I am trying to decide whether to listen to the neurologist and put my three-year-old daughter on Depakote, try the Ketogenic diet, or see another doctor – or do all three.
Sorry for wordiness (I cannot remember the exact ages or events since I was told, repeatedly, there is nothing to worry about; and I wanted to believe that.)…
I noticed my daughter having tremors in her hands when she was a baby. I mentioned them several times to the ped who said it was nothing to worry about since it is rarely a problem if they are on both sides of the body and she is doing fine otherwise.
Between eighteen months and 2.5 years my daughter had ‘episodes’ that seemed to have no cause. She rolled around, thrashed, banged into things with no concern. She was ‘checked out’. Afterwards she would lie limp in my arms and whimper. They could happen day or night and with no regularity. I thought they were seizures and spoke with the ped several times. He said they lasted too long to be seizures and were probably night terrors – no answer about the daytime episodes. In May I took her to a behavioral psychologist since she had so many behaviors indicating aspergers syndrome. The BP said these episodes can be common in people w/AS and since they’ve stopped she probably found another way to cope with the unseen triggers.
My daughter stares and spaces out for short periods. Once again I was told it was nothing. The stares and tremors are subtle – my husband and the ped never saw anything. I felt like I was crazy.
She spoke at a year but stopped all language from 12-18 months. She started ST and DT (her fine motor skills were great but she has tons of sensory issues – hypo) Her DT noticed the tremors were also in her legs.
Last month I demanded an EEG. (I know I waited too long.) The results showed significant & obvious abnormalities on the left side - seizures (epilepsy). I contacted my son’s neurologist at University of Chicago who said he couldn’t see my daughter until 2008. On Friday before July 4th I faxed the EEG results to him anyway and to Mayo Clinic – The Neurologist from UOC called and told us to be there July 5th. That day he wanted to start her on drugs. I explained my concern about the drugs and asked that we do more tests to have a better understanding of the seizures. He suggested an extended EEG and an MRI. We had the 24 hour EEG this week and as expected she was having many generalized seizures day and night. The MRI is scheduled for next week. I was given a script for Depakote and told to start her on it last night – I haven’t yet. Our appointment at Mayo is scheduled for Sept. 25th. I called this morning to try to have it bumped up.
I was given the following reasons for the need for Depakote:
When in school she will miss direction, etc. because of the seizures – I was fine w/this. I’ll home school and repeat myself all day if needed.
Her sleep will be disturbed and inadequate and cause learning and behavioral problems– Also does not seem like a good enough reason to risk the side effects of the drugs.
Her seizures will increase in frequency and severity. Possibly causing long term damage (there may be some already since she's probably been seizing her entire life) And even if they do not worsen, long-term frequent seizures as she is having can still cause brain damage. THIS is the reason I am considering the Depakote.
I know Depakote has been used for over twenty-five years but I am concerned, not only with the possibility of liver or pancreas failure but also changes in her personality. I realize the tests were not done on toddlers but it has been used frequently ‘off-label’ for kids over nine. I’m guessing all Neurologists will have a drug of choice. Has anyone used Depakote on a toddler?
I’ve mentioned the Ketogenic diet to two doctors who were strongly against it. First because it is difficult – and I said I didn’t care. But also because, according to them, it is ineffective in many cases and dangerous in it’s own right. Has anyone used the diet w/o trying drugs first?
I’d appreciate any information. Any experience with drugs, the diet or even suggestions for neurologists. Thank you!
Sorry for wordiness (I cannot remember the exact ages or events since I was told, repeatedly, there is nothing to worry about; and I wanted to believe that.)…
I noticed my daughter having tremors in her hands when she was a baby. I mentioned them several times to the ped who said it was nothing to worry about since it is rarely a problem if they are on both sides of the body and she is doing fine otherwise.
Between eighteen months and 2.5 years my daughter had ‘episodes’ that seemed to have no cause. She rolled around, thrashed, banged into things with no concern. She was ‘checked out’. Afterwards she would lie limp in my arms and whimper. They could happen day or night and with no regularity. I thought they were seizures and spoke with the ped several times. He said they lasted too long to be seizures and were probably night terrors – no answer about the daytime episodes. In May I took her to a behavioral psychologist since she had so many behaviors indicating aspergers syndrome. The BP said these episodes can be common in people w/AS and since they’ve stopped she probably found another way to cope with the unseen triggers.
My daughter stares and spaces out for short periods. Once again I was told it was nothing. The stares and tremors are subtle – my husband and the ped never saw anything. I felt like I was crazy.
She spoke at a year but stopped all language from 12-18 months. She started ST and DT (her fine motor skills were great but she has tons of sensory issues – hypo) Her DT noticed the tremors were also in her legs.
Last month I demanded an EEG. (I know I waited too long.) The results showed significant & obvious abnormalities on the left side - seizures (epilepsy). I contacted my son’s neurologist at University of Chicago who said he couldn’t see my daughter until 2008. On Friday before July 4th I faxed the EEG results to him anyway and to Mayo Clinic – The Neurologist from UOC called and told us to be there July 5th. That day he wanted to start her on drugs. I explained my concern about the drugs and asked that we do more tests to have a better understanding of the seizures. He suggested an extended EEG and an MRI. We had the 24 hour EEG this week and as expected she was having many generalized seizures day and night. The MRI is scheduled for next week. I was given a script for Depakote and told to start her on it last night – I haven’t yet. Our appointment at Mayo is scheduled for Sept. 25th. I called this morning to try to have it bumped up.
I was given the following reasons for the need for Depakote:
When in school she will miss direction, etc. because of the seizures – I was fine w/this. I’ll home school and repeat myself all day if needed.
Her sleep will be disturbed and inadequate and cause learning and behavioral problems– Also does not seem like a good enough reason to risk the side effects of the drugs.
Her seizures will increase in frequency and severity. Possibly causing long term damage (there may be some already since she's probably been seizing her entire life) And even if they do not worsen, long-term frequent seizures as she is having can still cause brain damage. THIS is the reason I am considering the Depakote.
I know Depakote has been used for over twenty-five years but I am concerned, not only with the possibility of liver or pancreas failure but also changes in her personality. I realize the tests were not done on toddlers but it has been used frequently ‘off-label’ for kids over nine. I’m guessing all Neurologists will have a drug of choice. Has anyone used Depakote on a toddler?
I’ve mentioned the Ketogenic diet to two doctors who were strongly against it. First because it is difficult – and I said I didn’t care. But also because, according to them, it is ineffective in many cases and dangerous in it’s own right. Has anyone used the diet w/o trying drugs first?
I’d appreciate any information. Any experience with drugs, the diet or even suggestions for neurologists. Thank you!
, so don't let our experience scare you). For us, the side effects are a much smaller concern than the seizures. Still, we went up on these medications slowly (titration schedules were very slow and gradual in their increase) and we did a lot of bloodwork at the beginning to make sure everything was going well. Three years in, we don't worry at all about the side effects. These are the drugs that are working for our boys, seemingly without side effects, and we're just *so* thankful to have found something that works.
