I'm sure this analogy has been made before, but living with a child with Epilepsy is like living in Southern California and waiting for the next earthquake. Even the EEG monitor and Earthquake Seismograph make similar "wavy" motions when the event happens. As a California native, I've learned that you can't live your life being afraid for the next earthquake anymore than you can live in fear of the next seizure. Still, the feelings and anticipation are very similar for me. We had an earthquake last week that was centered somewhere off the coast near San Diego. I felt it from my 13th floor office in Newport Beach, and believe me is was a fun ride as we swayed back and forth and jiggled up and down. The earthquake itself was minor with no major damage, so it literally was fun… but it got me thinking about past earthquakes, and how scary they really can be. Is it going to be a mild 20 second seizures, or a 7 minute grand mal? Will we continue with what we were doing, or will our activity stop so we can call 911 and go to emergency? Like earthquakes, you just never know what to expect with a seizure.
This is just an update with the latest on the kids. I've been keeping some things out of email lately until issues were finally resolved, but our family has been on quite a roller coaster since the beginning of May. Upon our return from the hospital at UCLA for her testing in late April, we were asked to find a new daycare for Jack. I think he got to a crisis point where he really needed us to understand that he was afraid, and not getting enough attention. As I mentioned, he really didn't take our leaving for the hospital well, and cried hysterically like he'd never cried before. Later he was acting out by hitting and biting other kids. He was definitely trying to tell us something. Jack started a new daycare with less kids the following week. The change in daycare has been good for him and he is much more himself these days. You can't really blame it as Jack being spoiled or having unusual tantrums - he is going through more than most 3 year olds and handling it as well as can be expected. Overall, he's a great kid and is now having a good summer.
Shortly after Jack switched daycare, the Blind Children's Learning Center asked us to remove Jenelle from their "in center" program because they felt her seizures were "uncontrolled" and that she was "medically unstable" for in center therapy. We were devastated because we were not only forced to find new daycare on short notice, the act of removing her from therapy so abruptly because of her seizure status was a harsh reminder of the new "reality" we must face having a daughter with Epilepsy. Jenelle seizure status was really no different than it was before we went to UCLA, but upon hearing about her 7 minute grand mal and her new Diastat prescription, the school was concerned. We asked the Epilepsy Foundation and Regional Center to work with us and the school and eventually worked out the issues with a couple of meetings and an educational seminar on seizures provided by the Epilepsy Foundation. Jenelle started back to the "in center" Infant Development Program today and we are grateful that she is back to the wonderful therapy that was benefiting her so much. During this time, we kept Jenelle at home using our respite nursing and/or using various babysitters (Grandma and Aunt Nicki). Her therapy continued (PT and OT in the home) but it was not the same amount of hours as before and we definitely saw the difference, as did Dr. Shields. Regional Center really came through for us and now Jenelle will be getting 20 hours of in home nursing daycare, so we will have a nurse staying with her at home. At this time we decided to separate Jack & Jenelle in the daycare setting to make Jack's environment more stable, but now that Jenelle is back at school, and with their summer schedule, she will start in the afternoons at his daycare next week.
Some have told me that I probably shouldn't have told Jenelle's school so much about her seizures and her new diagnosis, but I feel I would rather have people know everything (even the scary stuff) for Jenelle's safety and benefit. It would not be in Jenelle's future interest if we did not advocate for Epilepsy and start educating the public now so they can understand her issues and accept them. I realize some parents feel they need to be private about their child's seizures, but I feel we are doing more for Jenelle by bringing them out in the open than if we were to keep them private. So as you can see, the past two months have been a real ride of ups and downs as we've been scrambling for daycare and managing to get through these difficulties day by day. We seem to have survived.
Jenelle is relatively stable at this time. She's been on the max dose of Topamax for a week or more now, and is fighting constipation and is still having daily mild seizures. She usually has a grand mal every two or three weeks, but all this is pretty "stable" for us… meaning at least we aren't in the hospital. She is really responding well vocally, and her vocabulary includes "ah boo", "ah pffft", and "uh oh". Jack has affectionately nick named her "Boo" and she is starting to acknowledge that name as well as her own. I'm trying to slip in "mum" these days and she seems to be hearing me. She is also holding up her head well, and lifting up her body while on her tummy. Its wonderful to see her do so well, though we did have a set back with the decrease in therapy.
Jack is your typical 3 1/2 year old, and makes us laugh every day. He has his first crush on "Dora the Explorer", and fell in love with a "Dora" electric toothbrush I purchased a few weeks ago. He literally told me, "Mommy, I LOVE her. I LOVE her Mommy!" While the toothbrush was an easy purchase, it was a little more difficult to explain why he couldn't have the "pink" Dora tennis shoes! Jack also has a new love for "pockets" and likes for us to give him coins to put in his "pockets". This has been an excellent tool for teaching him the names of coins, such as quarter, dime, nickel, etc. However, Brett was a little confused the other day when Jack ran to him saying, "Daddy, I want my money back!" We eventually learned that the money was "deposited" into Jack's tummy as Jack decided to swallow a quarter. I guess we'll be looking for the return on that deposit with "interest" in the next week or so. And finally, Jack had the clever idea to fool Mommy the other day into thinking he'd finished all of his dinner. I found his vegetables all hidden neatly under his upside down milk cup! Ah, this age is so fun. Jack really loves his "Baby Boo" and likes to help with her therapy. He is pretty much the only person that can get her to laugh and smile on command! Its wonderful to see!
So, that is our update for now. As I said, things are stable and moving along day by day. We're pretty sure that we'll be trying a new drug for Jenelle (Lamictal) at the end of the month since the Topamax hasn't stopped her seizures. Our next visit with Dr. Shields is in August.
Wednesday, June 23, 2004
Tuesday, June 08, 2004
I told everyone that we were seeing Dr. Shields today (Tuesday) when in actuality, our appointment was for the "7th" which was yesterday. I knew it was the 7th, I just thought the 7th was a Tuesday! LOL Don't worry, we didn't miss the appointment!
Brett and I took Jenelle to UCLA yesterday where we met with Dr. Shields and his resident Dr. Shariti to discuss the recent test results. There is not much new to report since we left UCLA in April - Jenelle is still not a surgical candidate. Her EEG was abnormal (obviously) with no focal point to her seizures, the MRI was "normal" and there were no changes from her MRI in July 2003 (which is really good news), and her PET scan found an abnormality regarding her glucose metabolism in the right frontal lobe, but the results were "too inconclusive" to warrant surgery. Basically, our little girl is one huge mystery! I'll discuss the PET results in detail a little later...
Dr. Shields feels that Jenelle is "transitioning" into Lennox Gastaut Syndrome (LGS), but as he says, "the writing is on the wall, but its not carved in stone yet!" When a child has Infantile Spasms that are symptomatic like Jenelle (i.e. the patient has an "underlying" neurological condition, and in Jenelle's case, her "underlying" condition is undiagnosed) they have a greater possibility of transitioning into LGS, which means their seizures will change their presentation. This is something we have seen in Jenelle. Basically, her seizures have changed from "spasm" like seizures to "myoclonic and tonic/clonic" seizures. This could be the LGS, or simply that her brain has grown, and thus her seizures have changed on us. For now, he is calling it LGS; her ultimate "prognosis" with that is yet to be seen and/or determined. Basically, we were told to expect to deal with her seizures for the rest of her life - and honestly, this wasn't a huge surprise.
Dr. Shields feels we have a "few" more drugs to try before attempting the Ketogenic Diet or a VNS implant. He feels that the Vigabatrin has helped control her Infantile Spasms, and wants to continue with this drug a little longer. He also wants to increase her Topomax a third time to the max dosage to give it a full trial before moving onto another drug called Lamictal. We are slowly increasing Topomax now and will give it another month on the max dose. The Klonopin will stay the same as we don't want to make too many changes at once. He was honest with us and said he felt the other drugs we have yet to try may only have a 10% to 15% chance of successfully stopping her seizures. We asked for more details about the LGS prognosis since we've seen such varying information, and he admitted it was quite grim in that most LGS patients are severely mentally retarded and usually wheelchair bound, but in his experience, very few die. In fact, in his 20+ years of experience, he said he has had 2,000 patients with LGS, and only 2 have died. That is a much better statistic than those we've previously seen. A "shorter" life is still a possibility, and we accept that possibility.
He was very concerned with Jenelle's therapy, and felt our main goal at this time was to provide as much therapy and stimulation as possible so that we can help Jenelle reach her full developmental potential. He felt strongly that in a year or two as her brain grows, we may determine a focal point in the brain to her seizures that can be corrected surgically. It is very important that she progress developmentally prior to any surgery as there is always a risk of losing skills after surgery. The more development, the better the outlook after surgery.
About the PET scan results. We had received a copy of Jenelle's medical records prior to our visit yesterday, so we already knew about the focal point in the Right Frontal Lobe. This was concerning because Jenelle consistently favors and uses her left side of her body better than her right side. We assumed the problem was in the left side of her brain. Usually with a problem in the right side of her brain, it would be more likely that she would have problems using the left side of her body - not that it would be her "best" side. I asked Dr. Shields about this result, and he agreed it was very strange. Because the PET scan results and her physical presentation are confusing and/or conflicting, this is a reason not to support surgery at this time. It is quite possible that if the brain damage is to her right frontal lobe, it happened immediately during her development, and her brain has since taught itself to compensate and make different connections in order for her to use her left side so well. Frankly, they cannot explain the results, but it is something we can watch in the coming years as her brain grows. We are scheduled to see Dr. Shields again in August.
The goal at this point is to help Jenelle progress in her development as much as possible. We realize that seizures are just going to have to be a part of our lives - as much as we may hate them. We hope to find a medication that will provide some amount of seizure control that will help provide Jenelle the most development at this time. I'll continue to update when I have something new - thank you all for your continued prayers and support!
Brett and I took Jenelle to UCLA yesterday where we met with Dr. Shields and his resident Dr. Shariti to discuss the recent test results. There is not much new to report since we left UCLA in April - Jenelle is still not a surgical candidate. Her EEG was abnormal (obviously) with no focal point to her seizures, the MRI was "normal" and there were no changes from her MRI in July 2003 (which is really good news), and her PET scan found an abnormality regarding her glucose metabolism in the right frontal lobe, but the results were "too inconclusive" to warrant surgery. Basically, our little girl is one huge mystery! I'll discuss the PET results in detail a little later...
Dr. Shields feels that Jenelle is "transitioning" into Lennox Gastaut Syndrome (LGS), but as he says, "the writing is on the wall, but its not carved in stone yet!" When a child has Infantile Spasms that are symptomatic like Jenelle (i.e. the patient has an "underlying" neurological condition, and in Jenelle's case, her "underlying" condition is undiagnosed) they have a greater possibility of transitioning into LGS, which means their seizures will change their presentation. This is something we have seen in Jenelle. Basically, her seizures have changed from "spasm" like seizures to "myoclonic and tonic/clonic" seizures. This could be the LGS, or simply that her brain has grown, and thus her seizures have changed on us. For now, he is calling it LGS; her ultimate "prognosis" with that is yet to be seen and/or determined. Basically, we were told to expect to deal with her seizures for the rest of her life - and honestly, this wasn't a huge surprise.
Dr. Shields feels we have a "few" more drugs to try before attempting the Ketogenic Diet or a VNS implant. He feels that the Vigabatrin has helped control her Infantile Spasms, and wants to continue with this drug a little longer. He also wants to increase her Topomax a third time to the max dosage to give it a full trial before moving onto another drug called Lamictal. We are slowly increasing Topomax now and will give it another month on the max dose. The Klonopin will stay the same as we don't want to make too many changes at once. He was honest with us and said he felt the other drugs we have yet to try may only have a 10% to 15% chance of successfully stopping her seizures. We asked for more details about the LGS prognosis since we've seen such varying information, and he admitted it was quite grim in that most LGS patients are severely mentally retarded and usually wheelchair bound, but in his experience, very few die. In fact, in his 20+ years of experience, he said he has had 2,000 patients with LGS, and only 2 have died. That is a much better statistic than those we've previously seen. A "shorter" life is still a possibility, and we accept that possibility.
He was very concerned with Jenelle's therapy, and felt our main goal at this time was to provide as much therapy and stimulation as possible so that we can help Jenelle reach her full developmental potential. He felt strongly that in a year or two as her brain grows, we may determine a focal point in the brain to her seizures that can be corrected surgically. It is very important that she progress developmentally prior to any surgery as there is always a risk of losing skills after surgery. The more development, the better the outlook after surgery.
About the PET scan results. We had received a copy of Jenelle's medical records prior to our visit yesterday, so we already knew about the focal point in the Right Frontal Lobe. This was concerning because Jenelle consistently favors and uses her left side of her body better than her right side. We assumed the problem was in the left side of her brain. Usually with a problem in the right side of her brain, it would be more likely that she would have problems using the left side of her body - not that it would be her "best" side. I asked Dr. Shields about this result, and he agreed it was very strange. Because the PET scan results and her physical presentation are confusing and/or conflicting, this is a reason not to support surgery at this time. It is quite possible that if the brain damage is to her right frontal lobe, it happened immediately during her development, and her brain has since taught itself to compensate and make different connections in order for her to use her left side so well. Frankly, they cannot explain the results, but it is something we can watch in the coming years as her brain grows. We are scheduled to see Dr. Shields again in August.
The goal at this point is to help Jenelle progress in her development as much as possible. We realize that seizures are just going to have to be a part of our lives - as much as we may hate them. We hope to find a medication that will provide some amount of seizure control that will help provide Jenelle the most development at this time. I'll continue to update when I have something new - thank you all for your continued prayers and support!
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