Acute Disseminated Encephalomyelitis (ADEM) Support Group

Nutrition & Diet?

I've noticed many people mention they've changed their diet - how? What have you added and eliminated? Thanks.

First of all, I do have an advantage. My husband is a physician and nutritionist, in addition to being and older athlete. I simply let him put me on whole list of vitamins and just cut all the garbage out of my diet, which wasn't bad, but I stopped cheating. No processed food, cut most of the sugar out and we have always tried to avoid foods with lots of chemicals. Most key chemicals would be to avoid any products with Partially hydrated oils and Propylene Glycol (which can be difficult). Read all labels. Any questions, feel free to ask.

Ltnn

Lots of fish oil and Cq10.

Yes for two. I'm not intentionally trying to sell you anything, but if you would like I can send you my our Nutritional FB and/or email or vitamin price list. The one good thing about my husband is that you can contact him and get real a person for advice. He has had his vitamin line in the 1980. Even though I'm still dealing with symptoms in my hands, compared to where I was...I doing 100% better. Also, if it weren't for him, the hospital (well known one) would have labeled me with MS.

Lynn

What is Cq10? thank you!

bchap said:

Lots of fish oil and Cq10.

Lynn, I am very interested in knowing what supplements to give my 14 y.o. son. He had an extreme acute case of ADEM - Mott Children's in Ann Arbor neurosurgeon there said he'd never seen a worse MRI. (he didn't have surgery but the neurosurgeon consulted on the case.) They were gratified he's made the recovery he has but he still has deficits (especially social type - in social settings - am wondering if that will get better. He's more awkward with friends and in conversation. More immature, I guess. Not terrible, but not at all where he was before. Then also school focus) ANyway, I know he should have omega 3's but how much? I ordered fermented cod liver oil because someone said it was the best and (it could have just been a couple bad days and coincidental) but he seemed slower and foggier for a couple days, so I quit that and went back to Algal DHA. I also give Vitamin B but would truly appreciate a nutritionist familiar with ADEM help me out!! How can we get in contact? thank you!

Lynn said:

Yes for two. I'm not intentionally trying to sell you anything, but if you would like I can send you my our Nutritional FB and/or email or vitamin price list. The one good thing about my husband is that you can contact him and get real a person for advice. He has had his vitamin line in the 1980. Even though I'm still dealing with symptoms in my hands, compared to where I was...I doing 100% better. Also, if it weren't for him, the hospital (well known one) would have labeled me with MS.

Lynn

Greta has had a truly remarkable recovery, compared to many stories I've seen on here and heard from folks I've interacted with. We know there were many answered prayers as well as her diet that had something to do with this. Greta eats a vegetarian diet, with the few dairy products being organic as much as possible. "Junk foods" are quite limited; she is still a kid after all. Carbonated beverages are quite limited as well.

Processed food has got to be one of the worst things we do to ourselves.

Lynn said:

First of all, I do have an advantage. My husband is a physician and nutritionist, in addition to being and older athlete. I simply let him put me on whole list of vitamins and just cut all the garbage out of my diet, which wasn't bad, but I stopped cheating. No processed food, cut most of the sugar out and we have always tried to avoid foods with lots of chemicals. Most key chemicals would be to avoid any products with Partially hydrated oils and Propylene Glycol (which can be difficult). Read all labels. Any questions, feel free to ask.

Ltnn

Greta's mom, I'm so glad to hear that Greta is doing well. Yes, a healthy diet helps the body repair itself.

I can't eat gluten, officially diagnosed 2 years post event. Immediate improvement in symptoms. Now have to eliminate milk. ARGH! It seems like there is nothing left to eat. Not really but this is not fair.

Deborah

The adjustment period is the hardest, Deborah, but I hope it will get easier for you. Bakeries are probably not the best place to be. There is some wonderful coconut milk based ice cream that tastes as good or better than the real thing to me, and you can make lattes or cappuccino with unsweetened almond milk, which taste just as good as Starbucks.

Hi @LauraK and others, this thread is quite old but I thought it would be interesting to introduce one of our newer members, @Vikkij, who has a 6 year old son living with ADEM (diagnosed when he was just 2, but he has been feeling better as of late thankfully!). She is working through the GAPS diet, and as such, I figured it would be great to continue the conversation on nutrition and diet when fighting ADEM!

-Arjuna from ModSupport

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Hi everyone, I’ve been off this site for awhile - my apologies. Good news that I’ve had more energy so I’ve been doing things away from the computer more.

I worked through the AUTO IMMUNE PROTOCOL which is a strict diet that assesses the effects of individual things on your body. It turns out that WHEAT is a bad one for me - it makes my brain foggy! I mean, the ADEM did it first but now wheat makes it worse. Since I gave up wheat (and other things like paprika, pepper, etc) in April, my energy and productivity has TRIPLED! :open_mouth:

The AIP will show different things for different people. I suggest asking your doctor to find a nutritionist for you to talk to. I ended up going outpatient to one in the bariatric? department.

Basically you cut back to fruits, vegs and meats cooked without any oils or seasonings. You do that for a week or two until you see no general symptoms. Then you try a tiny bit of ONE THING one day, if no effects, then a bit more of that the next day then more the next. If not effect, then that one thing can be added to the diet. You do this slowly to let your body adjust and mark the side effects. I have different effects from different foods.

The auto immune protocol is an easy way (relatively unless you love food like I do) to assess foods. I was amazed the difference wheat made! But I’ve since found some pasta made with cauliflower and lentils, wheat-free bread and crackers and a website called www.downshiftology.com which has great recipes.

Good luck. Laura

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So good to hear from you! I’m sure @Vikkij will be interested in your experience. Obviously, it may not work for others, but just the fact that it worked for YOU is worth celebrating, isn’t it?

Seenie from ModSupport

Absolutely! But I will tell you that I was advised about the Auto Immune Protocol by a woman with a traumatic brain injury (TBI) from playing Roller Derby (it’s a far better story than ADEM!) and she’s had a full recovery if she stays on her limited diet.

I am working with my personal doctors on treating my ADEM like a TBI - even though it was internally created, it has many of the same symptoms.

I would also recommend talking to your neurologist and primary doctors about EVERY weird thing you’re experiencing, from trouble going to the bathroom (or too little control), to having sex to dropping things to memory and cognitive issues. i found my current neurologist knew next to nothing about ADEM, but he sent me to various physical and cognitive therapists to work on all the issues, and it’s been amazing.

I wish everyone the best. I know this is an individual journey for each of us, but any thing we can try (especially the non-drug kind) is worth it!

Laura