I have been meaning to provide an update but since we got back everyone (except Larkin) has either been sick or has had a tooth problem (me). Alan finally went to the doctor today. His cold set into his chest and now he knows first hand what I go through twice a year with bronchitis. Lovely stuff! On Monday I started feeling a dull ache in the upper right side of my mouth. By yesterday I was popping Motrin as often as I could. The dentist squeezed me in yesterday and surprise…I need a root canal. Yea! I think this is all payback b/c we enjoyed ourselves the two weeks we were gone. Our karma has never been the greatest.
In the meantime, I started several different blogs but never published them. Then today I received a summary of our visit from Dr. Kaplan. Thank God for these summaries b/c I forgot some important tidbits. First, her pulmonary stenosis (heart murmur) is minor and not relevant to FOP. Second, when Erin had her MRI in late May, it was noted that she has myelination deficits in her cerebellum. Basically the nerves in her cerebellum are not fully covered in myelin sheaths. Dr. Kaplan also told us that at this time that doesn’t have any clinical significance to FOP. I have learned through the FOPonline group, that there are other with FOP that have additional complications such as central nervous system issues. Specifically, I don’t know the details. However, I do remember the neuro-surgeon who we saw in May told us that the cerebellum attributes to balance. Erin has always struggled with her balance. Kate (Erin’s OT/PT) worked with Erin for two years to help her learn how to redistribute her weight and how to catch herself. Although the myelin sheaths issue is not linked to FOP, I am hoping that doesn’t attribute to additional issues down the road.
Dr. Kaplan goes on to confirm that Erin has classic manifestations of FOP (clinically and molecularly). He again stated that Naproxen and Prednisone were perfectly suited medications to take for suppressing FOP flare-ups and pain. He made note that she does have “limited range of motion of her cervical spine in all modalities, normal range of motion of the jaw, very limited range of motion of both shoulders, and limited range of motion of the left elbow.” Gosh he’s good. He was doing part of his examination without her (and I) knowing. He did mention that some FOP patients develop a bony area around the knee. He spend some time feeling around her knees but did not feel these bones in Erin. In his summary he adds, “I could not palpate any medial tibial osteochondromas, but cannot be sure that she does not have them.” Tonight I will be googling “medial tibial osteochondromas.”
Dr. Kaplan ended his summary thanking us for coming out and noted how adorable Erin is. Well of course she is…she’s my mini-me!! He does want to see Erin annually. That’s good news for my NJ relatives. Now we get to visit them more than once every ten years.
I’ll end this blog with a couple links that was shared on FOPonline. One is of a show on Discovery Channel called “Mysteries of Mutants.” They did an episode on FOP and I cannot find this DVD for sale nor can I find in on Discovery Channels’ line-up. The other two are small shorts or a newspaper article about two other little ones with FOP. Enjoy!!