Acute Disseminated Encephalomyelitis (ADEM) Support Group

Baby shark do do do do do do

Hey peeps,

Hope all is well, getting well or at least less cruddy! I’m just posting this to remind those demylinized group members to eat your fishies!

I have dove down a lot of rabbit holes to get me to where i am today. Diet holes, exercise holes, mental health holes (darn things won’t go away) and self improvement holes. Holes that led to dead ends, dragons and rooms full of gold (metaphorical). Each hole, be it gains or losses, helped me find what i needed. Fish. Well to put it in a more fun, lighthearted and silly way, i needed to become a baby shark. The less fun, more clinical way, Get your O-MEGA 3s. When you learn about Myelin and how it is formed, what is comprised of, what it does and how to get more, you will too eat fishies! Nom Nom Nom. Or, you know, take a pill. Best part is, even if you do not believe me, what’s the worst that could happen? My doctor never told me to eat fish. Actually nobody told me to and half of my family loathes the smell of that stuff. But i have been taking 1000 mg of that stuff (at least) a day in pill form.

Please note i do not want anyone to do what i have done in the name of science… because my doctor would have killed me, and most can’t do it without a ton of patience and discipline. Like my diet… which my big fat Italian family think is the same as starving myself…you know, because eating and not eating at all are the same thing. Anywho, ask your Doc if you are unsure.

Do you eat fishies?

Do you take O-MEGA 3 pills?

Lets all have a chat about getting that silly stuff back, called Myelin.

Believe me, i tried cookies and lasagna…

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We all need to be Baby Sharks…Omega 3 and fish are the way to go!

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Has anyone given Omega 3 pills to kids? My son is 10 with ADEM and having a tough time lately

Omega 3 is Fish Oil and if you research it on the internet, there are all kinds of articles about the benefits of Omega 3. I use it; but you should check first with your son’s physician.

Helloo Grim, Thanks for the information…I’ll certainly give it a try. Can you elaborate a little more on how you feel eating all those fishies and what they are doing for you-in regards to the Myelin production in the body? I’ve had ADEM for five years now- and nowhere near normal or nowhere near how I was. And until now I have been uninterested in educating myself about ADEM. Is all this “fish business” therapeutic to help one deal with ADEM…or are these “fishies” the answer to our problem? The cure… the ADEM killer? In the last 120 days my legs, my mobility or ability to walk has declined drastically. I’m in my wheelchair now more than ever … so your darn right I"m going to get me some fishies first thing tomorrow. thanks and take care.

sisto

Thanks for your response Lynn, will do!

Yo Yo Yo Sisto,

It is key to note what Myelin is. An insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This “myelin” sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells.

Now, as we have a demyelinating issue… or should i say, we had an episode, the (All, some, most or just blotches here and there) nerves are less efficient at doing that which we built up to do so well over time. I had to fight to do simple math and motor functions. Sadly i beat the living daylights out of myself every day till simplicity was yet again simple. Note; if a Doc asks me to countdown by 7 (or other uneven number) from 100 i want to hurt them. The research that i have done states repetition in action or recall, forces the nerves usage to become more and more myelinated.

Now, The “sheath” is a composition of protein, fat and other trace minerals. With the ingestion of said items and repetition, we cause not only the building blocks to be available but also tell our body to fix the damage.

It is not easy peasy lemon squeezy. I had to research what happened to me, what does what, what is made of what, and what causes what. Then, i made a simple thought map. I concluded that i was (in some aspects) a baby. Sadly babies are given a necessary dose of building blocks every day till they do not need to be given their mothers milk anymore and can ingest more complex things. So remembering that in the hospital i craved meat, milk and cheese like no tomorrow, i saw my body was actually asking for what it was missing.

So in my case; A) I had Myelin damage and B) the medication i was on to stop it from killing me, caused muscle wasting. I am nowhere near the strength or muscle mass i was prior the episode but i ate more and more meat after some other fun facts were researched.

I cannot state what your case is, all i can do is give a hopeful outlook at something. You might have muscle wasting or atrophy, your body might not be getting those quick signals for motor function recall. You may have to kick yourself in the butt and just act like a baby, stumbling and falling until your brain puts the pieces together (i hit my head on the toilet in the hospital because i didn’t want help or use a diaper when i needed to pee).

My friend, i am sorry i do not have the clear cut, blanket solution. The nuance to the solution is vast, complex and perplexing. If you are willing to take a leap of faith then try, nice and slow, weighing the pros and cons. I did because i had more to lose at the start. Now not so much, as i lost a lot along the way, but far less then if i was to just give up. And i must emphasise the slow progression, because i am willing to be a hypocrite for others safety. “A journey of a thousand miles begins with a single step”.

Grim

Hey cdelouise,

Can he eat things like walnuts, chia seeds or flax? Fun things with O-MEGA 3 that can be put in cereal or oatmeal? I was a weird kid growing up so i had few things i would not try. If he doesn’t eat fish and gags on pills, it might be another option as most places have a baking section. Oh and my first job out of the hospital was a place called Freshii, we made Chia pudding (though i added cinnamon to mine) so take a look and see if a pudding / yogurt medium may entice him… and endorphins never hurt in this case.

Thank you so much, these are great suggestions!