Today was Spencer's first Behavioral Peds appointment. While they will be quite helpful in planning for school and Spencer's IEP and 504 plans, it was still kind of a downer. Spencer took a while to warm up to them, but went wild once they brought out the fun toys. They are mainly concerned about his communicative skills. He tested today on a 10 month old level for expressive language, and 12 month old for receptive. I told them I believed that his receptive skills are way better than that. While he is improving, it still sucks to hear all the stuff your child isn't doing. They also agree that the best way to go is offering Spencer different means to communicate and see what he takes to best...this also means we need to get an Ipad.
As far as his IEP goes, they agree with me that he needs a full-time aide at school. They think he will need the individualized attention that an aide can offer, as well as the protection. They agree it should only be a nurse if he requires cathing at school.
We went from a bummer appointment to a great genetics appointment. Doctor Hopkin is amazed with the amount of progress he has made. He agrees with DDBP's ideas for Spencer's IEP including a whole language approach for his speech development. He says we know Spencer is going to have physical limitations, at least for the first part of school, as well as communicative. He also says we also know that he might have some cognitive delays. He remains optimistic about Spencer's future and doesn't want to set any limitations on Spencer's abilities. We have a general idea of what Ohdo is going to mean for Spencer, but we have been "plugged in" to the right services since the beginning and work with him a great deal. He also agrees that Spencer will grow up to be a cranky old man, which is reassuring. He does want the heart problem fixed sooner rather than later, and I agree with that as well.
I asked about the potential of Spencer having another syndrome. Hopkin thinks that Spencer's spine issues as well as the bladder are just rare symptoms of Ohdo, which is actually comforting, especially with me being pregnant again.
Spencer has apparently been quite popular in the genetics department. Doc told us when he first suspected Spencer of having Ohdo Syndrome, he told his peers who asked him what it was (yeah, it's that rare). Then they said, "No way." Then he showed Spencer's picture compared to the pictures of kids from a study, and they said, "Maybe." Apparently everyone was floored when he was actually diagnosed with it. Doc seemed pretty happy with the diagnosis and I suspect he got a lot of nerdy genetic street cred when the results came back. Spence was also introduced to a medical student today. I heard Hopkin give her the rundown of Ohdo and mention she'll probably never see another kid with it. It's kind of strange, but it's kind of cool at times to have a kid with such a rare disorder. Sometimes it's annoying and sometimes isolating, but it feels good to educate and maybe help another undiagnosed kid that may just have it and the doc can say, "I've seen this before." The thing with the Say-Barber-Biesecker-Young-Simpson type of Ohdo, is that all of our kids look nearly identical.
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Rachel, came upon your blog by accident. I, too, have a granddaughter with Ohdo syndrome in Michigan. Coincidentally, the only known birth defects detected during my daughter-in-laws pregnancy was club foot and a small femur. After years of testing, Addison will be 3 in March, 2013, drs. in Ann Arbor diagnosed the Ohdo syndrome. This particular dr. - Dr. Innis, I believe is his name, took one look at Addison and said he believed she had Ohdo syndrome. Your blogs are very much like Addison. My son has created a page for her called Addison's allegory. I hope you can read it and perhaps see some similarities in your stories. Good luck with your pregnancy. My son/daughter-in-law were told that there was only a 1% chance of having another child with Ohdo, but they have not gone down that path yet. I will follow your story and wish you and your family only the best. I know how hard this syndrome is for both the child and parents and grandparents. Addison does not speak, she eats some foods orally, has a feeding tube and is still on oxygen since birth. God bless you.
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