First time poster so hopefully I am doing this correctly! Has anyone experienced post ADEM what seems to be a weakened immune system? My daughter, who is now five, was diagnosed in June of last year after an over a month struggle for answers. Now she seems to catch every virus and with even simple colds she will get week long low grade fevers. She also gets post viral symptoms which include lack of appetite, wetting herself, being dazed, lack stamina etc.
Hearing you loud and clear, Gravity!
I’m sure the good people here will share some thoughts with you.
Seenie from Moderator Support
Yes she will have. Try her on a high strength Vitamin C tablet a few times a day.
Also she may no longer feel hunger. I didn’t for about two years post ADEM. Wetting herself? I hate to say that happened to me too. Spinal cord damage related unfortunately. I’d say go to a Neurologist and have her checked over fully, if you haven’t already of course. Drs can refer her to Urology also.
Hope that helps!
Lou x x
Its been2 years since my son was diagnosed and treated…he too is always catching illnesses now… Things get better then they get worse… He still has issues too…like when he is having a flare up (as i call it) he wont eat… Cant use the bathroom… He also still has leg and back issues and severe chronic pain … Not to mention he is suffering from inflammation of his stomach,high blood pressure,knee pain etc… They say itll get better but when… We have been to 5 different dr’s hoping for some kind of relief… They never said he would be like this… They said he would be back to his old self in no time… That never happened… Sometimes i think the dr is lying to us cuz they have no clue to what to do… As for helping ur child i think u should go see another neurologist… Also have them refer u to a urologist too… Just incase…
My daughter, 32, diagnosed end of 2015, has bladder frequency problems and always wears a pad now. She sees the bladder nurse who has put her on a tablet (tolterodine) which lines the bladder and desensitises but she’s only been on it for 2 weeks and nothing much happening as yet. All down to nerve damage from the ADEM she is told. And she is still very tired at the end of the day and retires about 8-9pm most nights and watches her fatigue very carefully. Still taking the omega 3/6 (Eskimo-3 Brainsharp) which also has Vit D. And as Sunshine Lou mentioned before, she is now taking Biotin from health shop, as well as Sambucol capsules containing Vit C and Zinc to protect her immune system. Interesting watching BBC programes on BBC I player about food with James Wong the herbalist. Mentioning the 5 amino acids needed and interesting Googling the foods containing the 5 aminos. Have always tried getting daughter to eat plain bio yoghurt and one program showed people living in Bulgarian mountains making their own yoghurt and living to a 100 !
Thank you so much everyone for your feedback. I am sorry for everyone’s struggles but I do find comfort in knowing I/my daughter are not alone. I will definitely continue with immune supplements, will try to look into other ones I could be using. Do most doctors seem to just see this as a result of the lesions and not much can be done? Right now my daughter got over yet another fever from another cold and has been a bit manic, wetting herself etc. My biggest concern is her being in full time school in six months and how that will even be possible… Has anyone received a 504/IEP for their children or disability for adults who cant work? We have an appointment with Rheumatology and NeuroImmunology both at Children’s Hospital in Boston - it was where she was treated - supposedly one of the best in the country so trying to stick with them but I will say they discharged initially (another hospital discharged her previously) and she went 6 weeks without treatment and I do blame the doctor who discharged her for the extent of her issues. We may try Mass General if this keeps us. It is so hard to see her suffer.
Unfortunately ADEM by its nature begins with a compromised immune system, and my neurologist explained that the brain is in charge of sending healing cells to the body… so… it’s already busy trying to exist (breathing, heart beating, etc.) and now it’s trying to heal itself. It’ll take awhile.
Talk to your neurologist about vitamins and supplements to help. I’m an adult (so dosage would be different), but I take a good multi-vitamin, Vitamin Bcomplex, Vitamin D, Vitamin E, Biotin and ALA (the last two I found in research - supposed to be good to help the brain and the body’s cells).
Also avoid ALL SUGARS! Sugar will weaken the immune system. I’ve found post-ADEM that a sugar binge (which could be a few cookies or a large Coke) will result in Shingles (for me - which I was already prone to…) which tells me that it affects my immune system more now.
Hang in there.
Abby just turned 5 as well and was diagnosed with adem last October. Currently she is getting over a week with a 104 temp. We had to cancel her birthday party this weekend. very sad. Two weeks earlier, she went through a week with a high temp as well. Her biggest symptom is loss of bladder control. She does better at preschool when we put a “sticker” in her underware. (a pad). Reading the other post, we are going to try Sambucol as well. We will pray for your daughter.
2 years later and my little boy gets everything and anything!! Scares the life out of me as Henri’s ADEM was triggered by Tonsilitis
As I am not new here, so some of you know my fight for my son who is 12 now and was diagnosed a year and a half ago. onset his symptoms came across as breathing problems then the tremors they thought were panic attacks. quickly it was hallucinations. looking like encephalitis. then they found the mass, biopsy showed ADEM. confirmed with 2 other hospitals. IV steroids shrunk the mass and claimed 'HE IS CURED". His Non EEG seizures continue constantly. some are accompanied with falling to the floor. gurgling, foam at the mouth then convulsions. rapid eye blinking with his mouth movement. he can be distracted sometimes like when he has a friend over but then he gives me a look and I know the friend has to go and we wait for his “episode” to end. this is daily. 3 different neurologist all confirm ADEM is not an issue and needs a psychiatrist. psychiatrist says he needs a neurologist. I wasn’t told ANYTHING. they all just left us. I have one more appointment to see a local neurologist who deals with epilepsy. then that’s It I have no more resources, strength or money as I have been out of work to take care of him. yes I am lucky as lesion was on fight frontal lobe and not on spine (don’t know what POD is?)