Hello,
I am new on this forum - thank goodness I found it last night while surfing the net for answers!
I had epilepsy as a child, but have been seizure-free since 1994 (except for an incident in Nov 2007). I still experience Auras (I think that's what it's called), and headaches are part of life, but I am not on any medication.
In Aug last year I had my first child - a little boy who has Down syndrome. I have found a wealth of information and support on Down syndrome forums, but we seem to have entered a new phase.
My son is now 8 months old and last week started displaying seizure-like activity. I call it 'seizure' like because I can't imagine what else it could be. I notice these episodes mostly when he's lying on his back. His arms will shoot forward (like he's reaching for something) and then they will flail around abit. Also his eyes get a glazed look. This lasts for anywhere between half a second to 5 seconds and he usually ends off by going on his side. These occur in clusters and I have counted at least 30 in an hour.
Our Paed is not convinced that these movements aren't normal - but she also has not seen them properly. An EEG was done (while he was in induced sleep) and it came back normal. And yet, these seizures continue.
I have done a lot of research over the past few days and would really appreciate any advice anyone has for me?
1. My son has Hypothyrodism (we found out last week that his TSH levels have jumped from 1 - 8 in two months, and so he was not getting nearly enough medication to control this. We have now doubled his daily dose). I have read that thyroid disfunction can contribute to seizure activity?
2. Due to the hypothyroidism I am assuming (I need to still get blood results) that his levels of Calcium Phosphate are low. I have heard that calcium levels also contribute to seizures?
3. I have also read that a normal EEG does not rule out seizure activity?
4. Infantile seizures also lead to a regression in functioning - does anyone know if this is an immediate or slow process? My son is still interacting, smiling and eating well.
I have started taping these episodes and will be taking the tapes to my son's therapists (PT and OT) tomorrow for their opinions.
But this forum seems to be a place filled with real people who have had real experiences and a wealth of knowledge. Please can someone help me understand what could be going on?
Sorry for the essay!!
Thank you in advance for any help!
I am new on this forum - thank goodness I found it last night while surfing the net for answers!
I had epilepsy as a child, but have been seizure-free since 1994 (except for an incident in Nov 2007). I still experience Auras (I think that's what it's called), and headaches are part of life, but I am not on any medication.
In Aug last year I had my first child - a little boy who has Down syndrome. I have found a wealth of information and support on Down syndrome forums, but we seem to have entered a new phase.
My son is now 8 months old and last week started displaying seizure-like activity. I call it 'seizure' like because I can't imagine what else it could be. I notice these episodes mostly when he's lying on his back. His arms will shoot forward (like he's reaching for something) and then they will flail around abit. Also his eyes get a glazed look. This lasts for anywhere between half a second to 5 seconds and he usually ends off by going on his side. These occur in clusters and I have counted at least 30 in an hour.
Our Paed is not convinced that these movements aren't normal - but she also has not seen them properly. An EEG was done (while he was in induced sleep) and it came back normal. And yet, these seizures continue.
I have done a lot of research over the past few days and would really appreciate any advice anyone has for me?
1. My son has Hypothyrodism (we found out last week that his TSH levels have jumped from 1 - 8 in two months, and so he was not getting nearly enough medication to control this. We have now doubled his daily dose). I have read that thyroid disfunction can contribute to seizure activity?
2. Due to the hypothyroidism I am assuming (I need to still get blood results) that his levels of Calcium Phosphate are low. I have heard that calcium levels also contribute to seizures?
3. I have also read that a normal EEG does not rule out seizure activity?
4. Infantile seizures also lead to a regression in functioning - does anyone know if this is an immediate or slow process? My son is still interacting, smiling and eating well.
I have started taping these episodes and will be taking the tapes to my son's therapists (PT and OT) tomorrow for their opinions.
But this forum seems to be a place filled with real people who have had real experiences and a wealth of knowledge. Please can someone help me understand what could be going on?
Sorry for the essay!!
Thank you in advance for any help!
Hopefully, we can be of some help. Make sure that you videotape your son while he's having these bouts, and go see a pediatric neuro if you can. If you can't because of insurance issues. then make absolutely certain that you give a copy to his ped.
