My daughter was rushed in January and as made a remarkable recovery they aren’t sure if it is adem or ms ??? Worried sick next appoint is oct and got everything crossed that the white matter as disappeared. When we came out of hospital I changed her diet making sure she was having oily fish and fruit and veg and also gave her vitamins and vitamin d and omega 3 which are supposed 2 help the brain heal …doc also put her on high dose of vit d because her bloods came back low in vit d and we have just carried on giving her a recommended daily dose vit d tablet .
Hello there I would love to email chat my son is 5 now but was diagnosed with Adem at 20months old be nice to talk to other mums
Hi Cassie, for some reason I couldn’t reply to your other post about MOG. It is an antibody seen in some people who have some sort of trans-myelitis disease such as ADEM. It is a relatively new discovery in that much still needs to be learned about it. My granddaughter is MOG negative. Antimog positive patients are at greater risk for relapse. Obviously doesn’t always hold true because she had a relapse in January of last year with a negative result. It stands for MOG stands for Myelin Oligodendrocyte Glycoprotein. I have found that not all doctors are familiar with it. We had to push the neuro to read up and order the test. I don’t have much more information than that. If you have facebook there is an adem group on there that has a lot of info also. Tess
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Thank you for emailing, yeah my son is mog negative no relapse as of yet he is 4 years post Adem, yes I’m on that group it’s so much to take in specially when your trying to stay positive lol
Cassie
Hi my daughter was diagnose with ADEM in April 2016 at 8 she also still suffers with the affects now at 10 we have never gotten any real answer form our doctor’s or hospital who are still involved I’d love to chat and compare story’s Mabry I will find some answers
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Hello all, although this chat has been dormant for a while, Magen (@mimi ) is a new member to our community, and her grand-daughter was diagnosed with ADEM (and has gotten steroid treatment), and would love to learn about ways to support her loved one during her recovery! This thread has been very helpful and positive, and we would love to hear more!
And Magen, please feel free to start your own thread if you have anything you want to ask/share!
-Arjuna from ModSupport
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Seenie here. Another parent arrived this evening, @Priyanka. Can you take a moment to say hello to these parents, who are feeling so alone and desperate to help their children?
If you click on the green "Reply"button, just below, your message will be emailed to them if you include @Priyanka and @mimi somewhere in your post. (One of the cool features of our system.)
Here is an uplifting story for us all… @Pams from Australia joined us a couple of days ago- her son was diagnosed with ADEM when he was 8, but he is now doing quite well at 17! It would be awesome to hear more from you Pam- please feel free to hit the “Reply” button, it would be so nice and refreshing to hear 
-Arjuna from ModSupport
5 posts were split to a new topic: 8 year old needs back surgery
Hello all. As someone who has gone through this experience (of being diagnosed with ADEM and being bed ridden for a short period of time), I can attest that the beginning stages can be worrisome for both the person experiencing it and the family members (especially mother and father). While the waiting and testing phase was happening, is especially scary, since they (the doctors) are trying to determine the problem is. I can assure you that it does get better over time. What got me and my family through this whole ordeal was patience, faith, and the undying love and support from both the medical doctors and my family. I am grateful for everything everyone has and continues to do to help me recover and reintegrate back to my “normal self.” I put quotation marks on the last two words not, that your daughter (or whoever is going through this won’t return back to normal), but that once he/she does recover from this, he/she may come out different. Now what I mean by that (at least from my own personal experience) is he or she will at first have some difficulty in performing the simplest tasks or being in loud and public environments. While the whole thing may seem daunting (which it is at first), just remember to be patient with him or her and encourage him/her to try to slowly get out. The best thing as I have mentioned earlier, is having a great support system. Do not give up hope, faith or whatever you believe in. The point is the person will eventually beat this and everything will get better. Please be patient and everything should work out in the end. Give that person a reason to fight this medical condition and a reason to continue to live another day. After all we need them to get better so they can share their story with the rest of the world. Please feel free to message me through the messaging system on this page or just reply to my comment. May whomever reads this message understand not to give up hope. We are all rooting for you to get better or the family members seeking answers, we are here to help assist you any way that we can. I hope everyone has a wonderful day and that you may receive fantastic news!
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Hi Helen, my son was diagnosed at 8 and is now 11 and still suffers after recovering almost fully! Message if you’d like to chat!
Hello! How is your son doing now?
Hello! How is your son doing now?
He is very lucky compared. He lives almost a completely normal life from about March through about October. During the winter months he suffers symptoms when his immune system acts up which is very often. Symptoms can be as mild as daily headaches and chest pain but as severe as difficulty walking, weakness, balance issues, pain in his back and legs, incontinence and pain urinating. We are only in year three since diagnosis so he is still being monitored yearly with MRIs and we are very hopeful that each year his symptoms improve.
I’m sorry that he’s still experiencing these things during winter months! But wonderful that he is basically living a regular life for most of the year . Do you think it’s because there is more sickness during winter months in general?
Hi all wonderful parents. I am from Sweden and my daughter Livia suffered from Adem back in 2012 feb. This year last september an Mri showed she had changes in the white matter in the corpus callosum. So now after 8 years of having a girl that looks fine but struggles with being very tired and being pretty negative and angry/ sad we will finally meet some neuroexperts to asess her and help her. I have pointed this out to her neurologist and I can still not understand that an Mri isnt mandatory after an episode of Adem.
In 2012 she suffered first loosing her sight and in a second episode she lost everything. I cab still remember the moment a doctor came in and exolained that her brainstem was filled with water and it was critical. First episode she had prednisolone and in the second immunoglobulin. Finally she came back to us.
Livia was 4 when Adem hit her. We never understood why. We struggle everyday with her behaviour at home. She had two shots of Pandemrix vaccine a year before her Adem episode. I really hope we get in contact with that specialist team sometime soon.
I am sorry to hear that @Livia_is_my_daughter, have you been able to get in contact with the specialist team yet? How is Livia doing lately? I was looking at some past threads and there have been some parents who have been in your shoes. Although it may not be of much help, I did a search for the term “behavio” (to cover both the English and American spellings) to look for existing threads related to that, and here is the link to that: https://forum.acutedisseminatedencephalomyelitis.org/search?q=behavio
I hope things work out, and we look forward to hearing back from you regarding Livia!
Best,
Arjuna
Hi all,
Barbara (@Babyblue817 ) from Pennsylvania has joined us! You can find her story here: Scared of the car.
@Babyblue817 it’s relieving and inspiring to hear how far your daughter has come after being unresponsive in the hospital for almost four weeks. It gives so much hope, and I am understanding that she is at a children’s rehab center now? How has she been feeling lately Barbara? I know you mentioned she is anxious to get in the car. Have you been able to work out a strategy for that ? I am tagging you in this thread so your story can get more exposure to to other parents who may have been in the same shoes!
Wishing you the best, and we would love to hear any updates on your daughter’s progress.
Take care,
Arjuna
Hi all. No news yet around speciallist team.
Hang in there all of you.
Dont stop struggleing for your kids.
Love Pernilla
Oh Pernilla, that is taking such a long time. You must be really anxious . Meanwhile, how is Livia doing?
Seenie from ModSupport