My 3 yr. old son was diagnosed with ADEM on Aug. 13, 2014. It's been quite the journey since then. But he's improving and we're thrilled!
On. Nov. 22, 2014, he started having mild seizures, ranging from 30 seconds-2 min. The doctors are puzzled b/c usually kids w/ ADEM develop seizures early on with their diagnosis. Not 3-4 months after.
They are partial seizures. His head and eyes go to the left. They're considered figure 4 seizures. Also his leg gets stiff too.
The concern is now that he started walking, he is now collapsing straight to the floor. We are worried he will hurt himself so we stay near him at all times. He also wears a helmet to be preventive.
He was on Keppra, but that didn't stop the seizures. Then they started him on Trileptal, but he has bad indigestion-gas, burping, glassy eyes and a true look of discomfort. A doctor wanted to start him on Depakote today, but we're very concerned b/c it seems like it has lots of side effects. The scary thing is that my son usually gets the side effects. Two side effects are sight and hearing. And at this time, he cannot see. Actually on his last MRI, (11/22/14), they was a firing lesion on his optic nerve. Therefore, we don't want his hearing to be affected or even take the chance b/c he can't see.
Any advice on what medication worked for your child? Any advice on anything else concerning ADEM would be greatly appreciated!
Hello Jenny, Sorry to hear about your son. It is still hard for me to even visit this website since my son(9 years old) diagnosis june of this year. We are still shaking from the experience although we were very lucky and he never had any seizures or anything. he was in the ICU for 6 days and was a total of 8 days hospitalized. He walked on the 7th day and speech was a little slurred but it all got back to normal "or so we think" in a couple of weeks. He had IVIG X 2 and antibiotics since the drs did not know if he was still having an infection. When my son was in the hospital the drs mentioned that if he didn't get better there were other treatments like plasma exchange and steroids. I will have you and your son in our prayers. I know how hard this is for you and your family but have faith. I have heard ADEM horror stories with very happy endings.
Lien, I really appreciate your coming back to help Jenny out. It means a lot. I am very glad your son is doing well. Happy holidays to you and your family!
My 3.5 yr. old son received steroids, IVIG and plasma exchange for ADEM. None of these procedures were successful. Currently, he's received 6 treatments of chemo and one 3-day round of steroids. He's affected from ADEM in the following ways: can't walk, talk or see. He also started having seizures 3 months after the diagnosis of Aug. 13, 2014. He was on Keppra, but that didn't work. He's currently on Trileptal, which seems to be helping but he had indigestion from in the 1st two wks. A Neurologist wanted to start him on Depakote, but honestly I'm scared to start him on that b/c of the side effects. Whatever is a rare side effect, my son seems to get it and hearing is one side effect. We don't want him to lose his hearing along with his eyesight.
Do you have any information that you can provide that can be of guidance in his case?
I don't have any experience with seizures but I think there are some other threads on here about seizures. Is your son at a children's hospital? In my experience being at a children's hospital has made a big difference.
Given the late onset of seizures are the doctors concerned this may be something other than ADEM? I can totally relate to the concern about throwing more medicine at a little guy. I know this is a scary time but hopefully your son will get the right mix of treatment and be on the mend soon. Like Lien my son had a bad case of ADEM but has recovered well, and I hope your son does too.
Lien - Thanks for coming back to help other families. Experiences and perspectives like yours can really help new families who are just coming to grips with ADEM. I'm so glad to hear your son is doing better. Ken
Lien said:
Hello Jenny, Sorry to hear about your son. It is still hard for me to even visit this website since my son(9 years old) diagnosis june of this year. We are still shaking from the experience although we were very lucky and he never had any seizures or anything. he was in the ICU for 6 days and was a total of 8 days hospitalized. He walked on the 7th day and speech was a little slurred but it all got back to normal "or so we think" in a couple of weeks. He had IVIG X 2 and antibiotics since the drs did not know if he was still having an infection. When my son was in the hospital the drs mentioned that if he didn't get better there were other treatments like plasma exchange and steroids. I will have you and your son in our prayers. I know how hard this is for you and your family but have faith. I have heard ADEM horror stories with very happy endings.