I fall for this every time. During Brandon's hospital stay we decided to take another round looking at Brandon's genetic profile to determine any possible diagnosis. I was thinking that I am close to giving up on a diagnosis. In a way it really does not matter, except if his condition is worsening. Right now Brandon is doing great. But in the hospital I wasn't sure, soooo I fell for it again and set myself up for another possible diagnosis or issue. Sure enough, Brandon's doctor called today and they have found a genetic deletion. One they have not found before. And one so rare they don't know that it means.
For those of you looking for a diagnosis, I have spent the last 3 years of Brandon's life reviewing genetic information, having more tests performed on Brandon each year as the genetic industry has evolved and finding more possible rare conditions maybe associated with Brandon. I will add this one to the list. But it never changes that when I get a new diagnosis or discovery of a new possible condition, I start all over with the loss of dreams for Brandon, anger, depression, searching for what it means and then acceptance. It is very exhausting. And today I took another path down this bumpy road. So I have to whine a little for now. After I have read every website I can and talked to everyone I know, I will accept and move on. But after 19 years the process never seems to change.
I think margaritas are in order this evening.
More later
Leah
Friday, June 22, 2012
Monday, June 18, 2012
A little update. The last week in May Brandon and I spent Tuesday through Thursday at Dell Children's Hospital Epilepsy Monitoring Unit. We went back early Friday for Brandon's clinical trial visit. So perfect timing. It was Brandon's last week at school and a short week for me.
I on the other hand, have just now recovered. I just cant spend 1 weekend prior to a hospital admission with a sick kid (Brandon), then go inpatient with Brandon for three days and have little sleep. It really took all my energy. I remember plenty of 3 week hospital stays with Brandon when he was young with little or no sleep and I seemed to recover much quicker in my 30's. Now I am in my 50's and the recovery time is much longer. But it was worth it. Having Brandon on only one medicine for his seizures is great. Having him seizure free is even better.
Getting to the place I am today of understanding the results of this hospital visit was a little challenging. So, I have to regress here a little. One of my pet peeves with doctors is their attempt to give you results when you are not 100%. Over the years I have tried all kinds of tricks to help with this. I have brought friends with us to listen to the same thing I am listening to. I have brought a tape recorder. I have brought a video camera. Some doctors don't like to have the conversation recorded or they are very careful about what they say when you record. I have had some of doctors say they don't want to be recorded. So, Dr Clark choose the last day to discuss the results of the MRI and the EEG. But I was like a patient who had just come out of anesthesia and the physician wants to talk about the procedure he/she just performed. I was pretty out of it.
On Friday after the hospital stay we came back to the hospital for a clinic trial visit and I asked for copies of all the tests, read over the reports, googled over the weekend and decided its all good news. The doctor still wants Brandon to come back for a sleep study because he may have some apnea events at night, but all in all his EEG looks better than any of the EEG's of over 19 years. The other important thing I try to do over the years, is to keep all important medical documents concerning Brandon myself. I have books of records from 19 years. But I have three binders of important records. These new records will go into the three binders for the future. And maybe sometime in the near future I will have all of these as an electronic medical record.
Transition news - Brandon and I have moved back into the Dripping Springs house. We are going back and forth to the condo to clear out enough of my stuff to allow someone to stay with Brandon next year as he transitions to a more independently living arrangement. Part of the success for living more independent is getting Brandon's seizures under control. So with his seizures more under control, this will only make transition easier for everyone.
Brandon is at VSA Arts Camp for June and loving making movies and music.
More transition news to come.
Later
Leah
 |
| Brandon with therapy dog |
Brandon started out the memorial day weekend with a cold. I knew it could get worse quick and I didn't want to reschedule the whole week, so thanks to all you mom's for all those cold cures. I don't know which one did it, but it knocked out Brandon's fever and cold by late Monday (memorial day). Brandon and I got up at 4:45 am and left for the hospital after the medicine routine around 6:00 am. Brandon checked in for an MRI under general anesthesia. After the MRI the Epilepsy Unit prepared Brandon for the EEG by placing the nodes on his head. He went in for the MRI at 7:00 am but the hospital staff didn't call me back until 10:30 am. We then headed to the hospital room, our home for the next three days. The good news. Brandon had no clearly defined seizures, but he had activity indicating he is a strong candidate for seizure activity. The good news about that, is that Brandon's seizures are now fairly well controlled just on Keppra. The physicians removed Brandon from all medications except Keppra the first day, then off all medicines. We decided that Brandon's activity was well controlled with just one drug (Keppra) and the decision was made to remove Brandon from the other two seizure drugs. Really the only way to take this kind of risk with seizures is in the the hospital. Brandon has now been seizure free since his release and he is a different kid. Much more awake and engaged.
Getting to the place I am today of understanding the results of this hospital visit was a little challenging. So, I have to regress here a little. One of my pet peeves with doctors is their attempt to give you results when you are not 100%. Over the years I have tried all kinds of tricks to help with this. I have brought friends with us to listen to the same thing I am listening to. I have brought a tape recorder. I have brought a video camera. Some doctors don't like to have the conversation recorded or they are very careful about what they say when you record. I have had some of doctors say they don't want to be recorded. So, Dr Clark choose the last day to discuss the results of the MRI and the EEG. But I was like a patient who had just come out of anesthesia and the physician wants to talk about the procedure he/she just performed. I was pretty out of it.
On Friday after the hospital stay we came back to the hospital for a clinic trial visit and I asked for copies of all the tests, read over the reports, googled over the weekend and decided its all good news. The doctor still wants Brandon to come back for a sleep study because he may have some apnea events at night, but all in all his EEG looks better than any of the EEG's of over 19 years. The other important thing I try to do over the years, is to keep all important medical documents concerning Brandon myself. I have books of records from 19 years. But I have three binders of important records. These new records will go into the three binders for the future. And maybe sometime in the near future I will have all of these as an electronic medical record.
Transition news - Brandon and I have moved back into the Dripping Springs house. We are going back and forth to the condo to clear out enough of my stuff to allow someone to stay with Brandon next year as he transitions to a more independently living arrangement. Part of the success for living more independent is getting Brandon's seizures under control. So with his seizures more under control, this will only make transition easier for everyone.
Brandon is at VSA Arts Camp for June and loving making movies and music.
More transition news to come.
Later
Leah
Sunday, May 13, 2012
Happy Mother's Day. Today was a nice mother's day. I went with my brother, my mom and Brandon to lunch and then came back to Dripping Springs and worked in the garden. My friends Bill and Kim came out to stay for the weekend. Really a lovely weekend.
I found a fabulous mentor and companion to live with Brandon next year. Brandon, me and his network have worked for several weeks trying to find that right match. Thanks to such great connections Brandon's network has in the community, we were able to find someone with experience transitioning youth into their adult years and adult services. This has been a big relief for me because I really wasn't sure I could find that right match. This week I really came to terms that I am really looking for someone to help take Brandon to that next step in his life. Someone better at those skills than me. I have to admit I am really happy, but in another way I am also sad. I have worked so hard to get Brandon to this place it is hard to imagine life not centering around Brandon in the future. Instead I will watch Brandon from the sidelines and supporting his blossoming in the future.
So if you ask me how my mother's day went, I will tell you it was really lovely and I am happy. I may have a little sniffle when I say it, but it is a sniffle of joy for Brandon's future.
Happy Mother's Day everyone.
Leah
AND
I found a fabulous mentor and companion to live with Brandon next year. Brandon, me and his network have worked for several weeks trying to find that right match. Thanks to such great connections Brandon's network has in the community, we were able to find someone with experience transitioning youth into their adult years and adult services. This has been a big relief for me because I really wasn't sure I could find that right match. This week I really came to terms that I am really looking for someone to help take Brandon to that next step in his life. Someone better at those skills than me. I have to admit I am really happy, but in another way I am also sad. I have worked so hard to get Brandon to this place it is hard to imagine life not centering around Brandon in the future. Instead I will watch Brandon from the sidelines and supporting his blossoming in the future.
So if you ask me how my mother's day went, I will tell you it was really lovely and I am happy. I may have a little sniffle when I say it, but it is a sniffle of joy for Brandon's future.
Happy Mother's Day everyone.
Leah
Tuesday, May 1, 2012
Today I took the scary step a parent of a child with special needs dreads. Letting go. Today I posted an ad for a live-in companion for my son Brandon. It really is a leap of faith, but I do have faith that Brandon, me and his network will find that right companion to live with him next school year. We all have worked through developing a creative way to start Brandon's next step in transition. The step is to live separately from his mom. Brandon will turn 20 next year and is very much a young man ready for independence. But he still needs supervised care. I don't have any other living options available for Brandon right now expect to creatively develop our own. I realized that this condo where we currently live is the perfect setup for this transition and that I would be missing an opportunity to help Brandon with his next step to his good life if I didn't utilize an unique arrangement.
Brandon will go to school Monday through Friday and stay at the condo during that time. On the weekends he will stay with me in at our house. During the school week he will have his current aide Ross pick him up from school, take him to any planned activities or take him home and do the daily living activities until 7:00 pm. Companion care will begin during the awake hours after Ross leaves and the morning awake hours until Brandon gets on the bus for school. That frees the companion to go to work or go to school during the day. Each night the companion will stay for free in the condo in exchange for watching after Brandon during the sleep hours. The sleep hours require no care to little care. I know it sounds easy, but the whole thing is a little complicated with a contract for services with the companion, mixing of CLASS waiver funds, SSI funds and private funding, keeping a running car available for the aides and preparing for emergencies. In addition, I have started Brandon with electronic reminders and a monitoring system in the hours already. Brandon responds well to the reminders but those will both need to be developed further. I am also looking at other electronic methods to make the transition smoother for everyone. If you are a parent searching for more information on these type of electronic supports, I highly recommend this site. http://login.npwebsiteservices.com/leap/IILP.asp. I cant stop looking over the information for ideas for this condo to help Brandon be as independent as possible. What a great group of parents.
So this is all very scary for me, but just like any parent - I know it is the right choice for Brandon.
More news - Brandon won a silver medal this weekend in special Olympics for his track meet. He dedicated his win to the memory of Dick Clark. He was a little irritated with the announcer handing out the medals that he could not understand his memorial. But we all knew what he was trying to say. I pulled Brandon from his softball throw. He had a 2 hour wait in the heat and I didn't want to chance any additional seizures.
About those seizures - Good news. Brandon has been excepted in the Epilepsy Clinic at Dell Children's Hospital for a 3 to 5 day stay to review Brandon's seizure activity, his seizure disorder and determine the appropriate treatment. Because of this, Brandon will end his school year 1 week early. I am very relieved to have a thorough review and recommendation. This will only help his next step to independence be that much easier.
So on to finding that special companion for Brandon. Wish us luck.
More later.
Leah
Brandon will go to school Monday through Friday and stay at the condo during that time. On the weekends he will stay with me in at our house. During the school week he will have his current aide Ross pick him up from school, take him to any planned activities or take him home and do the daily living activities until 7:00 pm. Companion care will begin during the awake hours after Ross leaves and the morning awake hours until Brandon gets on the bus for school. That frees the companion to go to work or go to school during the day. Each night the companion will stay for free in the condo in exchange for watching after Brandon during the sleep hours. The sleep hours require no care to little care. I know it sounds easy, but the whole thing is a little complicated with a contract for services with the companion, mixing of CLASS waiver funds, SSI funds and private funding, keeping a running car available for the aides and preparing for emergencies. In addition, I have started Brandon with electronic reminders and a monitoring system in the hours already. Brandon responds well to the reminders but those will both need to be developed further. I am also looking at other electronic methods to make the transition smoother for everyone. If you are a parent searching for more information on these type of electronic supports, I highly recommend this site. http://login.npwebsiteservices.com/leap/IILP.asp. I cant stop looking over the information for ideas for this condo to help Brandon be as independent as possible. What a great group of parents.
So this is all very scary for me, but just like any parent - I know it is the right choice for Brandon.
More news - Brandon won a silver medal this weekend in special Olympics for his track meet. He dedicated his win to the memory of Dick Clark. He was a little irritated with the announcer handing out the medals that he could not understand his memorial. But we all knew what he was trying to say. I pulled Brandon from his softball throw. He had a 2 hour wait in the heat and I didn't want to chance any additional seizures.
About those seizures - Good news. Brandon has been excepted in the Epilepsy Clinic at Dell Children's Hospital for a 3 to 5 day stay to review Brandon's seizure activity, his seizure disorder and determine the appropriate treatment. Because of this, Brandon will end his school year 1 week early. I am very relieved to have a thorough review and recommendation. This will only help his next step to independence be that much easier.
So on to finding that special companion for Brandon. Wish us luck.
More later.
Leah
Monday, April 16, 2012
Brandon at the Beach in Port Aransas
Brandon in the water at Port Aransas
Brandon in a wave
Brandon taking this all in.
BRANDON LOVES THE BEACH
Friday, April 13, 2012
The Old Brandon is Gone
Last weekend Brandon and I drove to Port Aransas for a 4 day weekend. We met several people at the coast, stayed right on the beach and had a great restful weekend. Driving down to Port Aransas, Brandon immediately started listening to the Beatles. I immediately started thinking about 4 hours of Beatles driving down to the coast. Don't get me wrong. I love the Beatles. But I have listened to the Beatles non-stop for years. So, I said to the Brandon - "Brandon I want to carve-out an hour for Mommy to listen to the music she loves on the way to the coast". Brandon started shaking his head "NO". This went on for a few minutes and I said - "what ever happened to that sweet Brandon who would do anything his Mommy asked him to do"? Brandon said - "THE OLD BRANDON IS GONE"!!! Welcome to being a full blown teenager. But also - welcome to the new, interactive, lively, Brandon. After 17 years on the seizure medication "tegretol" Brandon is finally off the medicine. AND everyone has noticed that Brandon is awake, interactive, funny, talkative and healthy. It has taken 1 month to wean Brandon off the drug and increase other seizure medications to replace tegretol.
Brandon has really had uncontrolled seizures since being released from the hospital after recovering from H1N1 two1/2 years ago. The dosage of the tegretol medication was very high for the last year and when Brandon was admitted to the hospital last month the level was toxic. Tegretol is also an old medication and has many side effects. Many parents I talk to about this drug all describe their kid on tegretol as in a fog. But what I guess I didn't understand was how much in the fog Brandon was on this drug and how much it has impacted his health the last 2 1/2 years. Even Brandon's lungs are much better. He is not sleeping more than most teenagers and his seizure activity is 90% better.
So when Brandon said the the old Brandon is gone, I had to start laughing because he really is a new Brandon. And I like the new Brandon. Just FYI - he recanted a few minutes later and said he is still the sweet Brandon. But the old Brandon would have slept at least two hours of the ride and the new Brandon told stories (about the Beatles) the entire time.
A little more Brandon news. Brandon and his network of friends (including me) are in the process of looking for the perfect person to co-parent with Brandon next school year. As we move to the next phase of transition, I have realized that our current living situation is the perfect opportunity to prepare Brandon for living independently. Brandon and his network have developed a plan for Brandon's future and part of that plan is for Brandon to live independently with a roommate. So after Brandon completes this school year, we will move back to Dripping Springs temporarily. Then in August, Brandon will move back into the condo with a co-parent/roommate for the next school year. Brandon will come to Dripping Springs each weekend, holidays, etc.... but otherwise he will be in school or here at the condo working on being as independent as possible. The network is looking for that right person to be a good co-parent and move in at the condo. Let us know if you know of anyone you could recommend us to consider.
A little about me - I have lost 17 pounds, gained back about 5 and on the road to losing 20 more. It has been hard, but all I have is time and motivation. I am going to spend the rest of April focused on the next 10. I am not traveling the rest of the month and trying to be as active as possible. Thanks for those of you who have sent your encouragement.
On to the new Brandon and 10 more less pounds.
More later
Leah
Brandon has really had uncontrolled seizures since being released from the hospital after recovering from H1N1 two1/2 years ago. The dosage of the tegretol medication was very high for the last year and when Brandon was admitted to the hospital last month the level was toxic. Tegretol is also an old medication and has many side effects. Many parents I talk to about this drug all describe their kid on tegretol as in a fog. But what I guess I didn't understand was how much in the fog Brandon was on this drug and how much it has impacted his health the last 2 1/2 years. Even Brandon's lungs are much better. He is not sleeping more than most teenagers and his seizure activity is 90% better.
So when Brandon said the the old Brandon is gone, I had to start laughing because he really is a new Brandon. And I like the new Brandon. Just FYI - he recanted a few minutes later and said he is still the sweet Brandon. But the old Brandon would have slept at least two hours of the ride and the new Brandon told stories (about the Beatles) the entire time.
A little more Brandon news. Brandon and his network of friends (including me) are in the process of looking for the perfect person to co-parent with Brandon next school year. As we move to the next phase of transition, I have realized that our current living situation is the perfect opportunity to prepare Brandon for living independently. Brandon and his network have developed a plan for Brandon's future and part of that plan is for Brandon to live independently with a roommate. So after Brandon completes this school year, we will move back to Dripping Springs temporarily. Then in August, Brandon will move back into the condo with a co-parent/roommate for the next school year. Brandon will come to Dripping Springs each weekend, holidays, etc.... but otherwise he will be in school or here at the condo working on being as independent as possible. The network is looking for that right person to be a good co-parent and move in at the condo. Let us know if you know of anyone you could recommend us to consider.
A little about me - I have lost 17 pounds, gained back about 5 and on the road to losing 20 more. It has been hard, but all I have is time and motivation. I am going to spend the rest of April focused on the next 10. I am not traveling the rest of the month and trying to be as active as possible. Thanks for those of you who have sent your encouragement.
On to the new Brandon and 10 more less pounds.
More later
Leah
Wednesday, March 14, 2012
A Healthy Me and You
I haven't posted in a while. I have been traveling for work and Brandon and I have alternated colds and the stomach bug for the last two months. I have also had a few "respite weekends" tied to some of my travel. So a little update.
A little me - Well I feel like I have some success on my new healthy living. I have lost 17 pounds and am finally back in my wardrobe. But I feel like I need to get to a healthy weight for me and for my diabetes so I am aiming for another 20 pounds. I am walking everyday that I am in Austin on the trails for about 3 miles a walk. Really feeling great and holding off the high blood pressure for now. Its all good. Just need to stay focused on healthy eating and regular exercise.
A bunch you (Brandon) - As you may have read in the last two years, Brandon has had a rough time with seizure control. There are many factors on why his seizures have been worse in the last 2 years. Loss of significant weight after being hospitalized for H1N1 and having his medication levels off, insult to Brandon's system from the stress of H1N1, puberty kicking in, being on the same medication for 15 years and wisdom teeth coming in. But no one really knows why Brandon's seizures have been uncontrolled.
I have many friends of kids who have seizures experiencing the same thing at this age. As I was reminded this week, it has been a miracle that Brandon had his seizures under control for 17 years. But it finally came to a head this weekend when Brandon really could not wake up after 48 hours. He was just being controlled by the seizures.
Brandon has been on tegretol medication for 15 years. When Brandon started on the medication at age 2, Brandon really had his seizures under control. The only time they were not under control, was if he became sick or if he had a growth spurt. When he did have seizures they were very hard to detect. But it all changed after Brandon had H1N1. He began having fairly significant seizures shortly after discharge. We began raising the tegretol level month after month until finally we reached the top of the recommended therapeutic level. The neurologist then started him on Keppra on top of the high tegretol dose. Within a few days of starting Keppra, Brandon was like a new kid. We was interactive, talkative, happy, joking and engaged. I didn't realize what a toll tegretol was taking on him. It really has some serious side effects. I have wanted to remove tegretol since we added Keppra. There is currently a clinical trial studying the effects of Keppra on kids. Many parents have reported that their kids have "awakened" on Keppra and it is being studied. So needless to say, I love Keppra. But it has never completely stopped Brandon's seizures. Plus, Brandon is still on a very high does of tegretol while trying to get Brandon seizure free on Keppra. The only way to fast track change of his medications is to be in he hospital while being monitored.
Other things that have changed since H1N1 - Brandon now has triggers for seizures. He never had them before. For him, lack of sleep, bright lights, strong laughing and stress can set off a seizure. Brandon has been very careful to try and avoid the list. Brandon's seizures have become much more controlled since on Keppra, but he still has them. When he has them, they can be very strong and result in Brandon sleeping for hours afterwards. This weekend Brandon said he had a bad seizure Saturday night. I had a hard time waking him up Sunday morning. He finally got up for a few minutes but went right back to bed. He had another seizure Sunday morning. He finally woke up around 2 pm Sunday. We went to a store and Brandon had a bad seizure in the store. We left and came home. Brandon went to sleep. He woke up screaming in the middle of the night Sunday night (after a seizure) and then slept with me. Brandon had little seizures through the night and then had another one in the morning (Monday). He was still asleep when I left for a meeting. While I was gone Ross said he screamed again (another seizure). When I got back around 1:30 he was still asleep, could not walk without help and hard to wake up. I had been talking to the neurologist through the weekend and Monday morning and we all agreed he needed to go to the hospital to get checked. Brandon did not wake up until he had a dose of Depokene in the ER. At 6:00 PM he opened his eyes and was awake and talking. Dell ER ran a ton if tests and all tests led to Brandon just have seizures without any illness. Although Brandon was awake, the neurologists wanted him admitted to monitor his activity on the new medication and discuss the plan to keep him healthy.
The Plan - Begin weaning Brandon off tegretol with the goal of him totally off in 4 weeks. Begin Depokene, but increasing as we decrease tegretol (apparently they don't work well together). The end result is a therapeutic level in 4 weeks. Keep Brandon on a slightly higher level of Keppra. After Brandon's blood levels are checked in 4 weeks, set Brandon up for a 3 day stay in the Comprehensive Epilepsy Program at Dell.
http://www.dellchildrens.net/about_us/news/2011/08/02/setons_epilepsy_programs_for_children_and_adults_are_tops_in_the_region
Brandon will stay for three days in the Comprehensive Epilepsy Program while they take him off all medications. They will have him on an EEG for three days to determine the source of the seizures and decide what the best treatment is for his condition. I am hoping that after all this, Brandon will be back to rarely having a seizure and having his seizure activity under control.
For Brandon's future, having more control of his seizures will help him with employment. In addition, we are looking at having someone live with Brandon next year. So the more stable his condition the better. It is essential.
Last night Brandon was seizure free, happy, strong and looking better than I have seen him in a while. So so far so good.
Thanks to all you mom's the last two days pointing me to the Comprehensive Epilepsy Program. Once again, Parent to Parent connections work. And thanks Ross and Kate for taking care of the house, running errands and going to get Ringo (who I forgot about when we left). Thanks to Tom and Tony for company and some great food while we were waiting.
On to being healthy.
Leah
A little me - Well I feel like I have some success on my new healthy living. I have lost 17 pounds and am finally back in my wardrobe. But I feel like I need to get to a healthy weight for me and for my diabetes so I am aiming for another 20 pounds. I am walking everyday that I am in Austin on the trails for about 3 miles a walk. Really feeling great and holding off the high blood pressure for now. Its all good. Just need to stay focused on healthy eating and regular exercise.
A bunch you (Brandon) - As you may have read in the last two years, Brandon has had a rough time with seizure control. There are many factors on why his seizures have been worse in the last 2 years. Loss of significant weight after being hospitalized for H1N1 and having his medication levels off, insult to Brandon's system from the stress of H1N1, puberty kicking in, being on the same medication for 15 years and wisdom teeth coming in. But no one really knows why Brandon's seizures have been uncontrolled.
I have many friends of kids who have seizures experiencing the same thing at this age. As I was reminded this week, it has been a miracle that Brandon had his seizures under control for 17 years. But it finally came to a head this weekend when Brandon really could not wake up after 48 hours. He was just being controlled by the seizures.
Brandon has been on tegretol medication for 15 years. When Brandon started on the medication at age 2, Brandon really had his seizures under control. The only time they were not under control, was if he became sick or if he had a growth spurt. When he did have seizures they were very hard to detect. But it all changed after Brandon had H1N1. He began having fairly significant seizures shortly after discharge. We began raising the tegretol level month after month until finally we reached the top of the recommended therapeutic level. The neurologist then started him on Keppra on top of the high tegretol dose. Within a few days of starting Keppra, Brandon was like a new kid. We was interactive, talkative, happy, joking and engaged. I didn't realize what a toll tegretol was taking on him. It really has some serious side effects. I have wanted to remove tegretol since we added Keppra. There is currently a clinical trial studying the effects of Keppra on kids. Many parents have reported that their kids have "awakened" on Keppra and it is being studied. So needless to say, I love Keppra. But it has never completely stopped Brandon's seizures. Plus, Brandon is still on a very high does of tegretol while trying to get Brandon seizure free on Keppra. The only way to fast track change of his medications is to be in he hospital while being monitored.
Other things that have changed since H1N1 - Brandon now has triggers for seizures. He never had them before. For him, lack of sleep, bright lights, strong laughing and stress can set off a seizure. Brandon has been very careful to try and avoid the list. Brandon's seizures have become much more controlled since on Keppra, but he still has them. When he has them, they can be very strong and result in Brandon sleeping for hours afterwards. This weekend Brandon said he had a bad seizure Saturday night. I had a hard time waking him up Sunday morning. He finally got up for a few minutes but went right back to bed. He had another seizure Sunday morning. He finally woke up around 2 pm Sunday. We went to a store and Brandon had a bad seizure in the store. We left and came home. Brandon went to sleep. He woke up screaming in the middle of the night Sunday night (after a seizure) and then slept with me. Brandon had little seizures through the night and then had another one in the morning (Monday). He was still asleep when I left for a meeting. While I was gone Ross said he screamed again (another seizure). When I got back around 1:30 he was still asleep, could not walk without help and hard to wake up. I had been talking to the neurologist through the weekend and Monday morning and we all agreed he needed to go to the hospital to get checked. Brandon did not wake up until he had a dose of Depokene in the ER. At 6:00 PM he opened his eyes and was awake and talking. Dell ER ran a ton if tests and all tests led to Brandon just have seizures without any illness. Although Brandon was awake, the neurologists wanted him admitted to monitor his activity on the new medication and discuss the plan to keep him healthy.
The Plan - Begin weaning Brandon off tegretol with the goal of him totally off in 4 weeks. Begin Depokene, but increasing as we decrease tegretol (apparently they don't work well together). The end result is a therapeutic level in 4 weeks. Keep Brandon on a slightly higher level of Keppra. After Brandon's blood levels are checked in 4 weeks, set Brandon up for a 3 day stay in the Comprehensive Epilepsy Program at Dell.
http://www.dellchildrens.net/about_us/news/2011/08/02/setons_epilepsy_programs_for_children_and_adults_are_tops_in_the_region
Brandon will stay for three days in the Comprehensive Epilepsy Program while they take him off all medications. They will have him on an EEG for three days to determine the source of the seizures and decide what the best treatment is for his condition. I am hoping that after all this, Brandon will be back to rarely having a seizure and having his seizure activity under control.
For Brandon's future, having more control of his seizures will help him with employment. In addition, we are looking at having someone live with Brandon next year. So the more stable his condition the better. It is essential.
Last night Brandon was seizure free, happy, strong and looking better than I have seen him in a while. So so far so good.
Thanks to all you mom's the last two days pointing me to the Comprehensive Epilepsy Program. Once again, Parent to Parent connections work. And thanks Ross and Kate for taking care of the house, running errands and going to get Ringo (who I forgot about when we left). Thanks to Tom and Tony for company and some great food while we were waiting.
On to being healthy.
Leah
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