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My son was diagnosed with x-ald. We are still waiting to get in to neurologists and genetic counseling. I have been reading about the low fat diet and wondering if I should start my son on a low fat diet ( to be on the safe side) and what the diet actually consists of. Does anyone have any suggestions for me until I can speak to his doctor in July and hopefully get in to a nutrionist.
I don't know what the recommended calorie amount would be for a child, but for us adults (which is less) it breaks down like this for anyone not on LO:
1600 calories/day
48 grams of fat (saturated fat not to go over 12 grams)
I'd think your son would need at least 2000 cals/d, but I don't know. I'm sure someone else can 'weigh-in' on that.
The best tool that I was given was the Calorie King book - about $9 and it's updated every year. There's also a website and downloads (you have to subscribe). This book outlines all foods broken down and includes fast and frozen foods. It makes it easy to do daily totals.
It's that nasty little fat that contributes/causes our symptoms to worsen, I can't believe that cutting it down in kids would be detrimental as long as it's done right. Again, I hope that another Mom can give you the suggested calorie and fat amounts.
All my best to you and your family!
How old is your son? You can start to wean him off of peanut butter. That's all I was told to do before my kids were on Lorenzo's Oil. Also, it's a good idea to start gathering low fat recipes. Just to give you an idea about the diet...my son is 4 around 42 pounds and can have 16 total fats and 5 saturated fats a day. My 3 year old is about 32 pounds and can have 13 total fat and 4 saturated fats a day.
My nephew was 10yrs and could 34 grams total fat not sure how that broke down as far as saturated fat. I would get him on that low fat diet asap. I also read that spinach was bad but I have no idea why.
I've learned that it's not what you cook, but how you cook. Learn to cook the same dishes but with little to no fat. Grilled cheese with no-fat margarine spray and no-fat cheese works just fine. McDonald's chicken nuggets have 3 grams of fat per piece. Things like that. Joann is right, you have to figure out how many fat grams he's allowed per day and go from there. My son is 6, 45 pounds, and is allowed 18 grams of fat per day. We have "splurge days" once a month where he can have anything. It helps to make him feel like a normal kid.
Hope this helps!
Thank you all for your input. My son will be 3 in June and weigs about 26 pounds. He started out very little ( 1lb,7oz) so he is still just a tiny little thing. I was wondering about the peanut butter. No peanut butter at all? Thats how i get his meds in him. I guess i will try another route for that. It sounds like we have to take pretty much everything away from them =( I thank all of you for your responses and am going to start looking into low fat recipies and start asap. It so nice to have others like you all to talk to!
Hi there. My 7 year old son was diagnosed with X-ALD in March of this year. In many cases the disease progresses very quickly. Unfortunately by the time he was diagnosed, he no longer qualified for a bone marrow transplant. He is presently on a low fat diet and Lorenzo's Oil / Mustard Oil although most doctors say that this will not help in his case. I noticed that your son is only 3 years old so it is great that you have identified the disease so early. Does your son have any symptoms and/or has he had an MRI yet or has the X-ALD gene just been identified in him and he does not have any symptoms?
Certain fats are necessary for proper development of the brain. Others ("essential fatty acids") can't be produced by the body and must be part of the diet. Yes, it's possible to learn on your own all the nutrition information you need, but because of your son's early age consider consulting a doctor-recommended nutritionist to ensure he's getting the fats his body needs.
Also, as your child grows his tastes and calorie needs will change, and thus his diet will need some fairly regular monitoring and adjustment.
I'm not a counter of calories and fat grams, but my memory is that of all foods, peanuts (nuts/butter/oil) have the highest levels of long chain saturated fats. It's definitely something to avoid. So when the jar is empty just don't buy any more.
For general food preparation for AMN men, olive oil was the recent recommendation by Kim Hollandsworth at Kennedy Krieger. <borken-record>Although I use GTO (a component of Lorenzo's Oil) for all my cooking needs.</borken-record>
Hi Connersdad, I have a brother who is now 38 years old with addisons disease and x-ald but he is asymptomatic, so that is what prompted me to get my son tested. He is still asymptomatic at this time and we still have not yet had our first MRI. ( I really am dredding this day) Iam very sorry to hear about your son. How is he doing at this time? What were his first symptoms? Was he diagnosed with Addisons disease prior to his diagnosis of x-ald? I suppose we can only take one day at a time. I wish the best for you and your family.
My son is not doing very well at all right now as the disease seems to be progressing very quickly. He is the first in our family to have any signs of this terrible disease and was only diagnosed with X-ALD after an MRI. When he was finally diagnosed in March his only symptoms were a slight loss of hearing and a lack of balance and his grades in school and begun to slip. Now he is having vision problems, trouble walking and is slurring his speech. His adrenal levels tested normal last month so no signs of Addisons.
I was asking about symptoms in your son as I was concerned that if he had symptoms you would definitely want to see a doctor much sooner than July. I hope all goes well for you and your son. By the way, whereabouts are you located and have you been in contact at all with Kennedy Krieger in Maryland?
Hello Connersdad, Iam so sorry to hear about your son. I hate this terrible disease. We have to stay stong and hope for the best. As for now, my son is on his meds for his Addisons and is doing great with no symptoms. We live in upstate NY, but if need be we would take a trip to Maryland. I hear that they are the best! Genetics called this week and we have our first appointment on June 5th so that is great that we got in so quickly. Iam wondering if they will decide to put him on the oil before he starts to have symptoms ( if he starts to have them) just to be on the sfe side. We will see , I will keep in touch. Keeping you, Conner and your family in my prayers.
the earlier you can get a bmt the better
put him on ktc mustard oil and aceitylcistein throiugh ive before bmt
please dont wait
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