I haven't posted an update in a while, mostly because things have been changing so quickly that it was hard to know exactly what to say. But if I'm going to do it, I thought I'd better do it now, or the update would end up even longer than its already ridiculous length! Hopefully someone finds this helpful!
My 16-year old daughter had her first seizures last September. She had 3 seizures in one afternoon (complex partial with secondary generalization); she was put on Keppra and had no further seizures, but terrible emotional side effects, which took about 4-5 months to manifest themselves completely. After consulting with her doctor, and taking into consideration that 3 seizures within 24 hours are generally not sufficient for an epilepsy diagnosis (both her EEG and MRI were clean), we decided to pull her off the Keppra and not give her any medication at all. We were hoping that it was a one-time thing.
When I lasted posted here, in April, we had just taken her off the Keppra. We had seven blissful seizure- and medication-free weeks (and all of her emotional issues cleared up). Fast forward to early June, and she had another seizure, same type as before - so the initial epilepsy diagnosis was confirmed. Ugh. She had a service trip to Thailand with an international program planned at the beginning of July, so we needed to find a medication that she could titrate up quickly. We had about 4 weeks to find something that worked and get her stabilized.
First we tried Trileptal - it worked very well, and initially side effects were minimal, but she had an allergic reaction (head to toe hives) after 8 days on Trileptal. Now we had only 10 days to get her on a new medication before she was leaving! So we tried Onfi next - and it was amazing for her! No seizures, no side effects (she says it doesn't even feel like she's taking anything).
Throughout this process her neurologist was amazing to work with - he was as committed that she get to do this trip as we were. We are lucky to live near a Level 4 Pediatric Epilepsy Center (CHOP). So far her seizures have always been very easy to control with medication; it's just the side effects we have had issues with. If that wasn't the case we probably wouldn't have been able to think about sending her at all, so I am very grateful!
She flew to Thailand on June 30th and has been having the time of her life! But of course, the adventures continued . . .
Yesterday, in Chiang Mai Thailand, she had another seizure. She forgot her morning medication dose, and had a seizure 3 hours later - she was taken to the ER by her program there, and then to a private hospital. At first we weren't sure what had happened (she really thought she had taken her meds that day), but at about 4pm they confirmed that she had skipped her morning dose. They then gave her the missed dose - and she turned around and had ANOTHER seizure shortly after that, before the med had a chance to be absorbed. This really freaked everyone out!
Dealing with this when she is 8000 miles away has been very challenging! The doctors there (in my opinion) really overreacted, particularly since we had figured out that her seizures had been triggered by a missed medication dose. All of her seizures were the same type she had before, lasted only about 60-90 seconds, were totally self-limiting and she recovered fully afterwards. Nonetheless, they put her in the Thai version of the ICU (she was on oxygen and an IV), dosed her with Valium after her second seizure, and added a completely new medication (Lyrica) to her regimen without talking to us or to her doctors here. I had to talk them out of giving her a CT scan! They kept her in overnight (which I didn't have an issue with), but wanted to keep her in the hospital an additional 24 hours for observation!
I spent all of yesterday in communication with her doctors here, with the program headquarters, and with the people on the ground in Thailand. I finally got her program to understand that as long as she was taking her meds, and didn't miss any more doses, it was HIGHLY likely that she was going to be absolutely fine. In fact, I believe we just proved that the Onfi has been working well! Once they understood that, they realized that keeping her in the hospital longer was a bad idea (she was miserable, stressed, and having trouble sleeping). I then got my doctor to e-mail me her medication orders, which they then showed the doctors in Thailand. Long story short, she was released from the hospital this morning, and they followed our doctor's orders. She is increasing her evening Onfi dose, but keeping the morning dose the same - and we'll revisit everything when she returns next week. She still has to get through the lonnnnggg flight home, so my fingers are still crossed, but I am truly hoping that all will continue to be well. And there are so many things to be grateful for (her seizure was in a museum, not on the back of an elephant, or while she was on a trek - I could go on and on) - so despite the stress and the fear I felt when I found out she had had a seizure there, and how horrible it is that she has to deal with this at all, I feel very blessed.
She has learned a painful lesson about medication management - one that at 16 she really needed to learn. I am a bit concerned that the seizure happened so quickly after the missed dose. In the past she has had a lot more wiggle room: she occasionally missed doses of Keppra with no problems, and was med-free for 7 weeks with no seizures. So either there's a trigger that we don't know about (food? stress of being in another country? elevation?), her med dose was too low, or her seizure pattern has shifted. All of that will need to be explored with her doctor when she returns.
But despite this, I have no regrets at all letting her go on this trip! As you can imagine, I second-guessed these plans a lot in June when we were dealing with all the med changes. And she has been amazing and strong throughout everything - she was totally open from the get-go about her epilepsy with the girls on her program, and so they were not taken completely by surprise when it happened. I am so very very proud of her for her courage and openness.
If you've read through all of this you are amazing! I hope that someone finds hope or guidance in our experiences! I'll keep you updated as her life unfolds.
My 16-year old daughter had her first seizures last September. She had 3 seizures in one afternoon (complex partial with secondary generalization); she was put on Keppra and had no further seizures, but terrible emotional side effects, which took about 4-5 months to manifest themselves completely. After consulting with her doctor, and taking into consideration that 3 seizures within 24 hours are generally not sufficient for an epilepsy diagnosis (both her EEG and MRI were clean), we decided to pull her off the Keppra and not give her any medication at all. We were hoping that it was a one-time thing.
When I lasted posted here, in April, we had just taken her off the Keppra. We had seven blissful seizure- and medication-free weeks (and all of her emotional issues cleared up). Fast forward to early June, and she had another seizure, same type as before - so the initial epilepsy diagnosis was confirmed. Ugh. She had a service trip to Thailand with an international program planned at the beginning of July, so we needed to find a medication that she could titrate up quickly. We had about 4 weeks to find something that worked and get her stabilized.
First we tried Trileptal - it worked very well, and initially side effects were minimal, but she had an allergic reaction (head to toe hives) after 8 days on Trileptal. Now we had only 10 days to get her on a new medication before she was leaving! So we tried Onfi next - and it was amazing for her! No seizures, no side effects (she says it doesn't even feel like she's taking anything).
Throughout this process her neurologist was amazing to work with - he was as committed that she get to do this trip as we were. We are lucky to live near a Level 4 Pediatric Epilepsy Center (CHOP). So far her seizures have always been very easy to control with medication; it's just the side effects we have had issues with. If that wasn't the case we probably wouldn't have been able to think about sending her at all, so I am very grateful!
She flew to Thailand on June 30th and has been having the time of her life! But of course, the adventures continued . . .
Yesterday, in Chiang Mai Thailand, she had another seizure. She forgot her morning medication dose, and had a seizure 3 hours later - she was taken to the ER by her program there, and then to a private hospital. At first we weren't sure what had happened (she really thought she had taken her meds that day), but at about 4pm they confirmed that she had skipped her morning dose. They then gave her the missed dose - and she turned around and had ANOTHER seizure shortly after that, before the med had a chance to be absorbed. This really freaked everyone out!
Dealing with this when she is 8000 miles away has been very challenging! The doctors there (in my opinion) really overreacted, particularly since we had figured out that her seizures had been triggered by a missed medication dose. All of her seizures were the same type she had before, lasted only about 60-90 seconds, were totally self-limiting and she recovered fully afterwards. Nonetheless, they put her in the Thai version of the ICU (she was on oxygen and an IV), dosed her with Valium after her second seizure, and added a completely new medication (Lyrica) to her regimen without talking to us or to her doctors here. I had to talk them out of giving her a CT scan! They kept her in overnight (which I didn't have an issue with), but wanted to keep her in the hospital an additional 24 hours for observation!
I spent all of yesterday in communication with her doctors here, with the program headquarters, and with the people on the ground in Thailand. I finally got her program to understand that as long as she was taking her meds, and didn't miss any more doses, it was HIGHLY likely that she was going to be absolutely fine. In fact, I believe we just proved that the Onfi has been working well! Once they understood that, they realized that keeping her in the hospital longer was a bad idea (she was miserable, stressed, and having trouble sleeping). I then got my doctor to e-mail me her medication orders, which they then showed the doctors in Thailand. Long story short, she was released from the hospital this morning, and they followed our doctor's orders. She is increasing her evening Onfi dose, but keeping the morning dose the same - and we'll revisit everything when she returns next week. She still has to get through the lonnnnggg flight home, so my fingers are still crossed, but I am truly hoping that all will continue to be well. And there are so many things to be grateful for (her seizure was in a museum, not on the back of an elephant, or while she was on a trek - I could go on and on) - so despite the stress and the fear I felt when I found out she had had a seizure there, and how horrible it is that she has to deal with this at all, I feel very blessed.
She has learned a painful lesson about medication management - one that at 16 she really needed to learn. I am a bit concerned that the seizure happened so quickly after the missed dose. In the past she has had a lot more wiggle room: she occasionally missed doses of Keppra with no problems, and was med-free for 7 weeks with no seizures. So either there's a trigger that we don't know about (food? stress of being in another country? elevation?), her med dose was too low, or her seizure pattern has shifted. All of that will need to be explored with her doctor when she returns.
But despite this, I have no regrets at all letting her go on this trip! As you can imagine, I second-guessed these plans a lot in June when we were dealing with all the med changes. And she has been amazing and strong throughout everything - she was totally open from the get-go about her epilepsy with the girls on her program, and so they were not taken completely by surprise when it happened. I am so very very proud of her for her courage and openness.
If you've read through all of this you are amazing! I hope that someone finds hope or guidance in our experiences! I'll keep you updated as her life unfolds.
