this is how I heard it: The actual gene that was found to mutate in Erin is not the exact gene that most FOP people have. Another person was diagnosed with FOP in 2006 has the same mutated gene that Erin has. I really hope this is a good thing. This will be on our list of topics to talk to Dr. Kaplan about. I am going to ask around on FOPonline about it. However, the “FOP” gene is on the second chromosome pair. Now I really need to read the annual reports put out by Dr. Kaplan and his team.***Correction: I have since found out that the actual FOP gene is on the long arm of the second chromosome. Erin does have the mutated gene…the one and only ACVR1.
If Erin is in good health and her FOP hasn’t been too aggressive (and she is of age), she can get pregnant without passing the FOP gene down to the baby. It’s not that I want grandchildren (especially any time soon) but at least she has the option (again…when she is of age). Dawn says there are procedures that can be done to completely eliminate any chance of passing the gene down. I am sure it has something to do with IVF of sorts. This little piece of news just made my day. At least there is hope. Right now…all I want is hope.
We got the paperwork for the handicap placards for the van. I’ve been looking online and she won’t qualify for SSI just yet. Alan said when she turns 18 years old she’ll be able to apply.
Erin is swollen around the neck and her lower back on the right side. These flare ups in the trunk are real tricky to spot. Dawn showed us where Erin’s right side of her back was hard and the left side is soft. We lifted her hair and her neck is swollen and hard. I’ll start giving her the Naproxen today once she starts eating.
We are getting an electronic copy of Erin’s MRI and hopefully her other x-rays will be on the disc as well. Alan is going to post the MRI pictures on the website once we get them.
Dawn is going to email us the newest report from Dr. Kaplan and his team. It’s dated for July 2008 so it’s fresh off the press. It’s 70 pages long…ouch. She had things highlighted and flagged so she had been doing her homework.
After our meeting with Dawn I took Erin to see Dr. Shieble (her pediatrician). I think he’s the best. He walked in with a stack of paperwork and he obviously had been doing his night-time reading as well. He did another examination and we talked about her current flare up. He had done his research on vaccines as well. Luckily most of the vaccines are available to administer sub-cutaneous…even the flu vaccine. The only one she cannot have is Hepatitis A. Oh well…we’re not going overseas anytime soon.
I got a good nights sleep last night and I am in a really good mood. My nausea is gone and I haven’t had a headache. I have a couple of events to go to this weekend in which I will go with friends. I’ll have some time away from the house and away from the kiddos. Hopefully this will be the first time I will be away from Erin and not be emotional.
Dr. Kaplan has offered to examine Erin for free however we need to fund our way out there. We have to find out his schedule but we’re hoping to go back east in September. I look forward to seeing the grandparents and aunts/uncles in Tennessee. Then we’ll head up to Philadelphia. I keep thinking of the possibility of seeing family that I haven’t seen in Y-E-A-R-S. I have cousins and an aunt and distant cousins in the northeast. To think that we all may get together again and it’s all because of Erin.
