Quiver0f10 Posted June 10, 2009 Share Posted June 10, 2009 after the weird episode my 10 yo had last week. She ended up ordering an eeg, which they did today too. He has abnormal actvity, but didn't have any seizures during the 30 min eeg. She didn't see anything consistant with absence seizures. She said the constant abnormal activity could definitely be affecting his cognitive ability. The next step is to have his lamictal levels checked, which they did, and they also did a chromosone test. I am a bit nervous about that, but I am also glad it's being done. She raised his lamictal for now and depending on what the blood works shows she might change his meds. I realy don't want to change from the lamictal but I trust this Dr. She is looking over his MRI from March 08 and might redo that depending. After all this if there is no clear answer he will need a 24 hour eeg. So I don't feel like I learned anything new but I do fel like something is being done towards figuring out what exactly is going on. Quote Link to comment Share on other sites More sharing options...
Laurie4b Posted June 10, 2009 Share Posted June 10, 2009 Hang in there. I imagine it is tough waiting. Do you have a good support system where you are? Quote Link to comment Share on other sites More sharing options...
mommaduck Posted June 10, 2009 Share Posted June 10, 2009 Praying. Quote Link to comment Share on other sites More sharing options...
Wyndie Posted June 11, 2009 Share Posted June 11, 2009 :grouphug: Quote Link to comment Share on other sites More sharing options...
Ottakee Posted June 11, 2009 Share Posted June 11, 2009 Glad you are getting some answers. I know this is slow but the blood work for Lamictal is important, maybe redoing the MRI (we have to do ours yearly for 12dd), etc. Did she order any blood work for mitochondrial disorders? That might have been in with the chromosome work. My girls both have 2 different mutations and my 13dd has a 3rd one. We know the cause of the issues at least now. Just to give you hope, my 13dd has been doing SO much better the past few months to year. I noticed a big change when we went out to a horse show. She is also now reading chapter books, etc. Granted she is still doing early 2nd grade school work, but she is doing better in other areas so we will just keep plugging along. Quote Link to comment Share on other sites More sharing options...
Quiver0f10 Posted June 11, 2009 Author Share Posted June 11, 2009 Glad you are getting some answers. I know this is slow but the blood work for Lamictal is important, maybe redoing the MRI (we have to do ours yearly for 12dd), etc. Did she order any blood work for mitochondrial disorders? That might have been in with the chromosome work. My girls both have 2 different mutations and my 13dd has a 3rd one. We know the cause of the issues at least now. Just to give you hope, my 13dd has been doing SO much better the past few months to year. I noticed a big change when we went out to a horse show. She is also now reading chapter books, etc. Granted she is still doing early 2nd grade school work, but she is doing better in other areas so we will just keep plugging along. She really didn't get into explaining the chromosone testing and there was so much going on I didn't ask specifically what they are looking for. He also has Hirschsprung's Disease , which we found out when he was only 4 days old. There are some disorders with seizures and hirschsprungs and they sound really scary to me right now. So I am staying away from Google and am going to just wait until I hear from her. I would really like the MRI redone. The first one was done here and if they redo it it would be at children's by a pediatric specialist, which the neuro said would be much better. He has taken his lamictal in the morning yesterday, will that affect his blood test? You post does give me hope! Fantastic for your Dd! Quote Link to comment Share on other sites More sharing options...
Quiver0f10 Posted June 11, 2009 Author Share Posted June 11, 2009 Hang in there. I imagine it is tough waiting. Do you have a good support system where you are? I do. My church has been very supportive and encouraging. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted June 11, 2009 Share Posted June 11, 2009 Did they ask you the time of his last dose of Lamictal for the blood test? Generally you have to do the test 12 hours after the last dose and before the next one. Quote Link to comment Share on other sites More sharing options...
Quiver0f10 Posted June 12, 2009 Author Share Posted June 12, 2009 Did they ask you the time of his last dose of Lamictal for the blood test? Generally you have to do the test 12 hours after the last dose and before the next one. I thought so. No, they didn't ask. He had taken it @ 7 AM and they did the blood work at noon. I am going to have to talk to her about it. I wish I had thought of this then! Next time I am bringing a notebook. :banghead: Quote Link to comment Share on other sites More sharing options...
asta Posted June 12, 2009 Share Posted June 12, 2009 Did they ask you the time of his last dose of Lamictal for the blood test? Generally you have to do the test 12 hours after the last dose and before the next one. Hey, this is good to know! I had my LTG dose at 6:30, and had a seizure at around 1:00 pm (while getting a root canal, no less...). They took my level at 3:30. and I was only a 2 on a 1-4 scale. Granted, I'm still titrating up, but that tells me I'm probably higher than I thought (but not high enough). a Quote Link to comment Share on other sites More sharing options...
Ottakee Posted June 12, 2009 Share Posted June 12, 2009 Well, the Lamictal is supposed to become quite steady in the blood over time but you never know for sure. Our lab just changed the range from 1-4 to 3 or 4-12. The neurologist said they found the new therapeutic levels to be higher than thought before. I would talk to your doctor. Hey, this is good to know! I had my LTG dose at 6:30, and had a seizure at around 1:00 pm (while getting a root canal, no less...). They took my level at 3:30. and I was only a 2 on a 1-4 scale. Granted, I'm still titrating up, but that tells me I'm probably higher than I thought (but not high enough). a Quote Link to comment Share on other sites More sharing options...
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