NF IS IN THE HOUSE!
I think starting with a little background on Carter would be a good idea . . . but I promise to make it short. No pun intended.
Carter was born with a genetic disorder called NF1 (neurofibromatosis). You can find out more about NF by visiting the Children's Tumor Foundation website. The basics though are that NF can cause tumors to grow on nerve endings. The tumors are generally benign but can cause a great deal of pain and depending on the location can be life threatening. When he was diagnosed at 15 months with a Bi-lateral Optic Nerve and Chiasm tumor he took Vincristine and Carboplatin (chemotherapy) weekly for 21 months. Fortunately, since ending treatment, everything has been stable. There are a few other little bumps we've had along the way and if you're interested and have nothing better to do, you can visit his Caringbridge page for a complete chronicle of the journey.
Now, that wasn't so bad. Was it?
Wait! There's more . . . .
Carter was born at a normal weight. (well, sort of. 9 lbs 9 ozs, 22 1/4 inches long. I didn't think that was so normal.) He grew normally as a baby and into toddlerhood. Looking back, at around the age of three, he seemed to plateau. Yes, he grew a little each year, but the rate was definitely not within normal range and he began falling lower and lower on the growth chart. The falling was gradual enough that everyone felt comfortable "watching and waiting". (another reality of NF)
That's where we've been for the past few years. Until recently. Which brings me to this blog. My goal is to chronicle our experiences with growth hormone replacement as it relates to Carter's NF and also our general experiences with the entire process. Over the next week or so I will be talking about the process we have gone through up until this point. We are still awaiting insurance approval for the medication. Once he begins, I will use this blog to journal his progress and any side effects he may experience.
I would also love to connect with other NF parents whose children are going through growth issues.
Wait! There's more . . . .
Carter was born at a normal weight. (well, sort of. 9 lbs 9 ozs, 22 1/4 inches long. I didn't think that was so normal.) He grew normally as a baby and into toddlerhood. Looking back, at around the age of three, he seemed to plateau. Yes, he grew a little each year, but the rate was definitely not within normal range and he began falling lower and lower on the growth chart. The falling was gradual enough that everyone felt comfortable "watching and waiting". (another reality of NF)
That's where we've been for the past few years. Until recently. Which brings me to this blog. My goal is to chronicle our experiences with growth hormone replacement as it relates to Carter's NF and also our general experiences with the entire process. Over the next week or so I will be talking about the process we have gone through up until this point. We are still awaiting insurance approval for the medication. Once he begins, I will use this blog to journal his progress and any side effects he may experience.
I would also love to connect with other NF parents whose children are going through growth issues.
My son (3) has NF1 as well. He is also growth hormone deficient & has been on treatment for 1.5 years (give/take). He has had great success with the injections. His cause for GHD is unknown....technically diagnosed with Idiopathic Short Stature. I will be happy to answer any questions that you may have. Although I am not an expert by any means. :) ((((hugs))))
ReplyDeleteJessica Walls Deon (on FB)
Oh thank you Chris. I'm so glad to hear that you've have a positive experience. It has been a difficult decision for us to make. This is helpful. Thanks again!
DeleteShawna, my 14-year old also was on growth hormones to help his NF1 related short stature. I think he was on them close to 3 years. He also is a Little Person -- another completely unrelated spontaneous mutation -- so we've had an interesting run of it. Happy to connect through FB or email to share info. Linda
ReplyDeleteMy almost 10 yr old has suspicious Growth hormone deficiency...She will be 10 in NOV and has NEVER made it on the growth curve charts. She weighs 52 pounds and is about 50 inches tall. At her next well visit they will be testing for this.
ReplyDelete