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My boys ages 2 and 4, were diagnosed with X-ALD last week. My 2 month old might have it too. I am very concerned what the future holds for them. We are still trying to set up an appt. in Baltimore. I want to start them on the diet. Can someone tell me more about it? Also, are the doctors able to diagnose what type of ALD they have before they show symptoms?
My son is 4 and his diet is limited to 18 grams of fat a day/5 saturated fats/1200 calories. The thing is, I wouldn't start them on the diet yet because they will need the oil to compensate for the lack of fat and calories in their diet. You could start getting them in the habit of eating healthier foods such as frozen grapes and blueberries (my son's favorite). Make sure they take a multi-vitamin daily. You are at the right place. I know it's scary right now but stay in this moment and realize that God isn't going to give you more than you can handle. Thank goodness you are finding answers now and not before its too late. That's a blessing in itself. How soon will you get out to Maryland?
I know how hard it is to handle many things at the same time. But keep going you are at the correct road. Baltimore is the perfect site to be because they have all the experience with leucodystrophies and you are just in the exact time. Keep going and try to get all the help you can and take time for yourself.
My story is a little bit different because I began knowing about the leucod. in 1989 and there was not such information as today and I never knew which kind of leucodystrophy my kids had. I had 2 boys with unknown leucodystrophy and the elder died at the age of 12 and the smaller one when he was 17.
We loved them a lot and gave them all they needed and although sometimes you feel tired with all the work to be done with a handicapped it is rewarding to see them with a smile. You are on time with the diagnosis and I`m sure you are going to receive the best from doctors, from the ULF and the spiritual support you´ll need. Your kids will be doing O.K. as you can get them on the diet... I don´t know much about the ADL but I just want to tell you that you are on time and on the correct place and if I can help when you´re filling down it will be a pleasure to help.
thank you for your responses. we will be in maryland in january or february. VIVA, how are you doing? i'd like to hear more about your story. if you're willing to share. my email is tygrout@yahoo.com
Good luck to you. Make sure you stay with Kim and Dr. Raymond at Johns hopkins. They are the best. I was just there myself for testing and have been going to them since 1992 with my 2 boys for ALD. My oldest died at age of 10 1/2 and my second is Asymptomatic at present with adrenal insufficiency. He is now 25 and doing great. Any help that I can be just let me know. coco1252@aol.com
my youngest son had a bone marrow transplant in minneapolis at childrens late october 2008 with his older brother as donor. he was very far advanced and has regressed alot but we continue to hope for good things for the future.
i have a group on yahoo, ALDkids
my email is marinemomkerry@gmail.com
u of minnesota at minneapolis is the premier place for x-ald tx. they do tons of them
KKI is great for research and dx but i would go to MN if i was any of you, thats the only place that gave us hope
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