Thursday, March 12, 2009

Nystagmus

Thank you to everyone who read Goldie's long birth story. I'll try not to leave you hanging much longer. But, I just had to post about today!

Goldie was diagnosed with Nystagmus when she was about 4 months old. Basically, her eyes jerk back and forth and she is unable to focus on anything. Even though the DS "caused" her nystagmus, I feel like the nystagmus has affected Goldie's development more than the DS. It has improved tremendously since she was an infant, but it is always there.

I took her to an ophthalmologist at 4mo, 6mo, and 1 year. She has also had Vision Therapy for the last 14 months. At Goldie's 1 year appointment I had some specific questions about her vision that they were unable or unwilling to answer. I felt that her diagnosis of nystagmus was being trivialized. At one point, the doctor told me "most babies are legally blind anyway". Um, no, not at 12 months. I was told there was no treatment.

I'm basically skeptical of doctors anyway, so I decided to get a second opinion. After months of research and talking to Goldie's VT I made an appoint with a doctor at our children's hospital. He specializes in nystagmus. I don't know why we weren't referred to him sooner, but that's ok.

We saw him today. He gave us what every parent wants, hope. I learned more about Goldie's vision from this doctor in 5 minutes than I have in the last 2 years. He picked up on ways she was compensating that no one had noticed. He explained how treatment will help Goldie and that she is at the perfect age. Seeing him sooner wouldn't have changed anything because children respond better to treatment after they are walking. He said most children with nystagmus are left untreated even the surgery is very similar to the ones used to correct strabismus. Some of the things I learned made me sad. Her vision has probably been much worse than we were led to believe. I've known there was a lot she couldn't see, but I wanted to believe that it wasn't as bad as I thought.

We left with a large book written by one of his adult patients. I started reading it on our way home and already have a list of questions started for when we see him again in 3 months. The woman who wrote the book is from California. She was unable to find anyone to help her, so she flew across the country to meet this dr. I can't tell you how blessed we feel to have him in our "backyard".

8 comments:

Lisa said...

Thank goodness you found this doctor! I'm interested to hear what sort of treatment he recommends.

Loren Stow said...

I am sorry to hear that it was such a struggle to find someone who could help! But at least now there is someone who can, and you found him at the perfect time!
I just don't understand how, in this age of the 'Information Super-Highway', there are people that don't know (or don't care to find out) how to help you!

Wendy P said...

Good for you for being such an advocate for your girl! And how wonderful that it is just the right time and you're in just the right place.

Jennifer said...

I am so glad you found this doctor! What luck that he is so close to you!

SunflowerMom said...

So glad you found a specialist that can help!

Ruby's Mom said...

My 18 yr old son's girlfriend has Nystagmus.I haven't asked her a lot of questions about it because I didn'y want to embarass her.I do know she has trouble seeing well enough at night to drive.She wears glasses to read and she has had surgery but I'm not sure how much it helped but I think she was already a teenager when she had the surgery.We just love her!(There is a pic. of her on my http://cherylsbunch.blogspot.com under My son and his Sweetheart)I was sad to find out her parents had told her she would probably never find a husband!She may have already found him:)

Ruby's Mom said...

I was wrong,my son's girlfriend had her eye surgery when she was 6 She says she had to have it because
her neck was growing wrong from having to tilt her head back to see.

Monica said...

Haven't been on the computer very much the last few days, so I'm a little late on this.....I am so happy that you connected with this Dr. and he is in your area!! I am glad he gave you hope......