Two weeks ago, I made the trip up to UCLA for my follow up with Dr. Territo. All is well with my numbers, and she wanted me to start another course of ATRA (Vitamin A Chemo.) The last 14 days have been exhausting as I've been taking 3 different chemo meds. Not to mention theo painful dry skin and cracked lips that go with the high dose of Vitamin A. Thankfully, tomorrow is the last day!
A few days later, I had a follow up appointment with my Opthamololgist at Hoag. I was diagnosed with Glaucoma many years ago, and before my cancer the doctor checked my pressures every six months. Since the cancer, and the chemo, she sees me ever 4 months as chemo can sometimes affect the eyes in unwanted ways. What was supposed to be a quick check of my pressures, turned into a much longer visit when I told the doctor that I was seeing small "spinners" in the visual field of my left eye. Upon further examination, I confirmed that there is a small area in the visual field of my left eye that "spins" or doesn't actually focus. When I cover the left eye to check the right vision, the same area is black. Apparently, this was concerning to the doctor. Disturbance in the visual field of this kind can often indicate problems in the brain behind the optic nerve. The doctor believes this is simply some damage from my chemotherapy, but wants an MRI, and an exam with a "retina specialist" for further tests. Not sure there is anything to worry about, but I will keep you posted. Right now, I'm just considering it as a "better safe than sorry" thing that usually happens to me in my post cancer life.
The other trip to UCLA was for Jenelle. We traveled today to UCLA for her 6 month follow up with Dr. Shields. We told Dr. Shields that Jenelle's seizures were still the same, but had decreased in duration somewhat (i.e. instead of a 4 minute grand mal, they last for 2 minutes.) Dr. Shields agrees that Banzel could be helping, but wants to get her off the Vimpat before we fully asses its value. I started the Vimpat wean tonight, and it should take 8 weeks to finish.
I asked Dr. Shields if he felt Jenelle would be a good candidate for the Vagus Nerve Stimulator (VNS). He said it was something to consider, and he will present her case to the neurosurgeon at UCLA for his opinion. We'll hear from them later if they think Jenelle would be a good candidate. As for now, we will stick with the medications and their doses, except for the Vimpat wean.
And, we received a bit of sad news today. The wonderful class with the County of Orange where Jenelle has been a student for 2 years is going to be closed June 30. This is the 4th year that the County has had to cut classes. This means Jenelle will need to be transitioned into a new severe to moderate class for special needs students; and most likely at a new school. I spoke with the County Principal today, and indicated that I wanted to tour all of our options, including the County Program in Anaheim, the County Program in Irvine, and the Severe to Moderate Classes in Tustin. Two years ago, it was my belief that the Tustin program was not a good fit for Jenelle, however, their program has been in place now for 2 years, and of course, Jenelle has changed as well. I am keeping an open mind about all of the programs in our area, and hope the transition will be a smooth one.
That is all for now! Thanks for the continued prayers and positive thoughts. I'll keep you posted!
Monday, March 14, 2011
Tuesday, February 22, 2011
You know you've been to the ER too many times when ...
... you get a message on your answering machine from your child's doctor, stating that your insurance has requested the doctor contact you to "remind" you to try to "seek help from your general practitioner, GI Specialist, and/or Neurologist during weekdays and work hours as opposed to going to the ER for non-emergencies." OH REALLY!?! I had no idea that is how it is supposed to work!
Silly me. And here, I thought that maybe, just maybe when your child's mic-key button has been out for an unknown length of time, and you had trouble inserting it yourself, so instead of puncturing your child's stomach you thought it might be best to take her to the ER, just in case she needed surgery.
And silly me. It wasn't my fault that Jenelle had a grand mal at school that lasted over 9 minutes, and they couldn't give her Diastat, so rather than risk a permanent seizure state or further brain damage, they called 911 and had her transported to the ER so she could get IV seizure medication.
And silly, silly me. When I was uncertain as to whether or not my child had swallowed a pony tail holder, and she didn't poop for 4 days and was crying inconsolably I decided she needed an x-ray and went to the ER; in case she needed surgery. Only to learn later the poor child was constipated.
Maybe if my child could talk, I wouldn't abuse the ER so much. Maybe I like the special treatment and attention I get when I taker her to the ER. Maybe I enjoy subjecting my immune compromised child as well as my post-cancer/chemotherapy immune compromised self to the endless patients lining the halls with fevers, coughs and vomit at the ER in hope of getting sicker.
Hmmmm. Wait just a minute. Let's hear that again. Oh yeah. I'm the one forcing my child to make needless trips to the ER for "non-urgent" things like seizures and a missing mic-key button. I'm the reason it takes at least 4 hours to get in and out of the ER, even when you arrive via ambulance. Certainly not the endless individuals lining the chairs and hallways with their cold germs and flu. Certainly, their medical needs are much more "urgent" than mine because we all know, only the ER has the cure for the common cold and the flu, but they just won't let those darn general practitioners in on it.
Or maybe... just maybe... Its because I actually have insurance... therefore the ER has a way in which to contact me to request I not come in so frequently for "non-urgent" matters; as opposed to all those other patients without insurance who are there because they really don't want to fork out money to a doctor when they can get health care at the ER for free.
Yeah, that's it. That's the ticket.
~~~~~~~~~~~~~
In all seriousness; there was an actual message on our answering machine last Friday from Jenelle's pediatrician, Dr. Patel - whom I love and adore with all my heart. She actually said on the machine that my insurance asked her to call, to make sure I knew not to use the ER for "non-urgent" issues that could best be handled by her, Jenelle's GI or Jenelle's Neurologist. I called her back and we both had a good laugh, but she said that Jenelle's medical group (St. Joseph's Heritage Medical Group) was really "cracking down" on people who frequent the ER. I told her, "You know me. You know I'm not going to the ER unless it wasn't absolutely necessary." She agreed, but said she was just doing her job. She had received a letter from Jenelle's medical group instructing her to call me to discuss the issue. I can totally respect that. I just hope St. Joseph/CHOC ER is reaching out to the real offenders; the patients that go to the ER because they don't have insurance or a real doctor.
Thank you for listening to my rant. Now, for your viewing pleasure, I want to share a video clip I took on Monday of Jack and Jenelle "jumping" together at the Little League field. Jenelle can jump a whole lot better than she does in this video, but it was just too cute not to share. Jack has turned into a wonderful, caring big brother and loves to give Jenelle hugs, hold her hand when we walk her places and take care of his special little sis. It just makes me happy to see the two actually starting to have a sibling relationship.
Enjoy!
Silly me. And here, I thought that maybe, just maybe when your child's mic-key button has been out for an unknown length of time, and you had trouble inserting it yourself, so instead of puncturing your child's stomach you thought it might be best to take her to the ER, just in case she needed surgery.
And silly me. It wasn't my fault that Jenelle had a grand mal at school that lasted over 9 minutes, and they couldn't give her Diastat, so rather than risk a permanent seizure state or further brain damage, they called 911 and had her transported to the ER so she could get IV seizure medication.
And silly, silly me. When I was uncertain as to whether or not my child had swallowed a pony tail holder, and she didn't poop for 4 days and was crying inconsolably I decided she needed an x-ray and went to the ER; in case she needed surgery. Only to learn later the poor child was constipated.
Maybe if my child could talk, I wouldn't abuse the ER so much. Maybe I like the special treatment and attention I get when I taker her to the ER. Maybe I enjoy subjecting my immune compromised child as well as my post-cancer/chemotherapy immune compromised self to the endless patients lining the halls with fevers, coughs and vomit at the ER in hope of getting sicker.
Hmmmm. Wait just a minute. Let's hear that again. Oh yeah. I'm the one forcing my child to make needless trips to the ER for "non-urgent" things like seizures and a missing mic-key button. I'm the reason it takes at least 4 hours to get in and out of the ER, even when you arrive via ambulance. Certainly not the endless individuals lining the chairs and hallways with their cold germs and flu. Certainly, their medical needs are much more "urgent" than mine because we all know, only the ER has the cure for the common cold and the flu, but they just won't let those darn general practitioners in on it.
Or maybe... just maybe... Its because I actually have insurance... therefore the ER has a way in which to contact me to request I not come in so frequently for "non-urgent" matters; as opposed to all those other patients without insurance who are there because they really don't want to fork out money to a doctor when they can get health care at the ER for free.
Yeah, that's it. That's the ticket.
~~~~~~~~~~~~~
In all seriousness; there was an actual message on our answering machine last Friday from Jenelle's pediatrician, Dr. Patel - whom I love and adore with all my heart. She actually said on the machine that my insurance asked her to call, to make sure I knew not to use the ER for "non-urgent" issues that could best be handled by her, Jenelle's GI or Jenelle's Neurologist. I called her back and we both had a good laugh, but she said that Jenelle's medical group (St. Joseph's Heritage Medical Group) was really "cracking down" on people who frequent the ER. I told her, "You know me. You know I'm not going to the ER unless it wasn't absolutely necessary." She agreed, but said she was just doing her job. She had received a letter from Jenelle's medical group instructing her to call me to discuss the issue. I can totally respect that. I just hope St. Joseph/CHOC ER is reaching out to the real offenders; the patients that go to the ER because they don't have insurance or a real doctor.
Thank you for listening to my rant. Now, for your viewing pleasure, I want to share a video clip I took on Monday of Jack and Jenelle "jumping" together at the Little League field. Jenelle can jump a whole lot better than she does in this video, but it was just too cute not to share. Jack has turned into a wonderful, caring big brother and loves to give Jenelle hugs, hold her hand when we walk her places and take care of his special little sis. It just makes me happy to see the two actually starting to have a sibling relationship.
Enjoy!
Tuesday, February 08, 2011
Less seizures, but still fighting the seizure monster!
When I haven't updated in a while, it can mean many things; Jenelle is sick, I'm sick, We're just really busy, and/or I'm just don't want to jinx anything. This time, it's the later of those choices!
Since getting to the full dose on Banzel, we've started to see some decrease in seizures for Jenelle. And by that I mean... instead of big seizures every other day/week, we're seeing more time pass between episodes of seizure clusters. Improvement? Yes, you could say that. I've been biting my tongue, and knocking on wood, and just when I want to say things are better, Jenelle has another bad seizure day. Yesterday was one of them.
Thankfully, we now have a very good action plan in place for days when Jenelle has bad seizures. A few weeks ago, the family had been planning to attend a baseball tournament for Brett and Jack's travel ball team. It was rainy and cold, but Jenelle and I never miss an opportunity to watch her brother play baseball... unless of course she has a 4 minute grand mal. After her lengthy seizures, Jenelle usually falls asleep (in a "post-ictal" seizure state) for anywhere from a half an hour to two hours. So I stayed home with Jenelle while the boys played baseball (and won the tournament) in the rain.
Yesterday, Jenelle woke us with a grand mal lasting a little more than a minute (we think) at 6:00 AM. We never really can tell how long she has been seizing when she is sleeping, but I hear the familiar vocal noises and both Brett and I sat in bed silently for a minute, before I got up to check on her. It was one of those parenting moments when you lie in bed, double check that you heard what you heard, and wait to see if your spouse will get up instead. Of course, Jenelle was post-ictal for a while after, and I went back to bed turning off my alarm instead of hitting snooze. We woke frantically with 10 minutes to get Jack out the door for school. Nice way to start a Monday! On my way to work, I called Jenelle's teacher to give her a head's up. A few hours later, she called concerned as Jenelle had a drop seizure, and was again sleeping. After a few more seizures, I decided to get Jenelle from school, because my time was better spent watching her sleep at home, instead of ending up in the ER should the seizures get worse. Jenelle had a few more at home, but by dinner time was her old self again.
Speaking of dinner and food, Jenelle had a follow up last week with Dr. Idries, her GI doctor. Since stopping formula last May, Jenelle has lost 3 pounds, and went from being in the 75th percentile to the 25th percentile for weight. Dr. Idries wants to give her 3 more months without formula, but her her weight doesn't come back, we may be back on formula. I'm not too concerned as Jenelle is very healthy. In fact, at our last visit the doctor thought Jenelle was over weight, so I'm not really sure how 3 pounds made such a difference. So, instead of water and juice, Jenelle is getting more whole milk with her meals, and hopefully gaining some of that weight back!
As for the seizure improvement, I e-mailed Dr. Shields a few weeks ago to see if we could start weaning the Vimpat, but he would rather give it more time. We see him again in March. That is all for now. The kids are getting ready for baseball as opening day is two weeks away.
Thanks for the continued prayers. I'll keep you posted!
Since getting to the full dose on Banzel, we've started to see some decrease in seizures for Jenelle. And by that I mean... instead of big seizures every other day/week, we're seeing more time pass between episodes of seizure clusters. Improvement? Yes, you could say that. I've been biting my tongue, and knocking on wood, and just when I want to say things are better, Jenelle has another bad seizure day. Yesterday was one of them.
Thankfully, we now have a very good action plan in place for days when Jenelle has bad seizures. A few weeks ago, the family had been planning to attend a baseball tournament for Brett and Jack's travel ball team. It was rainy and cold, but Jenelle and I never miss an opportunity to watch her brother play baseball... unless of course she has a 4 minute grand mal. After her lengthy seizures, Jenelle usually falls asleep (in a "post-ictal" seizure state) for anywhere from a half an hour to two hours. So I stayed home with Jenelle while the boys played baseball (and won the tournament) in the rain.
Yesterday, Jenelle woke us with a grand mal lasting a little more than a minute (we think) at 6:00 AM. We never really can tell how long she has been seizing when she is sleeping, but I hear the familiar vocal noises and both Brett and I sat in bed silently for a minute, before I got up to check on her. It was one of those parenting moments when you lie in bed, double check that you heard what you heard, and wait to see if your spouse will get up instead. Of course, Jenelle was post-ictal for a while after, and I went back to bed turning off my alarm instead of hitting snooze. We woke frantically with 10 minutes to get Jack out the door for school. Nice way to start a Monday! On my way to work, I called Jenelle's teacher to give her a head's up. A few hours later, she called concerned as Jenelle had a drop seizure, and was again sleeping. After a few more seizures, I decided to get Jenelle from school, because my time was better spent watching her sleep at home, instead of ending up in the ER should the seizures get worse. Jenelle had a few more at home, but by dinner time was her old self again.
Speaking of dinner and food, Jenelle had a follow up last week with Dr. Idries, her GI doctor. Since stopping formula last May, Jenelle has lost 3 pounds, and went from being in the 75th percentile to the 25th percentile for weight. Dr. Idries wants to give her 3 more months without formula, but her her weight doesn't come back, we may be back on formula. I'm not too concerned as Jenelle is very healthy. In fact, at our last visit the doctor thought Jenelle was over weight, so I'm not really sure how 3 pounds made such a difference. So, instead of water and juice, Jenelle is getting more whole milk with her meals, and hopefully gaining some of that weight back!
As for the seizure improvement, I e-mailed Dr. Shields a few weeks ago to see if we could start weaning the Vimpat, but he would rather give it more time. We see him again in March. That is all for now. The kids are getting ready for baseball as opening day is two weeks away.
Thanks for the continued prayers. I'll keep you posted!
Monday, January 17, 2011
Remembering Dr. King and taking his dream to new heights
Today is Dr. Martin Luther King, Jr. day in the United States. It is exciting to know that Jack cannot fathom the idea of racism and prejudice. However, sadly, members of our community continue to fight stigma and prejudice. I believe there is a "group" of individuals in the world that are just beginning their fight for equal rights in our society. These individuals are not separated by color, sex, age or economic status. I'd like to see Dr. King's "Dream" fulfilled in this way...
I share that dream with you Dr. King. We've come so far, but we still have more to do. Will you help me make this dream a reality?
"I say to you today, my friends, so even though we face the difficulties of
today and tomorrow, I still have a dream. It is a dream deeply rooted in the
American dream. I have a dream that one day this nation will rise up and
live out the true meaning of its creed:
We hold these truths to be self-evident: that all men are created equal.
I have a dream that one day on the red hills of Georgia [people living with
physical and mental disabilities and people without disabilities] will be able
to sit down together at the table of brotherhood...I have a dream that [children
with special needs] will one day live in a nation where they will not be judged
by [their disability] but by the content of their character. I have a
dream today."
I share that dream with you Dr. King. We've come so far, but we still have more to do. Will you help me make this dream a reality?
Sunday, January 02, 2011
Welcome 2011!
Well, if I had any grand hopes that the New Year was going to be seizure free for Jenelle, they went out the window this morning when Jenelle had another 4 minute grand mal. I've been home with Jenelle all week as she is on break without daycare, and I still honestly think we may be on the tail end of getting her meds right. Since adding Vitamin B6 and finally making it to the prescribed dose of Banzel, there has been some noticeable improvement with her absence seizures (i.e. - we are seeing less!) It is still too early to tell, and Dr. Shields said it could take at least 6 weeks at the prescribed dose of Banzel until we start seeing a significant difference. So, the seizure today while discouraging, is still acceptable in that we don't have to give up just yet. I'm encouraged that at least one seizure type seems to have improved, although I hate watching a grand mal as they are so horrific.
And, Jenelle had a trip to the ER this week, but for once it was not seizure related. As Elmo on Sesame Street says, "Everybody poops!" to which I say "except Jenelle!" Poor Miss Jenelle has been dealing with a horrible bout of constipation since before Christmas. Last Tuesday, Nicki and I took the kids to Irvine Park with a picnic lunch from Burger King. As I was feeding Jenelle a cheeseburger, she began to scream and cry. Jenelle loves her food, so this was definitely not normal. I started to think back in my mind, and realized her last significant BM was on Christmas Eve. Ironically, the day before Jenelle had swallowed what I think may have been a pony tail holder. I then started to do the math, and worried that she had an obstruction or blocked intestine. I left the boys with Nicki at Irvine Park and Grandma met us at the gate and took us to the ER.
The ER was jammed packed, and it took us 2 1/2 hours just to get to triage. When taking her vitals, I joked with the nurse and suggested we just get an x-ray while we were still waiting in the lobby. She actually agreed that it would be a good idea to speed things along. Half an hour later, we were called back for an x-ray; an hour after that we finally saw a doctor. The good news is that they could not see an obstruction, and the bad that Jenelle was full of stool. Two adult sized enemas later and she passed some stool, but not what we were hoping for. The doctor sent us home with advice to give her Miralax daily for the next 6 months. We think her medication could be making her constipation worse.
Since coming home, Jenelle has had a hard time (no pun intended) with her bowel movements. The only way she has passed stool is from the help of a glycerin suppository or an enema. I called our pediatrician two days later for advice, and he said not to worry as long as we were getting something out. He warned not to use the laxatives and enemas too frequently because she could become at risk of becoming dependant on them. Every other day was acceptable.
Other than the BM issue and today's seizures, it has been a wonderful holiday. I've been meaning to post photos, but find that when I have a few spare moments, a nap is more attractive than playing on the laptop. I'm doing well and (knock on wood) have managed to avoid illness this holiday. Even with the 6 hours in the ER for Jenelle.
Jack celebrated his 10th birthday on Saturday. We had 7 boys spend the night on New Year's Eve and celebrated his birthday for once with friends on the actual day. Last night before going to bed, Jack announced that he was now a "tween". Oh boy, here we go!
I really think 2011 is going to be a fantastic year, and I'm not just saying that because 11 is my lucky number. I think we'll finally gain back the seizure control we lost for Jenelle and my health should continue to improve as well. My only New Year's Resolution is to finish chemotherapy this year; and if all goes well, that will happen in August!
Thank you for continued thoughts and prayers. I'll post some photos soon!
And, Jenelle had a trip to the ER this week, but for once it was not seizure related. As Elmo on Sesame Street says, "Everybody poops!" to which I say "except Jenelle!" Poor Miss Jenelle has been dealing with a horrible bout of constipation since before Christmas. Last Tuesday, Nicki and I took the kids to Irvine Park with a picnic lunch from Burger King. As I was feeding Jenelle a cheeseburger, she began to scream and cry. Jenelle loves her food, so this was definitely not normal. I started to think back in my mind, and realized her last significant BM was on Christmas Eve. Ironically, the day before Jenelle had swallowed what I think may have been a pony tail holder. I then started to do the math, and worried that she had an obstruction or blocked intestine. I left the boys with Nicki at Irvine Park and Grandma met us at the gate and took us to the ER.
The ER was jammed packed, and it took us 2 1/2 hours just to get to triage. When taking her vitals, I joked with the nurse and suggested we just get an x-ray while we were still waiting in the lobby. She actually agreed that it would be a good idea to speed things along. Half an hour later, we were called back for an x-ray; an hour after that we finally saw a doctor. The good news is that they could not see an obstruction, and the bad that Jenelle was full of stool. Two adult sized enemas later and she passed some stool, but not what we were hoping for. The doctor sent us home with advice to give her Miralax daily for the next 6 months. We think her medication could be making her constipation worse.
Since coming home, Jenelle has had a hard time (no pun intended) with her bowel movements. The only way she has passed stool is from the help of a glycerin suppository or an enema. I called our pediatrician two days later for advice, and he said not to worry as long as we were getting something out. He warned not to use the laxatives and enemas too frequently because she could become at risk of becoming dependant on them. Every other day was acceptable.
Other than the BM issue and today's seizures, it has been a wonderful holiday. I've been meaning to post photos, but find that when I have a few spare moments, a nap is more attractive than playing on the laptop. I'm doing well and (knock on wood) have managed to avoid illness this holiday. Even with the 6 hours in the ER for Jenelle.
Jack celebrated his 10th birthday on Saturday. We had 7 boys spend the night on New Year's Eve and celebrated his birthday for once with friends on the actual day. Last night before going to bed, Jack announced that he was now a "tween". Oh boy, here we go!
I really think 2011 is going to be a fantastic year, and I'm not just saying that because 11 is my lucky number. I think we'll finally gain back the seizure control we lost for Jenelle and my health should continue to improve as well. My only New Year's Resolution is to finish chemotherapy this year; and if all goes well, that will happen in August!
Thank you for continued thoughts and prayers. I'll post some photos soon!
Monday, December 13, 2010
New Plan for Jenelle's Increased Seizures
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!
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!
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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