I am a parent of a child diagnosed with ALD. It was found through the NBS and further tests were done to confirm. It is nice to be a part of community of others going through the same thing. I appreciate all of you who take the time to contribute.
My question is when should the first MRI be done? Our Neurologist just put in an order for a non-contrast MRI but our Genetics team is questioning why as my son is only 13 months. Genetics wants to start MRI's at 24 months. I expected them to start at 18 months based on what I have read. Is there anything wrong with starting now?
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pflores
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My neurologist at the local children's hospital wanted a baseline for my son, so we had our first at 5 months. This is not the general rule, but as a concerned mother I was definitely relieved to know sooner rather than later that his brain was not showing any lesions. The neurologist at Stanford (Dr. Van Heran) starts them at 18 months and has ordered one for us soon. You should definitely bring up your concerns with your doctor and consider the risks of putting your son under general anesthesia.
We just completed the standards of care for neurology and the consensus is to begin MRI between 12-18 months.. So I think it is fine that they are starting now. The next MRI should be a year from the first - followed by every 6 months until the age of 12 with contrast.
I know what you are going through as my son was also diagnosed through newborn screening, but over 2 years ago. It’s very overwhelming, especially when physicians are not on the same page. Elisa is right, since she has the most current information being published by the top specialists for ALD. Elisa and her son, Aiden are also why we are all here and able to monitor our children:). I am beyond grateful. There will be hard emotional days trying to wrap your mind around it all...but as time goes by it becomes just part of your life and you will hopefully like me have a sense of calmness that it’s going to be ok because of these amazing advocates and specialists. Just make sure you choose one of them if you can to atleast view the MRIs. I’m here if you ever want to talk! 💕
I found that you mentioned in another post you had some links to information on diet. I have been researching this heavily along with a friend of mine who happens to have a degree in biochemistry. I would be interested to see what information you have. I would think limiting VLCFA's would help. I also have been researching and reading about supplements and found this to be a very interesting article on Caffeic acid phenethyl ester (CAPE) - Bee Propolis ncbi.nlm.nih.gov/pmc/articl... . What are you thoughts on Lorenzo's Oil? It would seem that if started when a child is asymptomatic it could hold off progression but I am still researching.
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