I've lost count of the number of people over the last couple of weeks who have told us that they know someone who had epilepsy when they were a child, but that they outgrew it and now they're just fine. I'm torn, because I want very much to believe that, for us too, this will be a short-term thing, that it's just a little speed bump in Lizzie's life; but another part of me recalls the very grave expression on the neurologist's face and the dire predictions he was making about her future. Two conditions he mentioned as potential diagnoses for Lizzie--Ohtahara syndrome and Dravet syndrome--are not conditions that she would ever outgrow. Of course, she could also have neither of those, so until we get test results, guessing at what she might have is pointless. (As an aside, Googling conditions that your child might or might not have is an exercise in torture. I don't recommend it.) We have an appointment at the epilepsy clinic on Thursday, so I am hopeful that we'll know more then.
On a brighter note, Lizzie's been doing really well the last few days. She has not had very many seizures, and she's been smiling and looking around as any normal 4-month-old will do. I don't know if it's the anti-seizure medicine that's working so well, or the B6 or folinic acid supplements that are doing the trick, but whatever it is, we're grateful.
Friday, September 30, 2011
Thursday, September 15, 2011
Intractable
Now that she has been discharged from the hospital, Lizzie is a patient of the Intractable Epilepsy Clinic at Children's Mercy.
According to the Merriam-Webster dictionary, "intractable" means:
1. not easily governed, managed, or directed
2. not easily manipulated or wrought
3. not easily relieved or cured
It's not a particularly upbeat title for the clinic, but I suspect from all they've told us about her condition that it's fitting.
According to the Merriam-Webster dictionary, "intractable" means:
1. not easily governed, managed, or directed
2. not easily manipulated or wrought
3. not easily relieved or cured
It's not a particularly upbeat title for the clinic, but I suspect from all they've told us about her condition that it's fitting.
How did we get here?
This is a timeline of events that have occurred over the last several days.
Saturday, Sept. 10th: Lizzie had 2 seizures in the span of 5 minutes--eyes rolled back, eyelids fluttering, arms and legs jerking rhythmically. After the second one we took her to the hospital, where they drew blood, started an IV, and did a CT scan.
They transferred her to Children's Mercy, where Lizzie was admitted. The doctor mentioned several tests that might be done, but thought we might get to go home Monday.
Sunday, Sept. 11th: Lizzie continued to have seizures overnight and through the morning. The neurologists who were on call for the weekend came by to see her early Sunday afternoon. Luckily Lizzie had 2 seizures while they were in her hospital room, so they got to see exactly what we'd been describing to them (who'd have thought I'd ever say it was lucky my child had a seizure, let alone 2 of them). They immediately prescribed Keppra, an anti-seizure drug. They also took more blood and did a lumbar puncture to rule out infection.
Monday, Sept. 12th: They did an EEG and an MRI. Late in the afternoon, the neurologist came in to see Lizzie and talked with us about the results of the EEG. He was very concerned and said that her EEG did not look good. She was showing lots of seizure activity. He used the words "serious" and "severe" quite a bit throughout the conversation. He diagnosed Lizzie with "epileptic encephalopathy of infancy". The whole conversation is a little bit of a blur, but essentially the doctor talked about probable developmental delays and some possible scenarios for treatment. He mentioned that there was a very rare type of epilepsy that responds to Vitamin B6. He planned to do another EEG the next day and give her an injection of B6 while on the EEG to see if the vitamin had any effect on her seizures. He also doubled her dose of Keppra to try to control the seizures. The mood when he left our room was pretty down, to say the least. A lot of prayers were said; that I know for sure.
Tuesday, Sept. 13th: We found out that the MRI was normal, meaning there were no structural issues with her brain, no lesions, basically no indication of a cause for the seizures. Lizzie had another EEG, during which they pushed a bolus of Vitamin B6 through her IV. She screamed bloody murder; apparently B6 stings when it goes in. She also had more blood drawn and another lumbar puncture. Late in the day, the neurologist came back to her room and talked with us again. He said that he had presented her case to the entire neurology staff of the hospital and that everyone was in agreement that this was a very serious case. Her EEG still looked very bad, and the B6 had no effect on the seizures. We asked some questions, including what her long-term prognosis might be. The doctor said it was hard to say for sure until we get test results back, but that we have a very long road ahead of us. He mentioned a couple of different epileptic syndromes, one of which only has a life expectancy of a couple of years; the other involving severe developmental delays and uncontrollable seizures. The test results should take a few weeks to come back; some of them were done at Children's Mercy and some were sent off to the Mayo Clinic, so pretty much we just have to wait. He increased the Keppra again, and started her on Vitamin B6 and folinic acid. He said that even though her brain waves weren't affected by the B6 immediately, the B6 and folinic acid may help long-term with some of her symptoms. Again, the mood in the room after he left was pretty subdued and a lot more prayers were being said.
Wednesday, Sept. 14: The lumbar puncture didn't go quite as well as they'd hoped, so they weren't able to get as much fluid as they needed. They said they'd hold off on doing any more for now since she'd already been through a lot. The neurologist came in around lunchtime and chatted with us some more. We got some more questions answered and then he said we could go home. It was good to get home and be with the older girls. Now we'll just have to get used to our "new normal" with Lizzie.
Saturday, Sept. 10th: Lizzie had 2 seizures in the span of 5 minutes--eyes rolled back, eyelids fluttering, arms and legs jerking rhythmically. After the second one we took her to the hospital, where they drew blood, started an IV, and did a CT scan.
They transferred her to Children's Mercy, where Lizzie was admitted. The doctor mentioned several tests that might be done, but thought we might get to go home Monday.
Sunday, Sept. 11th: Lizzie continued to have seizures overnight and through the morning. The neurologists who were on call for the weekend came by to see her early Sunday afternoon. Luckily Lizzie had 2 seizures while they were in her hospital room, so they got to see exactly what we'd been describing to them (who'd have thought I'd ever say it was lucky my child had a seizure, let alone 2 of them). They immediately prescribed Keppra, an anti-seizure drug. They also took more blood and did a lumbar puncture to rule out infection.
Monday, Sept. 12th: They did an EEG and an MRI. Late in the afternoon, the neurologist came in to see Lizzie and talked with us about the results of the EEG. He was very concerned and said that her EEG did not look good. She was showing lots of seizure activity. He used the words "serious" and "severe" quite a bit throughout the conversation. He diagnosed Lizzie with "epileptic encephalopathy of infancy". The whole conversation is a little bit of a blur, but essentially the doctor talked about probable developmental delays and some possible scenarios for treatment. He mentioned that there was a very rare type of epilepsy that responds to Vitamin B6. He planned to do another EEG the next day and give her an injection of B6 while on the EEG to see if the vitamin had any effect on her seizures. He also doubled her dose of Keppra to try to control the seizures. The mood when he left our room was pretty down, to say the least. A lot of prayers were said; that I know for sure.
Tuesday, Sept. 13th: We found out that the MRI was normal, meaning there were no structural issues with her brain, no lesions, basically no indication of a cause for the seizures. Lizzie had another EEG, during which they pushed a bolus of Vitamin B6 through her IV. She screamed bloody murder; apparently B6 stings when it goes in. She also had more blood drawn and another lumbar puncture. Late in the day, the neurologist came back to her room and talked with us again. He said that he had presented her case to the entire neurology staff of the hospital and that everyone was in agreement that this was a very serious case. Her EEG still looked very bad, and the B6 had no effect on the seizures. We asked some questions, including what her long-term prognosis might be. The doctor said it was hard to say for sure until we get test results back, but that we have a very long road ahead of us. He mentioned a couple of different epileptic syndromes, one of which only has a life expectancy of a couple of years; the other involving severe developmental delays and uncontrollable seizures. The test results should take a few weeks to come back; some of them were done at Children's Mercy and some were sent off to the Mayo Clinic, so pretty much we just have to wait. He increased the Keppra again, and started her on Vitamin B6 and folinic acid. He said that even though her brain waves weren't affected by the B6 immediately, the B6 and folinic acid may help long-term with some of her symptoms. Again, the mood in the room after he left was pretty subdued and a lot more prayers were being said.
Wednesday, Sept. 14: The lumbar puncture didn't go quite as well as they'd hoped, so they weren't able to get as much fluid as they needed. They said they'd hold off on doing any more for now since she'd already been through a lot. The neurologist came in around lunchtime and chatted with us some more. We got some more questions answered and then he said we could go home. It was good to get home and be with the older girls. Now we'll just have to get used to our "new normal" with Lizzie.
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