WE CAUGHT ONE....WE CAUGHT ONE!!!!! Not a fish, but a seizure. Can I hear an AMEN??? I thought sure she wasn't going to have any seizures. We got hooked up to the ambulatory EEG at 8 am yesterday. I got her back to school as quickly as I could (an hour and a half drive) as school seems to be her main stressor. Absolutely nothing happened yesterday. She had at least one seizure every day last week at school. The teachers couldn't believe it. She came home in a great mood (which normally I would wholeheartedly embrace), no seizures. All I could think is, maybe she is done for a little while. Naturally, as soon as she is hooked up....seems to be the story of our lives.
She went to sleep fairly well, talked A LOT in her sleep, but no seizures... UGH!! She got off to school this morning, even rode the bus with the whole EEG get up (Hannah is very self conscious. She doesn't like to look "different." We had bought new clothes with hoods, a new very snazzy hat and even a cool bag to put the monitor in). I waited all morning for the school to call. Praying. Please don't let this be in vain. We need information. Finally...THE call!! Blitzen had alerted at 11 am in math class. Good boy!! Another call at 11:30. Blitzen alerted again in the lunch room (never alerted there before). Another atta boy!! There were no visible changes in Hannah yet. Then at 11:45 the seizure began. Glazed over, drooling, baby talk, and getting very agitated. I came at 12:30 to pick her up so we could head back down to Cincinnati to unhook the leads. She was still pretty out of it. Miss, "I don't want anyone to see me like this", completely had her electrode ridden head exposed. She didn't care. I am not even sure she knew it. wow. She went all the way to Cincinnati and all through the hospital like that..
Before they unhooked her, they checked the data, It was there. In all its glory. Praise the Lord. Once they knew it recorded properly, they unhooked her, very itchy head.
So, now we wait....probably a week or so. If this shows them coming from one area, doors could be re- opened. But, I am trying not to get too hopeful....
And no word on VNS yet.... the saga continues....
Tuesday, September 29, 2009
Monday, September 28, 2009
mixed bag....
Yesterday was a bittersweet day. Daddy left to go back to Iraq, but Hannah was seizure free!! The first day in a nine days. No alerts, no rescue meds, no crazy behavior!! That was really sooo nice. Of course, this on the eve of an ambulatory EEG. So, I am thinking, is this the end of the valley we have been in or are we just taking a one day break???
We got up bright and early today (okay, not so bright out, quite still dark actually). I got the boys to the sitter and Hannah and I were on the road by 6:15. An amazing feat in itself....Hannah did FANTASTIC getting hooked up. It is really kind of sad. She has done it so many times that the smell and the whole drama of it, doesn't even bother her anymore. I think she was just happy , and even said, "at least I don't have to stay 10 days or have an IV"!!! What a trooper. We had one of our favorite techs help hook her up. She takes good care of my girl. So, hoodie and hat in place (went shopping at Justice for new apparel) we were off.
We got to school and she a little apprehensive, but went in like the champ she is. I was sooooo proud. I gave the teachers a couple instructions about the diary and button to push and I was off. Hoping for the call today....the call I got every day last week.... No alert. No seizure....No strange behavior....
WHY....WHY...WHY... when we get hooked up to record these stupid things, nothing happens???? ARGH! I must admit that I have rekindled that tiny glimmer of hope that maybe they could pinpoint an area where these are coming from. Still hoping for that cure. Resection....
We don't go back to unhook until 2 pm tomorrow. There is still hope....
Meanwhile...I have been on the phone to anyone I can think of about this second denial. The case manager got the rep to talk with Dr. Neuro today. He is arranging to have a "peer to peer conference" with some director of appeals at TRI CARE. He will plead Hannah's case to them. Dr. Neuro's nurse had a very good point today....She said it probably isn't even a neurologist. For all we know, it's a gynocologist who doesn't even know what a VNS is!!!
So we will keep on keeping on....
We got up bright and early today (okay, not so bright out, quite still dark actually). I got the boys to the sitter and Hannah and I were on the road by 6:15. An amazing feat in itself....Hannah did FANTASTIC getting hooked up. It is really kind of sad. She has done it so many times that the smell and the whole drama of it, doesn't even bother her anymore. I think she was just happy , and even said, "at least I don't have to stay 10 days or have an IV"!!! What a trooper. We had one of our favorite techs help hook her up. She takes good care of my girl. So, hoodie and hat in place (went shopping at Justice for new apparel) we were off.
We got to school and she a little apprehensive, but went in like the champ she is. I was sooooo proud. I gave the teachers a couple instructions about the diary and button to push and I was off. Hoping for the call today....the call I got every day last week.... No alert. No seizure....No strange behavior....
WHY....WHY...WHY... when we get hooked up to record these stupid things, nothing happens???? ARGH! I must admit that I have rekindled that tiny glimmer of hope that maybe they could pinpoint an area where these are coming from. Still hoping for that cure. Resection....
We don't go back to unhook until 2 pm tomorrow. There is still hope....
Meanwhile...I have been on the phone to anyone I can think of about this second denial. The case manager got the rep to talk with Dr. Neuro today. He is arranging to have a "peer to peer conference" with some director of appeals at TRI CARE. He will plead Hannah's case to them. Dr. Neuro's nurse had a very good point today....She said it probably isn't even a neurologist. For all we know, it's a gynocologist who doesn't even know what a VNS is!!!
So we will keep on keeping on....
Saturday, September 26, 2009
Denied....again.
Devastated.....
Because Hannah is not 12 years old, VNS appeal is upheld. They did not even read all the documentation. I am sure of it. She is not 12 = not approved. Who cares that she is a little girl with seizures that are completely out of control and this is our last hope.
And I quote: "Documentation submitted with you request for appeal, other available supporting information and the original denial information were presented to a second physician reviewer. The second physician reviewer's comments were " Converage is requested for implantation of vagus nerve stimulator for the treatment of refractory complex partial seizures in a 9 y/o BOY. Although there is substantial clinical evidence supporting the use of VNS for refractory epilepsy in children the VNS is FDA approved for adolescents and adults only.....This is NOT a covered benefit for TRI CARE beneficiaries under the age of 12. This denial is therefore upheld."
Well, gosh, I guess we will just wait until she is 12....
(the reason it is labeled for 12 year olds and older is because that is the youngest that was in the study. VNS's are implanted in 2 year olds!)
Great, huh??? They don't even have her gender right. I am sure they didn't even read through ANY or ALL of the pages and pages of Hannah's history... They don't care.
(BTW, the first physcian reviewer also said she was a 9 year old boy. hmmmm???)
As my rant continues...May I please remind you, this is the US ARMY's insurance. Yes, that would be the same ARMY that took my husband away from his family for over a year now....To fight in a war that my husband and all of the soldier's in Iraq are committed to winning (that's another story, for another blog, I guess).
SO....what do we do now???? I am not really sure. This lovely 6 page denial letter says that we can now send a request to the Appeals and Hearings Division, within 60 days of course. Because they really hurry all of their responses to major medical issues.... I am going to look into other options on Monday. I may even talk to a lawyer friend of ours.....
I called TRI CARE yesterday (before I received this letter, but was obviously already decided and sent out). "Is there anyway we can expedite this appeal?? My daughter's situation is quickly becoming an emergency. She is having seizures every day, sometimes multiple times a day. We are using rescue medications EVERY day, sometimes multiple times a day...."
lady on the phone" Oh my, let me write all that down and quickly send that to the department that is reviewing her case." yeah, whatever. Your computer probably told you while I was on the phone with you it was not approved. AHHHH!!!! I am so frustrated. Hannah had 15 seizures in the last 7 days; some of which were whoppers, lasting for hours. We have no ides why the increase.... Maybe Monday's EEG will shed some light. I sure hope so.
Meanwhile.... I have to put on my brave face, take my family to the airport in the morning, and watch my husband load a plane to go to the other side of the world. again.
Because Hannah is not 12 years old, VNS appeal is upheld. They did not even read all the documentation. I am sure of it. She is not 12 = not approved. Who cares that she is a little girl with seizures that are completely out of control and this is our last hope.
And I quote: "Documentation submitted with you request for appeal, other available supporting information and the original denial information were presented to a second physician reviewer. The second physician reviewer's comments were " Converage is requested for implantation of vagus nerve stimulator for the treatment of refractory complex partial seizures in a 9 y/o BOY. Although there is substantial clinical evidence supporting the use of VNS for refractory epilepsy in children the VNS is FDA approved for adolescents and adults only.....This is NOT a covered benefit for TRI CARE beneficiaries under the age of 12. This denial is therefore upheld."
Well, gosh, I guess we will just wait until she is 12....
(the reason it is labeled for 12 year olds and older is because that is the youngest that was in the study. VNS's are implanted in 2 year olds!)
Great, huh??? They don't even have her gender right. I am sure they didn't even read through ANY or ALL of the pages and pages of Hannah's history... They don't care.
(BTW, the first physcian reviewer also said she was a 9 year old boy. hmmmm???)
As my rant continues...May I please remind you, this is the US ARMY's insurance. Yes, that would be the same ARMY that took my husband away from his family for over a year now....To fight in a war that my husband and all of the soldier's in Iraq are committed to winning (that's another story, for another blog, I guess).
SO....what do we do now???? I am not really sure. This lovely 6 page denial letter says that we can now send a request to the Appeals and Hearings Division, within 60 days of course. Because they really hurry all of their responses to major medical issues.... I am going to look into other options on Monday. I may even talk to a lawyer friend of ours.....
I called TRI CARE yesterday (before I received this letter, but was obviously already decided and sent out). "Is there anyway we can expedite this appeal?? My daughter's situation is quickly becoming an emergency. She is having seizures every day, sometimes multiple times a day. We are using rescue medications EVERY day, sometimes multiple times a day...."
lady on the phone" Oh my, let me write all that down and quickly send that to the department that is reviewing her case." yeah, whatever. Your computer probably told you while I was on the phone with you it was not approved. AHHHH!!!! I am so frustrated. Hannah had 15 seizures in the last 7 days; some of which were whoppers, lasting for hours. We have no ides why the increase.... Maybe Monday's EEG will shed some light. I sure hope so.
Meanwhile.... I have to put on my brave face, take my family to the airport in the morning, and watch my husband load a plane to go to the other side of the world. again.
Tuesday, September 22, 2009
the plan....
After many phone calls back and forth with neurology we have decided to do an ambulatory EEG on Monday. Hopefully we can catch these seizures on EEG and see where they are coming from. We will be at the hospital in Cincinnati at 8 am. They will hook her up and then I will get her back to school. She is going to be H O T!! It is not going to be easy to get her to go to school (and who can blame her??). We have never been able to see what her EEG looks like in the "real world." I really want to see what it looks like under stress.
We will go back to the hospital sometime on Tuesday. They will unhook her and we will then figure out what the short term plan is. If the seizures stay at this frequency, Dr. Neuro will either start her on Banzel or Klonipine. Hopefully this will carry her through until surgery. Still no word about the VNS......
We will go back to the hospital sometime on Tuesday. They will unhook her and we will then figure out what the short term plan is. If the seizures stay at this frequency, Dr. Neuro will either start her on Banzel or Klonipine. Hopefully this will carry her through until surgery. Still no word about the VNS......
....more seizures
I am baffled why Hannah is being slammed with seizures. Due to my personality, I like to know...WHY?? WHY all the sudden? What are we doing different??? It drives me crazy and keeps me up at night...
Sunday was actually a pretty good day. A day of rest for Hannah. She needed it. We all needed it...
she went back to school yesterday. Blitzen alerted at 2 pm. More Versed. She came home fairly decent. But then he alerted again at 7 pm. and again at 9 pm. More Versed....We were able to get her to sleep by 10:45. WHEW!! I am wore out. And, grateful my husband is home to help me get through this rough spot.
SO, I have had many conversations with Dr. Neuro's nurse. We are to the point where we HAVE to do something. Question is...what??? There are two meds left. Benzel and Vigabatrim. Benzel is not known to work well with complex partials (but, Hannah is not known for doing anything by the book, so who knows??). Vigabatrim was just reapproved in the US and is known for working well with partial complex seizures. Problem is that one of the big side affects can be peripheral vision loss. Irreversible. I am not sure I am willing to take that chance given her odds of ANY medication being effective at this point. Less than 5%.... I think right now I am leaning towards starting Benzel and hope for a 2-3 month "honeymoon" period. That time frame may get us close to haveing VNS surgery.
Which leads me to my next...ahem...biff.
I called and spoke with the case manager working closely with the insurance company. She just spoke with the insurance on Friday. Here it goes..."Her case has been received and is in process. It may take up to 90 days." WHAT??? "But usually only takes around 30 days." UUGGHHH!! We are well past 30 days. I am so annoyed. The technology is there..... We need it...... But THEY won't get out of the way. I am going to call the insurance company myself today. I am sure I won't get anywhere and it will just make me more angry, but at least I can say I tried... Mama bear is waking up!!!!!
Meanwhile.... I am waitng for another phone call from Dr. Neuro to see what we are going to do.....
We have less than one glorious week left with dad. It has been so nice to have dual parenting again....I know it will be hard on everyone to let him go back. Including him.
While he was home, this past weekend, his unit in Iraq had a horrible helicopter crash. They got caught in a sand storm and flipped over. 11 were injured and one soldier lost his life. It has really made me sick to my stomach. Gary wonders if any of them will ever be able to fly again, because of the mental anguish. This makes it all the harder to let him go....
Sunday was actually a pretty good day. A day of rest for Hannah. She needed it. We all needed it...
she went back to school yesterday. Blitzen alerted at 2 pm. More Versed. She came home fairly decent. But then he alerted again at 7 pm. and again at 9 pm. More Versed....We were able to get her to sleep by 10:45. WHEW!! I am wore out. And, grateful my husband is home to help me get through this rough spot.
SO, I have had many conversations with Dr. Neuro's nurse. We are to the point where we HAVE to do something. Question is...what??? There are two meds left. Benzel and Vigabatrim. Benzel is not known to work well with complex partials (but, Hannah is not known for doing anything by the book, so who knows??). Vigabatrim was just reapproved in the US and is known for working well with partial complex seizures. Problem is that one of the big side affects can be peripheral vision loss. Irreversible. I am not sure I am willing to take that chance given her odds of ANY medication being effective at this point. Less than 5%.... I think right now I am leaning towards starting Benzel and hope for a 2-3 month "honeymoon" period. That time frame may get us close to haveing VNS surgery.
Which leads me to my next...ahem...biff.
I called and spoke with the case manager working closely with the insurance company. She just spoke with the insurance on Friday. Here it goes..."Her case has been received and is in process. It may take up to 90 days." WHAT??? "But usually only takes around 30 days." UUGGHHH!! We are well past 30 days. I am so annoyed. The technology is there..... We need it...... But THEY won't get out of the way. I am going to call the insurance company myself today. I am sure I won't get anywhere and it will just make me more angry, but at least I can say I tried... Mama bear is waking up!!!!!
Meanwhile.... I am waitng for another phone call from Dr. Neuro to see what we are going to do.....
We have less than one glorious week left with dad. It has been so nice to have dual parenting again....I know it will be hard on everyone to let him go back. Including him.
While he was home, this past weekend, his unit in Iraq had a horrible helicopter crash. They got caught in a sand storm and flipped over. 11 were injured and one soldier lost his life. It has really made me sick to my stomach. Gary wonders if any of them will ever be able to fly again, because of the mental anguish. This makes it all the harder to let him go....
Saturday, September 19, 2009
Pure bliss....and then... BOOM!
My husband, Gary, and I were able to get away this week for a few days. I liked to call it our "Getaway for Two." We went to Holmes County, Ohio; Amish country. Exhilerating....Relaxing.....Renewing.....Refreshing........mmmm. Need I say more???
I really wasn't ready to come home. We rented a cabin. It was sooo beautiful. I could have lived in it forever. It was a much needed respite for my husband and myself. We enjoyed just sitting in each others' presence with no interruptions. We have another week of daddy being home with us. Time is going so fast. It is going to be very hard to let him go back to Iraq...
But, like most things, all good things come to an end....Hannah has been slammed with seizures the last two days. Blitzen alerted at school yesterday. My wonderful mother was staying with the kids while we were away. She was able to go to school and give Hannah her resuce meds. (Naturally there was a substitute nurse who had never heard of giving versed nasal spray, let alone administer it). My mom is a retired nurse so she was able to give Hannah her meds without a problem. She was decent the rest of the day. Gary and I got home around 6 pm Friday. By 9 pm, Blitzen was alerting again. This time I gave her oral diezepam. It worked okay and she was able to go to sleep. The night went well. She woke up this morning and was definitely "off." By 8:30, Blitzen was alerting again. More Versed. Didn't work too well today. We battled seizures all day today. Another alert at 3 pm. Another alert again at 6 pm. UUUGGGHHH!!! She was completely out of control all afternoon. She was aggressive, her speech was very slurred, and she was drooling. Nothing could console her or keep her content....With the last alert, I gave her Diastat. My hope was that it would "reset her system." My bag of tricks was empty.... It took awhile, but finally at about 8:30, she seemed to be herself again. Hopefully it will be a quiet night.....
I have no idea why we have had this increase all of the sudden. She went almost a week with no seizures. I really did think she was leveling off after getting settled in school. Maybe that is still the case. She could be getting sick. She always has an increase in seizures when she is coming down with something. I will be calling Dr. Neuro on Monday. He may or may not start her on Vigabatrim. Really not sure what he will do. We are still holding out for VNS surgery. We still haven't heard anything from the insurance company. COME ON ALREADY!!!!
I really wasn't ready to come home. We rented a cabin. It was sooo beautiful. I could have lived in it forever. It was a much needed respite for my husband and myself. We enjoyed just sitting in each others' presence with no interruptions. We have another week of daddy being home with us. Time is going so fast. It is going to be very hard to let him go back to Iraq...
But, like most things, all good things come to an end....Hannah has been slammed with seizures the last two days. Blitzen alerted at school yesterday. My wonderful mother was staying with the kids while we were away. She was able to go to school and give Hannah her resuce meds. (Naturally there was a substitute nurse who had never heard of giving versed nasal spray, let alone administer it). My mom is a retired nurse so she was able to give Hannah her meds without a problem. She was decent the rest of the day. Gary and I got home around 6 pm Friday. By 9 pm, Blitzen was alerting again. This time I gave her oral diezepam. It worked okay and she was able to go to sleep. The night went well. She woke up this morning and was definitely "off." By 8:30, Blitzen was alerting again. More Versed. Didn't work too well today. We battled seizures all day today. Another alert at 3 pm. Another alert again at 6 pm. UUUGGGHHH!!! She was completely out of control all afternoon. She was aggressive, her speech was very slurred, and she was drooling. Nothing could console her or keep her content....With the last alert, I gave her Diastat. My hope was that it would "reset her system." My bag of tricks was empty.... It took awhile, but finally at about 8:30, she seemed to be herself again. Hopefully it will be a quiet night.....
I have no idea why we have had this increase all of the sudden. She went almost a week with no seizures. I really did think she was leveling off after getting settled in school. Maybe that is still the case. She could be getting sick. She always has an increase in seizures when she is coming down with something. I will be calling Dr. Neuro on Monday. He may or may not start her on Vigabatrim. Really not sure what he will do. We are still holding out for VNS surgery. We still haven't heard anything from the insurance company. COME ON ALREADY!!!!
Sunday, September 13, 2009
Daddy's home!!
For two enjoyable weeks, anyway.... The military flies them stand by, so we don't know until last minute whether or not they make the flight. He had two long days of flying, but finally at 11 am his plane landed in Dayton!! I only had an hour and a half to pick up the kids at school and get everybody to the airport. I surprised him by bringing the kids. It was soooo good to see him. The kids were squealing in delight (and I was on the inside!!) It has taken him all weekend to try to adjust to jet lag and the time change (Iraq is 8 hours ahead). But, he is doing better tonight.
Cute pic of dad and the kids going for a bike ride.... Gary can't get over at how green everything is....
I am SOOOO looking forward to Wednesday. He and I are leaving for our "GETAWAY FOR TWO!!!" My mom is coming to stay with the kids (yay for grandma's!!) so they can still go to school. It will nice just to have quietness....together....
Danielle....this is for you....
A pic of our house...
Cute pic of dad and the kids going for a bike ride.... Gary can't get over at how green everything is....
I am SOOOO looking forward to Wednesday. He and I are leaving for our "GETAWAY FOR TWO!!!" My mom is coming to stay with the kids (yay for grandma's!!) so they can still go to school. It will nice just to have quietness....together....
Danielle....this is for you....
A pic of our house...
Subscribe to:
Comments (Atom)
Beautiful Hannah...
