Hi, I'm still trying to find the right seizure medication for my son. He has ADEM. He was on Keppra about a month ago and was weaned off it. Now he's on Trileptal and we were really hoping this would medication would work. Actually he didn't have any seizures for a whole wk. but now he's been having mini seizures again. Neurologists want to switch him to Depakote which we are against b/c of the rare side effect of loss of hearing. My son has loss of sight and we don't want him to lose his hearing and sight.
One Neurologist recommended Topomax. Has anyone else tried that?
Please help! We really want to make the right decision in helping our son and any advice you could provide would be helpful.
My son with recurrent ADEM took both Keppra and Depakote for over three years with no side effects, and they controlled his seizures. Every situation is different, but these medications worked for my son. Topomax was tried for him and did not work.
I don’t have seizures (that I know of…my legs, and only my legs shake sometimes), but I’m on Gabapentin which I have read is also a anti seizure medication. Although I by no means feel ‘normal’, I think the GABA helps a lot and have read comments from others who give that med a good review.
My son also took gabapentin (Neurontin) at a later stage in his illness, at age 13, once his main symptoms were headaches and optic neuritis, and he was no longer taking any other seizure medication. His history was that he suffered an attack of ADEM at age 6 years, and recovered fully. One year later, it--or something like it--recurred, with different symptoms, mainly seizures, headaches, and fever. While the first attack was unequivocally ADEM, it evolved by the time he was 9 years old into intermittent headaches and optic neuritis. His neurologist termed it "demyelinating disease of the white matter of the brain, primarily optic neuritis."
Quite a difficult and complex situation…what works on one does not necessarily work on the other and vice versa. I was on Keppra for a year and slowly coming off it by reducing the dosage. It worked on me… Judging from my experience, doctors have an arsenal consisting of drugs and therapies and use it selectively. If something fails they use an alternative within the same range… As you saw from my case, what worked perfectly well on me (Keppra) did not do so on your son. Same could apply with other drugs like the one you are asking about. Make a decision and hope for the best. If not opt for another doc.
Hi JD's mom, what did the doctors do for the optic neuritis? I think the doctors are going to start with steroids, but not sure if it will be daily or bi-weekly. thx
JD'sMom said:
My son also took gabapentin (Neurontin) at a later stage in his illness, at age 13, once his main symptoms were headaches and optic neuritis, and he was no longer taking any other seizure medication. His history was that he suffered an attack of ADEM at age 6 years, and recovered fully. One year later, it--or something like it--recurred, with different symptoms, mainly seizures, headaches, and fever. While the first attack was unequivocally ADEM, it evolved by the time he was 9 years old into intermittent headaches and optic neuritis. His neurologist termed it "demyelinating disease of the white matter of the brain, primarily optic neuritis."
Do most people with seizures take 2 medications? I worry about my son b/c when he titrated on the second seizure med, he was so tired and outta sorts. I felt sad for him. When do they become adjusted to the med or both meds?
My son still can't see and it's been 5 long months. Doctors say it's all due to the lesions. Any others out there heard of a similar situation like this. Any advice?
We are almost 6 months post ADEM diagnosis and my son has made great improvements! He has still a long ways to go, but is doing wonderful!
He still can't see, walk b/c of the sight, cranial nerves are affected b/c of lesions, talk. He is currently getting chemo and steroids and seizure medication.
The first seizure was a grand mal, the culmination of several days of increasingly bad headaches and then fever. He went on Dilantin after that, and never had a grand mal seizure again, but he had partial and absence seizures--the latter were brief moments of staring into space so we did not even know he was having them until an EEG picked one up. Partial seizures ranged from mini-versions of a grand mal to being able to walk around but not communicate. He had at least one partial seizure that was nonconvulsive status ellipticus--went on for over 30 minutes until we got him to the Children's Hospital emergency room for treatment. He was able to walk but not talk. He stared ahead and periodically his lips would twitch and eyes blink. He later said he was conscious but couldn't communicate. After the partial and absence seizures his medications were switched from Dilantin to Keppra and Depakote, for partial and absence seizures, respectively, which worked.
JP said:
What does ADEM seizures look like? I know everyone is different, but if u could describe your's or your child's would be helpful. Thx!
Optic neuritis was treated primarily with high-dose solumedrol infusions for the worst attacks, followed by prednisone and also IVIG infusions monthly and then every 6 weeks for a total of three years. The goal was to reduce reliance on steroids. Methotrexate was added, and several years later, mycophenolate (Cellcept), while tapering off prednisone entirely. For the past 3 years all symptoms quiet while on methotrexate and mycophenolate. Now gradually tapering off all meds. He is 16-1/2.
JP said:
Hi JD's mom, what did the doctors do for the optic neuritis? I think the doctors are going to start with steroids, but not sure if it will be daily or bi-weekly. thx
JD'sMom said:
My son also took gabapentin (Neurontin) at a later stage in his illness, at age 13, once his main symptoms were headaches and optic neuritis, and he was no longer taking any other seizure medication. His history was that he suffered an attack of ADEM at age 6 years, and recovered fully. One year later, it--or something like it--recurred, with different symptoms, mainly seizures, headaches, and fever. While the first attack was unequivocally ADEM, it evolved by the time he was 9 years old into intermittent headaches and optic neuritis. His neurologist termed it "demyelinating disease of the white matter of the brain, primarily optic neuritis."
Hi JD's mom, out of medications for the optic neuritis, which one do u think was most beneficial? I think this is valuable info I can bring up to my son's doctors b/c it's been 6 months post ADEM and he still has loss of sight. he may be able to see shadows, but it's sporadic.
Any info u could provide regarding this issue is appreciated! U can inbox me if you would like.
I think IVIG (intravenous immunoglobulin) was key for my son. However, that alone wouldn't have been enough; he needed low-dose prednisone all along to prevent breakthrough ON symptoms. IVIG treatments were discontinued after 3 years because my son developed an intolerance for the infusions. Methotrexate and later Cellcept were both important for keeping immune system quiet and allowing him to very, very gradually taper off prednisone. (Imuran was tried but wasn't compatible with my son's metabolism, so methotrexate was used instead.) Of course, it is impossible to know if he would not have "grown out" of symptoms anyway, as he got older, but I believe that the combination of prednisone, IVIG, methotrexate and Cellcept was effective for him. Hope this helps.
Hi JD's Mom, thanks so much for the info! I appreciate ur time in explaining everything. It really means a lot. I was able to discuss some of ur info with my son's doctor to hopefully get him on the right path to gain his sight back.
Did ur son have problems with his sight when he was first diagnosed with ADEM at age 6? Did his sight fully come back? We are trying to determine what is the best med to help my son gain his sight back since it's 6 months post ADEM.
Wow, ur one brave woman to deal with ADEM at age 6 and then something similar at age 7. I hope ur son is doing well now! And I hope health in the future for him too!
Thanks for being such a great resource for this site!
Hi JD's mom, what meds did they use for ur son at age 6? They used IVIG in the beginning for my son but it didn't work.
Do u feel steroids helped with the optic neuritis? Did they have any other causes that could have caused the ADEM similarities to reappear a yr. later post ADEM?
Ur son must be one of the few kiddos who had ADEM similarities back a yr later b/c all the research I've read, I didn't read anything like this. All the info I've read for my son's case is very rare too. Prednisone, IVIG and plasma exchange didn't work for my son.
Hi JD's Mom, was it the neurologist, ophthalmologist, or another doctor who decided to use the IVIG, prednisone and other meds? My son goes to the ophthalmologist tmrw and I'm interested to see what kind of input they will have to add to his sight issue. We spoke with his oncologist the other day and we think we're on the right path.
My son's pediatric neurologist (Children's Hospital, Omaha NE) was the first to prescribe treatment with high-dose steroids -- it was absolutely necessary for his first attack of ADEM, which was quite severe. The optic neuritis occurred 2-1/2 years later, and the neuro-ophthamologist who diagnosed bilateral optic neuritis treated it with prednisone (alternate day therapy). Because the ON symptoms continued, both his neurologist and the neuro-ophthamologist, who were working very closely together in my son's case, initiated the IVIG therapy one year later.