Any experience with Acute Disseminated Encephalomyelitis?

  1. any experience with acute disseminated encephalomyelitis?

    does anyone have any experience with "adem"....acute disseminated encephalomyelitis.........especially in small children?

    my youngest grandchild.........two year old in the hospital and was just diagnosed with adem. she has been sick with stomach flu since last friday, wouldn't eat or drink anything, listless, then on sunday had two tonic seizures before being transferred from the military hospital to a children's hospital in missouri. an mri was done which showed she has lesions at the base of the brainstem, and the sheath has been worn away. the doctors feel the seizures caused the adem.

    her walk is wobbly, so the doctors are certain it is the adem that is responsible for that. they have started her on a high dose of iv steroids every eight hours which she will get for three to five days. she is eating now, but not drinking a whole lot. they are poking her little fingers every 8 hours for blood sugars, and doing frequent checks on her blood pressure as these are two things that get out of wack with such high doses of steroids. she will receive physical therapy as well for some time to strengthen her. other test are also being done.

    if anyone has any specific experience with adem, please share it with me. prayers are appreciated as well. thanks everyone!
    Last edit by live4today on Mar 25, '05 : Reason: Correction on how often fingersticks are done.
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    About live4today

    Joined: Sep '01; Posts: 16,608; Likes: 677


  3. by   kids
    Oh Renee, I am so sorry to hear about your grandbaby.

    I have no experience with the illness and there doesn't appear to be a lot of information out there about it but what I did find indicates a promising prognosis with early detection & treatment:
  4. by   Jolie
    My prayers to you and your precious granddaughter. How fragile the gift of health is!
  5. by   live4today
    Thank you both for your prayers and well wishes for my granddaughter.

    My daughter told me last night that the nurses were only poking her little fingers for blood sugar checks every eight hours after each dose of steroid treatment. I was so glad to hear this since I thought every two hours was extreme, and she's a very tiny thing to start with.

    Her blood sugars are up to 150 this morning with a systolic blood pressure of 120. It fluctuates due to the medication. Instead of waiting for the steroid treatment to be completed, the neurologist went ahead and started the physical therapy for her yesterday. My daughter and son in law work with her as well. My daughter said the baby took a few more steps than she did yesterday before she started wobbling and lost her balance. So far no other neuro deficits have been noted. Praise God!

    The websites you provided are helpful. I've read some of them, and they pretty much say the same thing. The outcome is certainly hopeful. Thanks for providing those links. I'll show them to my daughter.
  6. by   live4today
    just an update on my granddaughter since you both were so kind to respond. she may be discharged tomorrow if everything goes well tonight thru tomorrow morning. :hatparty: her iv steroids will cease tonight, and the oral steroids started tomorrow for five weeks. she's walking normal now, thus the doc wanted to stop the iv steroids after three days instead of the usual five days. we are pleased as punch with her healing process, but know the healing process continues for some time now.

    kids-r-fun...the links you provided were very helpful! thank you so much!
  7. by   Jolie
    So glad to hear that things are improving! It sounds like there may be reason to hope that she will recover without any long-term deficits. Please keep us posted.
  8. by   kids
    Thank you so much for the update Renee.
    I'm glad to hear she seems to be on the road to recovery.
  9. by   jnette
    Wow, Renee... just now taking a look at this thread for the first time, and wishing I had done so sooner to offer prayers and support. (((HUGS)))

    What a scary thing to be faced with ! So very gald to hear your precious granddaughter is recovering.. please do keep us updated.

    Going now to read the info on the links provided, to educate myself.. this is something I have no knowlege of as well.. getting ready to fix that now !
  10. by   mattsmom81
    God Bless your grandbaby and your whole family Renee....and you are all in my prayers for a full and uneventful recovery.