Hello, everyone! Thanks for all of the calls and e-mails of concern for Dakota and I traveling to Fargo during the last storm! We were able to leave a bit before the storm hit, but we were stuck in Fargo for a few days. Although I am VERY grateful to the Ronald McDonald House for letting us stay through the storm, I have to say that I really missed Children's Hospital and the Rainbow House.
The Endocrine Clinic in Fargo went well, but we left with a lot more questions than answers. Dakota has hypothyroidism, but the cause is not known. While NF can affect the endocrine system, it is not as common. We have questions about how long this has been a problem, if it is the cause of some of the cognitive delays and regressions, if it is tumor related, or if it is a coincidence that he has an auto-immune disease (Hashimoto's is the official diagnosis for now) in addition to the NF, syringomyelia, and autism. It has a few of the doctor's in Omaha and now Arkansas (with Dr. Schaefer, the geneticist, there) scratching their heads a little. We have another appt locally today as a follow-up to begin thinking about treatment and for scans and more lab work.
With all of the changes in medication (seizure med and eventually the synthetic thyroid medication), we are on a roller-coaster of behavior. Dakota is experiencing headaches from the Trileptal, but now that we have that figured out and a little more managed, things are a little better.
The other news is that Dakota is beginning puberty. Sigh! Although you never want delays in your children, this one area could wait a few more years!! I have always found it to be a sad irony that some kids can be delayed in so many areas except for the area of puberty! It seems like a rather cruel joke to play on mothers! :-)
Dr. Lutz said it best: "At least God doesn't give Dakota everything at once. Granted, it doesn't seem to end, but maybe this way is more manageable." :-)
We will let you know what happens. Thanks for checking in!
Rachel
