So, my daughter has a nutritionist looking at the diet we have Myles on to make sure we are doing the best we can for him. I really think the higher dose of Vitamin A was making more of a difference and can't seem to get enough food based beta-carotene in him to make up for lowering the dosage. We go back to CVI tomorrow and will see how he does there, that should give me a better idea of how much of a difference there is in the lower dosage. It just seems as though he is not using his eyes as much this week. It's still better than before the diet, just not as good as when he was on a higher dose. We also added ExFuze seven today. My daughter has been taking it and thinks it will help so we will see.
Went to CVI yesterday and Myles wore his glasses the whole time. It was like a whole new world to him and we have been a lot. He even saw a snack on another child's plate that he wanted. His teacher said she has a lot of parents who believe their child's vision has improved, when in reality they have just learned to use what vision they have more effectively. So, I guess I'll say again, it could just all be a coincidence and not the diet, but we will keep it up and see what happens.
So about three weeks ago my mother-in-law called me and said she had heard a doctor on the radio talking about having a son with Leber's who lives here and who's son has been admitted into one of our private schools that has never had visually impaired students before. The reason this was, she said on the radio, was that though her son had been born blind, she had put him on this diet and he now has vision. My mother-in-law was very excited and I said I would try to reach this doctor. I called her office and left a message and sent her an email. Nothing, never heard from her. So, I went back and listened to the recording, believing that my mother-in-law must have had it wrong. After all, Leber's is very rare. Two people in the same town with the same diagnosis is unusual. Leber's is a congenital birth defect and a progressively destructive disorder so it was also hard for me to believe that a diet could change this. I was skeptical to say the least but as my mother-in-law said, "It's only a diet, how could it hurt to try?". So, after listening to the recorded program and finding out that she did indeed say Leber's and use the words "blind at birth", I decided I needed to figure out what kind of diet it was. She mentioned a few things like vitamins and no processed foods and I already make most of what Myles eats so I started doing my own research. I decided to put Myles on a diet used for Macular Degeneration. It is similar in many ways to Leber's and I remembered one of the doctors talking about a relationship between the two. I will post the diet after he has been on it for a little longer and after I have tweaked it a bit more. I would like to work with a doctor on it also. I am just having trouble figuring out who to go to. To make a long story shorter, I have had him on "the diet" for 3 weeks and it appears to be working. Unfortunately, I have apparently been giving him higher than the recommended limit of vitamin A though, so this weekend I cut him back to 2 multi-vitamins instead of the 3 it recommends on the bottle until I can get with a doctor and find out what is safe as an UL for his weight and perhaps, his condition. For the most part it is a simple healthy eating plan that focuses on specific vitamins that support vision and have been shown to slow the progression of Macular degeneration. These vitamins are A,D,E,K, B and C. Also Lutein, Omegas, DHA and Licopene. So, I have been giving him Yummi Bears Gummy Vitamins. The label recommends 3 per day for a 2 yrs and older which provides 2500IU per day of vitamin A. The problem is that the RDA is 2000IU/daily for a 2 year old up to 27 lbs,(Myles weighs 31 lbs) it goes up at age 4 to 3000IU/daily so what I have been giving him may be fine, I am just not taking a chance on giving him excess until I know it's ok. I have been giving him one packet per day(3-4 gummy vits) Gummy Omegalicious vitamins, these contain DHA, EPA, C, and Lycopene. I also started using Ovalteen(there is also Vitamin A in Ovalteen) in his milk instead of Hershy's syrup. He will not drink plain milk and Hershy's is made with high fructose corn syrup. From what I have read this can prevent the body from absorbing the nutrients properly because it causes them to be processed too quickly. I also use 1 tbsp of blue agave inulin in his milk to create a "good environment" for vitamin absorption. It is a pro/prebiotic. He eats yogurt every morning also. Acidophiles feeds off of the inulin aids in digestion. Everything else is food based. A balanced diet based on little to no processed foods and is somewhat higher in fat than the RDA but the fats are based on the nutrients needed for brain, eye and nerve development.
And it really seems to be working. This is what we have noticed so far:
When Myles had the ERG is was determined that his retina was only working at about 2%. When he was evaluated it appeared that he was only seeing shapes, a few colors on a contrasting background, and he still has some light perception. He can see more or less based on the amount of light there is and the type of light. For example I have skylights and lots of windows without curtains. In the early morning he has trouble maneuvering and finding things and tends to eat blindly. What I mean by this is that he uses his hands and stares at the lights while he eats. He never looks at the food. Later in the day, on a clear day, he seems to see the food more and will attempt to use a spoon. He has never looked at photos, never wanting anything to do with books, etc. If he drops something he has a very short range of vision and can only find it within this range or by feel.
So these are the things we have noticed so far, which may seem very small and could be coincidental but we don't believe that they are.
1) on Monday he picked up a small (the size of a dime) piece of cereal that fell on the floor. There is a contrast but it was not in a well lit area and he has never been able to do this before. Then he did it again. Yes, I am sure he heard it fall, and it is possible he didn't see it but, he cocked his head as if finding a null point and seemed to be looking at it. I didn't say anything to any one about this. I wanted to wait and see if anyone else noticed anything different. 2) on Tuesday my husband noticed that he seemed to be seeing things in the kitchen that he usually never pays attention to and it was early morning, 7:00 am and not very well lit. Also he started looking at the computer screen again. He used to love the computer and would watch slide shows I made for him over and over again, then as his vision deteriorated or seemed to deteriorate, he lost interest, now he is really looking at it again. 3) on Wed. he grabbed and dropped a glass of water that was "out of his normal range of vision". He did this 3 more times all in different places, with things and in areas that he previously seemed unable to see. He took pictures down off the book shelf and sat and looked at them. He opened books and looked at the pages. He reached for rolls of blue ribbon from the center of a higher table and then brought them up to his face to see them more closely. Previously he seemed to not be able to see blue. He found the small pebbles in a pot of bamboo on a table. 4) on Thursday he found a book that I've tried to show him many times before and he had minimal interest in it. It is a braille book with textures and black and white drawings on bright yellow paper. He sat in my lap and looked at it over and over for an hour. Seriously, for an hour. At home he found his glasses in his room, he hasn't worn them for about 6 months, not since the doctor said they really weren't doing anything for him and he wouldn't keep them on and we kept having to get new lenses because he would eat them. He put them on and wore them all night and cried when Aubrey took them off. He looked at a photo album for the first time. 5) on Friday he wore his glasses all morning. He continued finding, touching and exploring new things around the house. He sat in my lap for over an hour looking at the same book as the day before. I finally had to try to get him to do something else because his nystagmus was bothering him because his eyes were tired. I had previously taught him to put coins in a bank by feeling the opening with one hand and putting it in with the other. Today he used one hand and seemed to see the opening.
I could keep going and I know it could be all just a coincidence. But I started thinking about the fact that most of these nutrients he was getting while Aubrey was nursing him, then she stopped and he has seemed to actually loose vision over the last 8 months. Had I known there was a chance that it could help him keep what vision he had or postpone some of the degeneration I would have been doing this all along. But I had no idea. So I will keep doing as I am doing for now, talk to the doctors and keep posting with my fingers crossed. Because if he could just keep some of his vision there is a chance he will have the right mutated gene and be eligible for gene therapy or that they will be able to do it for other genes in the future and if we can keep his eyes healthy maybe he will be a candidate. In the meantime, as long as we are careful, it can't hurt.
This is a blog about my grandson Myles who has a rare genetic disorder called Leber's Congenital Amaurosis. It is so rare there are said to be only 3000 people who have the disease. It is a degenerative disorder that causes blindness and depending on which gene is effected a myriad of other problems. When Myles was diagnosed eight months ago we immediately began researching the disease. We had a hard time finding much other than research on gene therapy, the causes, and definition of the disease. I will post links here for other parents or anyone interested in finding out more about the disease. This site is for the most part an outlet for me and maybe a help to anyone else out there who has a child or grandchild suffering from this or similar disorders. It will be about the things we are trying to do for him and how he progresses as time goes on.