OK, so I've had this in the back of my head for a few weeks but have avoided thinking about it as much as possible.
Basic story of DS1: He has had epilepsy. Dxd at age 2 when he had a presumed drop (or absence) and fell and hit his head, precipitating a concussion complete with vomiting, tonic-clonic, etc.--then he had a spontaneous TC a few weeks later, then started having drops, myoclonics, etc.--which is when we decided the previous episodes (since 6-12 months of age) had been myoclonics or partials probably. Despite having 4+ seizure types, his EEG was background normal and they caught 2 generalized myoclonics on it. A few meds, many with unacceptable side effects, all with only partial control of seizures, back to the original med while consulting about ketogenic diet, and seizures slowly came under control. About a year later, seizure free, 2 months ago, we weaned him from that med (depakote) due to good control and unacceptable side effects. Still seizure-free (fingers crossed!), behavior improving, etc. Even in retrospect, he had no infantile spasms. He's now 4.5 YO
Also, of my 4 kids, DS1 and DS3 are very similar physically--and although I minutely analyzed every aspect of DS1 because I was about half-convinced he had mosaic Down syndrome for the first few months of his life, he is and always has been, even when he was having multiple myoclonic and drop seizures daily, developmentally on track and was never genetically tested.
DD has never had seizures or dev. delay.
DS2 had some dev delay and is officially on track now although he still has virtually no hair (never had a haircut and it's maybe 2 inches long) and he has speech issues--but the speech therapist has evaluated him twice and says he's fine, and he's smart enough to say to his older brother when he teases him about his talking "I can't talk right because I'm little, leave me alone." And he generally just seems a little "off/odd" to us still--he's 3.5 YO. No seizures ever.
FF to DS3 who is 9WO. Developmentally on track I guess (that early who can say?). Although he does seem to me to clench his fists more than I think he should--like when he reaches for things and waves his arms he almost always does so with fists although he can unclench his hands...?
BUT he's been having these occasional episodes which I thought looked suspiciously seizure-like. No one has really seen them but me. DD (10YO) has seen one and DH I think has but misidentified it as DS being upset. No pattern to them, no regularity. Sometimes a couple of times a day, sometimes not for a few days, one day when I *think* he was hot (overdressed in a warm car? though in what he usually wears and he does fine--so was he actually sweaty because of the episodes and not vice versa?) he had about 6 or 10 in his carseat (he was rear-facing and I was driving so I couldn't see them well but in the mirror until I got to where I could pull over--and each time I'd strap him back in they'd happen again after a little while. The only other possible provoking factor is they all have happened either strapped in his carseat or being held around his stomach/chest--I tried to convince myself they might be reflux for a little while but I know they're not.
And BTW, our video camera is broken and $ is really tight right now--we have an older digital camera, a kids digital camera, and my phone that all take poor quality videos so if a cluster happens again I will definitely try to get them on something--but since they're usually not in clusters that's hard to do.
What they look like is...well mostly like infantile spasm videos on youtube. Arms stretch out to sides (sort of like a startle but different). Face gets red. He's doesn't breathe for those few seconds. His eyes are open and seem to look at me (I know, he's a baby, but I swear his expression is like 'WTF is happening, I don't like it, make it stop!'). They only last a few seconds (like 2-3 I think, maybe 4-5 once or twice), and then he relaxes his arms and takes a big breath and pokes his lower lip out and cries (like a baby).
So...talk to me about these. Those who have seen IS, do they sound like IS? Anyone have multiple DCs with epilepsy and no other issues? Anybody have any other thoughts?
We're going to the pediatrician for checkup today and supposed to be first shots (we normally delayed vax) but I'll probably decline them until we get to the neurologist (at least we have a good one) (don't y'all think that's best in the circumstances, to wait on vax?) and I'll talk to her about them and get a referral to our neuro I guess but...?
TIA!
-lava
Basic story of DS1: He has had epilepsy. Dxd at age 2 when he had a presumed drop (or absence) and fell and hit his head, precipitating a concussion complete with vomiting, tonic-clonic, etc.--then he had a spontaneous TC a few weeks later, then started having drops, myoclonics, etc.--which is when we decided the previous episodes (since 6-12 months of age) had been myoclonics or partials probably. Despite having 4+ seizure types, his EEG was background normal and they caught 2 generalized myoclonics on it. A few meds, many with unacceptable side effects, all with only partial control of seizures, back to the original med while consulting about ketogenic diet, and seizures slowly came under control. About a year later, seizure free, 2 months ago, we weaned him from that med (depakote) due to good control and unacceptable side effects. Still seizure-free (fingers crossed!), behavior improving, etc. Even in retrospect, he had no infantile spasms. He's now 4.5 YO
Also, of my 4 kids, DS1 and DS3 are very similar physically--and although I minutely analyzed every aspect of DS1 because I was about half-convinced he had mosaic Down syndrome for the first few months of his life, he is and always has been, even when he was having multiple myoclonic and drop seizures daily, developmentally on track and was never genetically tested.
DD has never had seizures or dev. delay.
DS2 had some dev delay and is officially on track now although he still has virtually no hair (never had a haircut and it's maybe 2 inches long) and he has speech issues--but the speech therapist has evaluated him twice and says he's fine, and he's smart enough to say to his older brother when he teases him about his talking "I can't talk right because I'm little, leave me alone." And he generally just seems a little "off/odd" to us still--he's 3.5 YO. No seizures ever.
FF to DS3 who is 9WO. Developmentally on track I guess (that early who can say?). Although he does seem to me to clench his fists more than I think he should--like when he reaches for things and waves his arms he almost always does so with fists although he can unclench his hands...?
BUT he's been having these occasional episodes which I thought looked suspiciously seizure-like. No one has really seen them but me. DD (10YO) has seen one and DH I think has but misidentified it as DS being upset. No pattern to them, no regularity. Sometimes a couple of times a day, sometimes not for a few days, one day when I *think* he was hot (overdressed in a warm car? though in what he usually wears and he does fine--so was he actually sweaty because of the episodes and not vice versa?) he had about 6 or 10 in his carseat (he was rear-facing and I was driving so I couldn't see them well but in the mirror until I got to where I could pull over--and each time I'd strap him back in they'd happen again after a little while. The only other possible provoking factor is they all have happened either strapped in his carseat or being held around his stomach/chest--I tried to convince myself they might be reflux for a little while but I know they're not.
And BTW, our video camera is broken and $ is really tight right now--we have an older digital camera, a kids digital camera, and my phone that all take poor quality videos so if a cluster happens again I will definitely try to get them on something--but since they're usually not in clusters that's hard to do.
What they look like is...well mostly like infantile spasm videos on youtube. Arms stretch out to sides (sort of like a startle but different). Face gets red. He's doesn't breathe for those few seconds. His eyes are open and seem to look at me (I know, he's a baby, but I swear his expression is like 'WTF is happening, I don't like it, make it stop!'). They only last a few seconds (like 2-3 I think, maybe 4-5 once or twice), and then he relaxes his arms and takes a big breath and pokes his lower lip out and cries (like a baby).
So...talk to me about these. Those who have seen IS, do they sound like IS? Anyone have multiple DCs with epilepsy and no other issues? Anybody have any other thoughts?
We're going to the pediatrician for checkup today and supposed to be first shots (we normally delayed vax) but I'll probably decline them until we get to the neurologist (at least we have a good one) (don't y'all think that's best in the circumstances, to wait on vax?) and I'll talk to her about them and get a referral to our neuro I guess but...?
TIA!
-lava
.
Follow Mothering