Child with Nystagmus, Crosseye and Many Developmental Delays.

I had a very good friend in college that had nystagmus. (The consensus was that it was because her mother smoked when she was pregnant with her, although I'm not sure if that was ever proven or not?) She was VERY bright and maintained a high GPA. The only real difference between her and other college kids (aside from her shaking eyes) was that she was unable to drive until much later. She did eventually (in her mid-20s) get her DL.

Don't give up! My friend is 35 and successful. It sounds like you are doing everything possible for your daughter and since it's working, there's good reason to be optimistic.

J.,
Your story touched my heart so much. You have been through so much! I wish I had some concrete advice for you....
A friend of mine has a son who is severely cross eyed. She brings him to a craniosacral therapist and it is slowly helping. Also, I would like to recommend Nordic Naturals fish oils for her constipation. We get the kids caps and I slice one open for my infant daughter and squirt it in her mouth. It also helps with brain developement. I am in no way suggesting that it will reverse her condition but I do believe it would help her. I work with adults with developemental delays and the results are wonderful.
I don't know what your faith is and I don't want to offend, but hard things happened to our son when he was born and I thought that God had forgotten me. I just want you to know that God knows your every need and He has not forgotten you. I pray that you find many solutions to your daughter's difficulties and that you and your hubby would have such a strong support in each other.
You are doing a great job!!!!!
-Anne

I have not heard of this, but am wondering if you have ever considered taking her to a chiropractor. It sounds like there is some kind of imbalance going on. Good luck!

I have a 1 year old that has a nystagmus, but he has been diagnosed with Leber's Congenital Amaurosis. He also has been seeing someone from Heartland Area Education (we are from Ames, IA but they most likely have a similar program in your area) from the time he was 4 months old. They have done a wonderful job giving us "homework" for his developmental delays and help to keep him on track. I don't know what all you have done for medical testing, but if your doctor hasn't found something by now, you may want to consider a new doctor. In the early stages I found the internet to be helpful. There are a limited few medical problems associated with nystagmus, I don't know if you have researched that.
I can relate to the problems with your husband. It has also been difficult for us. We also are just starting to accept and grieve our loss for what we hoped and dreamed for our little boy and what will be. I wish I could be more comfort, but we are in the same stage as you and it is still very hard and I often find myself angry that this happened. I really wish the best for you and hope you find your answers you need.

I'm sorry I don't have any personal experience with the issues that you are dealing with, but have you looked into vision therapy at all/ At this age I don't know if there is much or anything that can be done, but you may want to look into it. Vision Therapy center has a website www.aboutvisiontherapy.com they may me able to help. Unfortunetly insurance doesn't always cover the treatment, but it may be an option for you.

Good luck to you and I hope you find some answers to your questions.

Hi J.!
I have one of those girls! My DD is deaf, Blind in left eye-legally blind in right, developmentally delayed (she is 4yrs old in some areas and older in others) mild CP, and few other issues. When she was little she was patched for cross eye (till found out allergic to patches)had first cateract surgeries at 9 and 10 months. her nystagmus cleared up when she gain more vision fortunatly, and about age 5 had surgery for cross eye.
First off remember Dr's are great but usually not sure about anything and will give you worse case senarios usually. With my daughter at first i was told she would probly not survive, then she would be a vegtable. So i rarely take Docs word for gospel. LOL! We went through it all being told no, she won't sit up, she won't walk , etc. I hated Dr's and being told no! But the good news is my Daughter is now 30 years old andlives independently with part time staff and family support. She will never live totally independent but does really well in her situation. I had an Aunt who helped raise me and taught me not to raise her handicapped and i took her advise to heart, and see this as the reason she has done as well as she has.
Follow your Gut! If it don't feel right to you don't go that direction. Expect her to do things encourage her to do all she can, gently push her at all times. You will be rewarded in the end, even though the end is a long time off.
We have been very lucky She has been healthy, had many small health issues, as well as ones that seem large at the time and later aren't. She didn't walk till she was over 3, and didn't ever crawl! She was a roller. She has been put on meds last several years now because she has some behavioral and psycologiacal issues, but that all tends to come from her being a Ruebella baby and other issues that caused her problems. I just want to tell to hang in there and keep going she will thrive and bring lots of love and joy to your family! Hugs and support all around you! P.