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By: Rhonda
They kept her there for 3 weeks. Gave her glucose and in a few mins she was fine, laughing and playing. They spent the 3 weeks trying to figure out what happened and why she had the ceasure. They even put her on phenabarbitol. Then they let her go home. About 3 days later, I left her with my sister and I went to the bank, I was gone a little over 45 mins. When I came home I went to the bed room to pick her up, she was as limp as a dish rag. Her face and mouth were blue. When I grabbed her out of the crib she sucked in a big breath of air then stopped breathing. I paniced! We were taken to Children's hospital where she stayed this time for 3-4 months. Dr. Rohn was seeing another patient in neo-natal intensive care, when he walked by her crib and saw her eyes. He called her doctor and asked to take over the case. He diagnosed her SOD and we've been with him ever since.
Through the years I was told, "she won't walk, she won't read, she won't do this or that". Amanda was profiled in Children's Hospital of the Kings Daughters monthly magazine in an article about growth hormone defenicy when she was about five years old. Now she's an honor student and wants to be a writer when she grows up. We found out when she was about 2 years old that she was blind in one eye. I noticed that when we played pick-a-boo she only covered one eye, even tho I covered two. I brought this to the attention of her Dr. Rohn. He scheduled her for a visit with an eye doctor with the Lion's Eye Center here in Norfolk. They determinded that she was completely blind in her right eye and had particial vision in her left. No one really told me about SOD, I thought her main problem was her Growth Hormone Def, Dr. Rohn had always treated her for that and no one ever put an emphasis on the sight problems.
I went up to donate blood and found out about some disorders that were associated with growth hormone, when I started investigating I found that alot of her meds could cause blindness, which I found odd that a doctor would give her a med that would cause blindness in a child that is already blind in one eye. I found this page and list when I was told that SOD children are generally totally blind. This is one reason I joined here, I'm concerned about my daughter losing the rest of her sight and if I should start with braille classes and so on. I've talked with her home health nurse who says, nah don't start, then with different eye doctors that say, don't do it, then with parents of blind children that say do it now, I'm really at a loss of what to do now. We do know that she's losing her sight, we don't know how much, it's still 20/20 with correction. But throught all this she still has a good attitude about life. She gets her shots everyday and takes her meds, but over all she's doing really great. She even wrote her own web page!!!
