In the last few weeks, Jenelle's seizures have gone from having a "big one" every two weeks, to having a "big one" weekly, to now having lengthy seizures every other day. She continues to have long tonic seizures that go over two minutes and often end transitioning into a grand mal. School has seen this seizure, as well as her daycare provider. Both agree, these tonic seizures are horrific to watch as every muscle in Jenelle's body contract and stiffen during the seizure. Poor thing has also been very lethargic often taking 3 or more naps a day this past weekend. I can't help but wonder if she is napping because of the new medication, or if she is napping because her little body is tired from so many seizures.
Over the weekend, I had a revelation about Jenelle that prompted me to use my secret "back line" to Dr. Shields today. Using the general line to get in touch with him can often take a few days for a return call, if you get a return call at all. I sent an e-mail to his nurses this afternoon and spoke to Dr. Shields this evening on my drive home from work. He agreed her seizures were going in the wrong direction and that we needed to be more aggressive with getting her onto Banzel. Instead of increasing it every two weeks, he wants to increase weekly to see how it goes. We'll start that increase tonight.
As for my revelation over the weekend, Dr. Shields was very intrigued. At a holiday dinner on Saturday, I was talking with a new friend who is a physical therapist and into holistic nutrition. We talked a bit about Jenelle and he asked me lots of questions about Jenelle's vitamin intake. My response was, "Well, she is not taking any supplements right now, however, we usually don't have to worry about that because she is eating so well by mouth. She used to get all of her needed vitamins from her formula." Then it hit me. We took Jenelle off formula in May, coincidentally around the same time Jenelle's seizures started to get worse. Could it possibly be a simple vitamin deficiency has been causing all this havoc with her seizures?
Like I said, Dr. Shields was intrigued with this idea and agreed it was something to consider. He gave me instructions this evening to start giving Jenelle 100mg Vitamin B6 a day; 50 mg in the morning, 50 at night. He said that Vitamin B6 seems to have the most connection in causing seizures, and if we add that and see a significant difference, we may be onto something.
So while the increase of seizures has been disappointing of late, we now have a new plan. Please keep us in your special thoughts and prayers that her seizures do not get worse. The last thing I want this holiday is a hospital stay. I will continue to keep you all posted. Thanks in advance for the thoughts and prayers!
Monday, December 13, 2010
Wednesday, December 01, 2010
First long trip away from home with one hiccup!
When we saw Dr. Shields on the 15th, I told him we were planning an trip to Las Vegas for a baseball tournament for Jack's travel ball team (that Brett coaches) and that we were taking Jenelle. His advice? "Take lots of Diastat, and patience."
We left for Las Vegas after Thanksgiving dinner for 5 days and 4 nights, and the coldest weather imaginable. It was Jenelle's first "multiple night" trip away from her norm, other than visiting Nana and Poppa in Visalia. The drive out was great and we made it to Las Vegas in 3 and 1/2 hours. Jenelle slept the whole way, but upon our 11:30 p.m. arrival, she was awake and not very interested in sleep. The first night was tough, and in all Jenelle had about 5 to 6 hours of sleep total.
The team's first game was at 1:00 p.m. on Friday, and it was about 46 degrees. Jenelle had been a little whiny, but seemed to be adjusting to the cold all bundled up. During the first game, she was very happy and giggly, then she had a 4 minute absence seizure, where she was twitching, and non-responsive. Immediately as she came out of the seizure, she began crying and was very agitated. I had a feeling it wasn't the last one we'd see.
Once I calmed her down and got her to stop crying, I put her in her stroller. Aunti Nicki was sitting with me when Jenelle began to have a tonic seizure (where all of her muscles constrict). Her legs went stiff and her arms were out straight. Usually a tonic seizure like this for Jenelle lasts less than a minute, but as I watched the clock, this seizure went on for over two minutes. As her face became cyanotic and blue, I handed my cell phone to Nicki and pulled out the Diastat. The tonic seizure then turned into a grand mal and Jenelle started convulsing. I told Nicki to call 911, and pulled Jenelle from her chair to take her to an area where I could put her on the ground. I rolled her to her side and was about to administer Diastat when she stopped.
Our baseball friends unfortunately had seen this before, and ran to help me with blankets. When the paramedics arrived, Jenelle was not seizing, but when we told them she had had two seizures within a half an hour, they told me they had to take her to the ER. I was thankful just to get the reassurance.
We were transported by ambulance to St. Rose Hospital in Henderson. If you ever have to go to the ER in Vegas, I would highly recommend this one. As Jenelle's gurney was taken out of the ambulance, we were met by a nurse and a doctor, both asking me lots of questions. Within minutes, they had called UCLA to get a plan, and took blood and urine to rule out infection. I explained to the doctor all of Jenelle's history, and that her seizures had been out of control of late. I told him she was "due" for a big seizure, and that we had just started Banzel (ironically that Monday!) The doctor had never heard of Banzel or Vimpat, but he was familiar with Dr. Shields, though they had never met.
Once the blood work and urine came back normal, the doctor was about to let us leave, confident that I was comfortable using Diastat if needed. As he started to discharge us, Jenelle decided to have another seizure, which changed the doctor's plan a bit. They administered IV Diazapam (Valium) and let Jenelle sleep it off for an hour. Once she woke up and became alert, they let us go home... to our hotel.
The remainder of the weekend was uneventful seizure wise. Jack's team played 6 games and ended up in the top 4 out of 15 teams in the tournament, losing in the semi-final. After the ordeal with the bad seizures and trip to the ER, Jenelle couldn't have been a better Angel. She loved snuggling in bed in the early morning, and loved the free breakfast buffet at our hotel. Jack of course was excited to be with friends, playing baseball in another state!
We got home on Monday evening to avoid traffic out of Vegas. Ironically, a letter from Dr. Shields office scheduling our next appointment for March was waiting in our mailbox. I have a call into him to see if he wants to see her sooner. UCLA told our Henderson doctor that they did not think the Banzel was working yet, and that it sometimes took almost 3 months before you started to notice it working. For now, the plan is to keep things the same (medication wise) and wait to hear from Dr. Shields.
I cannot believe the holidays are here, and with the weekend after Thanksgiving spent in Las Vegas watching baseball, I feel a little behind on things like decorating and Christmas cards. Speaking of Christmas, we were watching Rudolph the Red Nosed Reindeer tonight, and I couldn't help but think of Jenelle as Rudolph. A little different than the rest, but so much to give the world.
Thank you for the continued prayers. I'll keep you posted!
We left for Las Vegas after Thanksgiving dinner for 5 days and 4 nights, and the coldest weather imaginable. It was Jenelle's first "multiple night" trip away from her norm, other than visiting Nana and Poppa in Visalia. The drive out was great and we made it to Las Vegas in 3 and 1/2 hours. Jenelle slept the whole way, but upon our 11:30 p.m. arrival, she was awake and not very interested in sleep. The first night was tough, and in all Jenelle had about 5 to 6 hours of sleep total.
The team's first game was at 1:00 p.m. on Friday, and it was about 46 degrees. Jenelle had been a little whiny, but seemed to be adjusting to the cold all bundled up. During the first game, she was very happy and giggly, then she had a 4 minute absence seizure, where she was twitching, and non-responsive. Immediately as she came out of the seizure, she began crying and was very agitated. I had a feeling it wasn't the last one we'd see.
Once I calmed her down and got her to stop crying, I put her in her stroller. Aunti Nicki was sitting with me when Jenelle began to have a tonic seizure (where all of her muscles constrict). Her legs went stiff and her arms were out straight. Usually a tonic seizure like this for Jenelle lasts less than a minute, but as I watched the clock, this seizure went on for over two minutes. As her face became cyanotic and blue, I handed my cell phone to Nicki and pulled out the Diastat. The tonic seizure then turned into a grand mal and Jenelle started convulsing. I told Nicki to call 911, and pulled Jenelle from her chair to take her to an area where I could put her on the ground. I rolled her to her side and was about to administer Diastat when she stopped.
Our baseball friends unfortunately had seen this before, and ran to help me with blankets. When the paramedics arrived, Jenelle was not seizing, but when we told them she had had two seizures within a half an hour, they told me they had to take her to the ER. I was thankful just to get the reassurance.
We were transported by ambulance to St. Rose Hospital in Henderson. If you ever have to go to the ER in Vegas, I would highly recommend this one. As Jenelle's gurney was taken out of the ambulance, we were met by a nurse and a doctor, both asking me lots of questions. Within minutes, they had called UCLA to get a plan, and took blood and urine to rule out infection. I explained to the doctor all of Jenelle's history, and that her seizures had been out of control of late. I told him she was "due" for a big seizure, and that we had just started Banzel (ironically that Monday!) The doctor had never heard of Banzel or Vimpat, but he was familiar with Dr. Shields, though they had never met.
Once the blood work and urine came back normal, the doctor was about to let us leave, confident that I was comfortable using Diastat if needed. As he started to discharge us, Jenelle decided to have another seizure, which changed the doctor's plan a bit. They administered IV Diazapam (Valium) and let Jenelle sleep it off for an hour. Once she woke up and became alert, they let us go home... to our hotel.
The remainder of the weekend was uneventful seizure wise. Jack's team played 6 games and ended up in the top 4 out of 15 teams in the tournament, losing in the semi-final. After the ordeal with the bad seizures and trip to the ER, Jenelle couldn't have been a better Angel. She loved snuggling in bed in the early morning, and loved the free breakfast buffet at our hotel. Jack of course was excited to be with friends, playing baseball in another state!
We got home on Monday evening to avoid traffic out of Vegas. Ironically, a letter from Dr. Shields office scheduling our next appointment for March was waiting in our mailbox. I have a call into him to see if he wants to see her sooner. UCLA told our Henderson doctor that they did not think the Banzel was working yet, and that it sometimes took almost 3 months before you started to notice it working. For now, the plan is to keep things the same (medication wise) and wait to hear from Dr. Shields.
I cannot believe the holidays are here, and with the weekend after Thanksgiving spent in Las Vegas watching baseball, I feel a little behind on things like decorating and Christmas cards. Speaking of Christmas, we were watching Rudolph the Red Nosed Reindeer tonight, and I couldn't help but think of Jenelle as Rudolph. A little different than the rest, but so much to give the world.
Thank you for the continued prayers. I'll keep you posted!
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