Porkchop's Mama
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Hi everyone.... I wanted to introduce myself and give you a background on my son's epilepsy.... I look forward to hearing from parents of children with epilepsy.
I am a 29 year old, married, mother of two. Both of my children have epilepsy, though my daugher is far more mild a case than my son seems to be at this point.
Jan 21 My son had his first seizure.... about 5-ish minutes. He had a fever. Given our family history (my husband had childhood epilepsy, my sister and daughter have epilepsy, which all appeared fabrile in the beginning) this put me on alert. but we hoped that since he wasn't feeling well, once he improved, things would get less hairy. we were sent home with no more than "he is fine, these things happen"
Since he still wasn't himself by the middle of the next week (jan 27) I called his paed and we went in. He had an ear infection and was put on antibiotics.
By saturday he was much improved and we even sent him to daycare on Monday jan 31.
Everyone gets back into routine, but the snowstorm Feb 2 forced my husband and I to stay home. Blake was more cuddly for sure, but not so much that I was worried about it at the time.
Thursday feb 3 Blake woke up with that terrible, croupy cough and a green (and terribly sticky, ew!) snotty nose and I wasn't taking any chances and brought him to the clinic I work in to be seen. the doc said that now BOTH ears and throat were inflamed and changed his antibiotic.
We kept him medicated to control fever and he went home with his nana as usual.
I text at lunch to find out how he was. It turns out my mother in law was calling me because the dog had found Blake unresponsive and "alerted" by barking like crazy. That seizure was 5 - 7 minutes. His hands turned black, so off he went in an ambulance to the er. his temp was nothing to even worry about. (99.1?)
A couple hours later, in the ER Blake starts acting funny (confused, not himself) which the staff didn't really believe but, whatever. Minutes after that (within 5) Blake collapses on me and seizes. His face turned black, and they rush him off to the resussitation (sp??) room where he almost immediately stabilizes.
So, he gets admitted, blood work, etc.
at 10 pm, he acts odd again (confused etc), and I mention it. Less than 2 minutes later he seized again. This time chatting jibberish through it. It lasts over 12 minutes. Paed on call says he can't rule out meningitis and has to do a lumbar puncture. (again, no fever)
everything comes back normal, they set up an eeg and mri as an outpatient and send him home Sunday feb 6.
Monday I call his pediatrician to discuss where we go from here because I am convinced these are not febrile seizures. nothing can be done until mri and eeg results
mri was tuesday Feb 15.
Feb 17 after work, I took the kids up to the hospital to see my sister in law who was admitted in ptl (29 weeks) since she is on hospital bedrest.
Blake had fabulous day. he was happy, funny and even a little adventurous. I REALLY thought we were getting through.
THEN I decide to bring the children home. As we walk out of the hospital, I notice (but am not alarmed by) Blake's eyes seem glossy but it was 1/2 hr past his bedtime. I buckle him and my daughter in the car. He watches the Aristocats movie in the van almost always. he loves the music. My daughter complained because she is tired of that movie and wanted something else. i took his movie out and changed it. (this is when I SHOULD have wondered if something was wrong because he did not fuss as he normally would but I passed it off as 'tired') I paid for parking and drove out. Stopped and put gas in the van (it took FOREVER since their pump was acting up). This entire time, I'm not worried about the kids, i can see them, they appear to be watching the movie (albeit unusually quietly). I get in the van and stop at the neighbouring Tim Hortons to grab my husband a coffee for when he wakes up for work. But even though I can SEE my bank balance on my iphone, for some reason my card doesn't work. So, embarrassed and tired, I pull away without the juice my daugher wanted and the TIMBIT treat they were going to get. This is the next time I think something is off because my daughter got teary-eyed about the incident but Blake just continued to watch the movie, silent. As I am driving I am apologizing to the kids... but Blake isn't responding. So I start yelling his name. He just sits there. I'm yelling "Blake! BLAKE! Look at Mommy buddy!" and clearly beginning to panic. My daughter says "Don't worry mommy, he's alive. His eyes are open" (bless her, she is so sweet and innocent). I pull over (cutting off a car) and open his door. he is grunting and definitely having a seizure (most probably since he had gotten in the car 10-15 minutes before!). We call 911 and the ambulance arrives (took them EIGHT minutes!) and takes himto the ER. I have my daughter, so I get back in the van and follow (just a couple miles) down the road back to the same damn hospital we had just left!
They put us in the 'quiet room' (which is when i know it's bad, as we have ALWAYS otherwise been with him) my husband, my mom and mother in law all arrive. My daughter is taken upstairs to visit her aunt again by my brother in law(Thank GOD she was there!)
For HOURS we know nothing. They don't update us. Then finally, someone comes out. His seizure was 3 hours (from the time he arrived at the ER) and they had trouble getting it to stop (even with a lot of medicine - dilantin, ativan, valium and finally phenobarbitol). They had had to intubate him and put him on a ventilator to stabilize him. They told us that they were not equipped to handle a case like this and he would need a children's hospital (either 15 minutes away in Detroit MI or 2 hours away in London, ON.) So, we end up waiting for a team from London to come down and get him transported. They get there at 2am. My husband and I leave to make it there without speeding, while they prepare to move Blake.
By the morning Blake no longer needed to be intubated and had a million more tests. When we saw the pediatric neurologist that afternoon, he said that given the frequency (and worsening severity with each episode) he felt we have no choice but to diagnose epilepsy and begin medication. He said "we cannot afford to take a 'wait and see approach' ". Blake was started on carbamazepine, which we are ramping up to the full, therapeutic dosage.
It has been an absolutely exhausting month. If you have read this much, thank you! And I look forward to hearing from you.
I am a 29 year old, married, mother of two. Both of my children have epilepsy, though my daugher is far more mild a case than my son seems to be at this point.
Jan 21 My son had his first seizure.... about 5-ish minutes. He had a fever. Given our family history (my husband had childhood epilepsy, my sister and daughter have epilepsy, which all appeared fabrile in the beginning) this put me on alert. but we hoped that since he wasn't feeling well, once he improved, things would get less hairy. we were sent home with no more than "he is fine, these things happen"
Since he still wasn't himself by the middle of the next week (jan 27) I called his paed and we went in. He had an ear infection and was put on antibiotics.
By saturday he was much improved and we even sent him to daycare on Monday jan 31.
Everyone gets back into routine, but the snowstorm Feb 2 forced my husband and I to stay home. Blake was more cuddly for sure, but not so much that I was worried about it at the time.
Thursday feb 3 Blake woke up with that terrible, croupy cough and a green (and terribly sticky, ew!) snotty nose and I wasn't taking any chances and brought him to the clinic I work in to be seen. the doc said that now BOTH ears and throat were inflamed and changed his antibiotic.
We kept him medicated to control fever and he went home with his nana as usual.
I text at lunch to find out how he was. It turns out my mother in law was calling me because the dog had found Blake unresponsive and "alerted" by barking like crazy. That seizure was 5 - 7 minutes. His hands turned black, so off he went in an ambulance to the er. his temp was nothing to even worry about. (99.1?)
A couple hours later, in the ER Blake starts acting funny (confused, not himself) which the staff didn't really believe but, whatever. Minutes after that (within 5) Blake collapses on me and seizes. His face turned black, and they rush him off to the resussitation (sp??) room where he almost immediately stabilizes.
So, he gets admitted, blood work, etc.
at 10 pm, he acts odd again (confused etc), and I mention it. Less than 2 minutes later he seized again. This time chatting jibberish through it. It lasts over 12 minutes. Paed on call says he can't rule out meningitis and has to do a lumbar puncture. (again, no fever)
everything comes back normal, they set up an eeg and mri as an outpatient and send him home Sunday feb 6.
Monday I call his pediatrician to discuss where we go from here because I am convinced these are not febrile seizures. nothing can be done until mri and eeg results
mri was tuesday Feb 15.
Feb 17 after work, I took the kids up to the hospital to see my sister in law who was admitted in ptl (29 weeks) since she is on hospital bedrest.
Blake had fabulous day. he was happy, funny and even a little adventurous. I REALLY thought we were getting through.
THEN I decide to bring the children home. As we walk out of the hospital, I notice (but am not alarmed by) Blake's eyes seem glossy but it was 1/2 hr past his bedtime. I buckle him and my daughter in the car. He watches the Aristocats movie in the van almost always. he loves the music. My daughter complained because she is tired of that movie and wanted something else. i took his movie out and changed it. (this is when I SHOULD have wondered if something was wrong because he did not fuss as he normally would but I passed it off as 'tired') I paid for parking and drove out. Stopped and put gas in the van (it took FOREVER since their pump was acting up). This entire time, I'm not worried about the kids, i can see them, they appear to be watching the movie (albeit unusually quietly). I get in the van and stop at the neighbouring Tim Hortons to grab my husband a coffee for when he wakes up for work. But even though I can SEE my bank balance on my iphone, for some reason my card doesn't work. So, embarrassed and tired, I pull away without the juice my daugher wanted and the TIMBIT treat they were going to get. This is the next time I think something is off because my daughter got teary-eyed about the incident but Blake just continued to watch the movie, silent. As I am driving I am apologizing to the kids... but Blake isn't responding. So I start yelling his name. He just sits there. I'm yelling "Blake! BLAKE! Look at Mommy buddy!" and clearly beginning to panic. My daughter says "Don't worry mommy, he's alive. His eyes are open" (bless her, she is so sweet and innocent). I pull over (cutting off a car) and open his door. he is grunting and definitely having a seizure (most probably since he had gotten in the car 10-15 minutes before!). We call 911 and the ambulance arrives (took them EIGHT minutes!) and takes himto the ER. I have my daughter, so I get back in the van and follow (just a couple miles) down the road back to the same damn hospital we had just left!
They put us in the 'quiet room' (which is when i know it's bad, as we have ALWAYS otherwise been with him) my husband, my mom and mother in law all arrive. My daughter is taken upstairs to visit her aunt again by my brother in law(Thank GOD she was there!)
For HOURS we know nothing. They don't update us. Then finally, someone comes out. His seizure was 3 hours (from the time he arrived at the ER) and they had trouble getting it to stop (even with a lot of medicine - dilantin, ativan, valium and finally phenobarbitol). They had had to intubate him and put him on a ventilator to stabilize him. They told us that they were not equipped to handle a case like this and he would need a children's hospital (either 15 minutes away in Detroit MI or 2 hours away in London, ON.) So, we end up waiting for a team from London to come down and get him transported. They get there at 2am. My husband and I leave to make it there without speeding, while they prepare to move Blake.
By the morning Blake no longer needed to be intubated and had a million more tests. When we saw the pediatric neurologist that afternoon, he said that given the frequency (and worsening severity with each episode) he felt we have no choice but to diagnose epilepsy and begin medication. He said "we cannot afford to take a 'wait and see approach' ". Blake was started on carbamazepine, which we are ramping up to the full, therapeutic dosage.
It has been an absolutely exhausting month. If you have read this much, thank you! And I look forward to hearing from you.
