Are PT first noticed it when Madilyn was around 8 months old. We were then referred to a Ophthalmologist by our Neuromuscular doctor who also noticed the nystagmus. The eye doctor today confirmed she has it, and may be more noticeable when she is tired. He then went on to say, he wants to do a more thorough exam under anesthesia to look for a cause. The eye doctor will also be looking at her previous MRI to see if there is something in the brain causing the nystagmus. He did reassure us that she does not have Tay sachs disease which is one disease are Genetic doctor mentioned, but was ruled out today by the eye doctor.
Nystagmus is usually a benign condition, and not progressive. There is no cure, but its symptoms can be diminished with spectacles or contact lenses. The eye doctor thinks her nystagmus is all part of the bigger problem of what is going on with Madilyn. We are scheduled for the anesthesia eye exam in April. Again another test, another day, and still no definite diagnosis.
Madilyn in the chair at the eye doctors!
2 comments:
I don't know you, My friend on facebook posted the link and I clicked on it. I just want to tell you how darling Madilyn is and how inspiring you are. My son is over 2 1/2 years old and he still isn't talking. Everything seemed fine in the beginning but after months of speech therapy with no progression we really began to worry. After a few diagnosis' leading to an MRI we discovered he has a neurological development disorder. It's called periventricular nodular heterotopia...what?! Well, it basically means that his brain developed wrong and there is brain matter in the wrong place and it is stealing the messages the brain is trying to send to his speech center. They can't do anything, they don't know if he will ever learn to talk or if he will need to do sign language the rest of his life. There is a lot more to it, but I just wanted to say this helped me today. I have the same moments watching 1 and 2 years talk to thier mom's and tell them what they want or need. It is heartbreaking. No one is judging you quite the opposite...we are admiring you. I thought this week about starting a blog about my son and now I think I just might! Thanks again for sharing with me.
Jaime,
I am sorry. It seems it is one thing after another for sweet Madilyn. Hope you are hanging in there o.k. Let me know if you ever need help with babysitting Lexi. As always, you are in my prayers.
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