So far so good. She has only been on it two and 1/2 days but I can see an improvement with her sleep. I wish I could see her brain waves now! But until they come out with take home EEG machines that are easy to attach and use, that ain't gonna happen.
Each day I am becoming more optimistic about the Lamictal. Before she would often wake up or come close to waking up in the middle of the night. I would assume that this would lead to a non-restful sleep, hence after so many days triggering seizures. Oh my, did we jut finally figure out a trigger for her? Hmmm.....anyway that is my theory. So anyway since starting the Lamictal she is not opening her eyes in her sleep much at all. Maybe once or twice the entire night (I know cause I am watching her, yes the entire night!) and before it was a good 20-30 times a night. Also she has not been sleeping with her eyelids cracked! Yay! That was enough to give my husband and myself serious heart palpitations on more than one occasion. So that has stopped. And and and(!) she has started talking a little in her sleep. Last night she yelled puppies! lol So since this is new I just have to wonder if her brain was misfiring so much that she was not able to dream. More of my non-medical theories! lol
So whatever you do-pray, light a candle, dance around a fire, send vibes, whatever, please do it for this med to work for her!
As always thank you for reading!
Friday, July 29, 2011
Thursday, July 28, 2011
As Paul Harvey Would Say...."And now the rest of the story!"
First I would like to say thank you to all those who contacted me that understand where I am coming from. And please by all means, don't stop! It's very nice to have someone say, I know how you feel and it sucks! So even if you child doesn't have Epilepsy, if they just have something else going on and you have the same feelings I listed in the post down below, please e-mail me. We can swap "war stories" and offer each other support!
Next order of business.....my outlook is much brighter today. I wouldn't go so far as to say I am back to 100% optimism but I am getting there.
I want to go into Lily's EEG a little more. I believe I mentioned in the last post that she was misfiring constantly in her sleep. This unfortunately has left another one of our questions unanswered. Lily can become very active in her sleep. I had asked her Neuro how we could tell whether it was just normal REM or if it was seizure-like activity. She said if we end up doing an EEG we should be able to tell. Well, they cannot tell. Because her brain is misfiring so often they can't "see" the brain REM waves the way they need to to determine whether it is REM or not. Sucks, but doesn't change much. So we still get to jump every time she moves. But honestly even if they could have been able to tell, it still wouldn't matter. I am learning rapidly that brain waves can change at any time for reasons unknown. So had they be able to view the REM it wouldn't mean that she was always having REM. I have decided to just take care of what I can see outside her body and let the Neuro's deal with what is going on on the inside.
Lily was taken care of in the hospital by Dr. Holler. You may remember from my previous posts that we LOVE Dr Holler and as usual she proved that our love was not ill-placed. She was very good at letting us know what was going on, be up front and honest with us while still being reassuring and comforting. I wish that some medical schools would take a video of her in action and tell their students that THIS is what you strive for as a Dr. Also I was outside sitting on the curb, messing around on my phone as Dr. Holler and her nurse were coming out of the hospital and crossing the street to go to the medical building. I didn't see them but they did see me. Now I am sitting on this curb, crossed-leg, with my head bent and I assuming I looked every ounce a woman in despair (which I wasn't. I was still ok at that point) but my head was bent because my phone was sitting in my lap. Any way, I hear a compassion filled voice say "hey, are you ok?" Yeah it was Dr. Holler making sure I was all right. I said yes that I was and quickly realized why she had stopped. I picked my phone up off my lap and waved it at her. She gave me a big smile, nodded and continued on her way. I am still very much touched by the gesture. There are not many Dr's out there that would take even a few minutes out of their day to do that. She is a great Dr but also an amazing person.
Another surprise that I had that day was Lily's Neuro showing up in Lily's room. She was plain clothed, with no bag of tricks (tools or doing a neuro eval), ect, ect. It was weird seeing her like that because I am so used to her having a lab coat on. She wanted to come in and see if we were all right (not Lily, she knew Lily was ok) and let us know about what was going on. I was really surprised to say the least.
Ok moving on.....So Tracy and I (despite Dr. Holler telling us NOT to do this, that is wasn't necessary as we HAVE woke up when she has been seizing and she has no long term damage, etc, etc) are sleeping in shifts. I REALLY cannot take this waking up to her having a seizure anymore. It's just the not knowing how long she has been seizing that I can't take. So I will sleep after Tracy gets home from work until midnight or there abouts, then I get up and he sleeps till 6-7 am. Then I take about an hour or so nap till he leaves for work. Yeah I do realize that it sounds crazy but here's the deal. Before I was getting maybe 3-4 broken hours of sleep a night. Same with Tracy. Now we are both getting solid undisturbed sleep and sleeping longer than we had before. It was amazing for me to lay down this past even and actually just be out, not waking up at every little sound. I have REALLY missed restful sleep! So I am one happy camper. The only thing that sucks is Tracy and I are not going to get a whole lot of time to spend together, but hopefully we can make it for that on the weekend.
Lily started Lamictal today. She has only had one dose and tonight has been sleeping peacefully with not much activity in her sleep. Hopefully this is a sign that we are on the right track!
And a couple things about the Blog I would like to let you know. First, at the top you will see a tab labeled "About Lily". If you don't know her back story check it out. Second, I am going to be posting another page like that one, but this one will have resources on it for special needs families, so make sure you bookmark the blog and come back in about a week or so to check that out. And finally when we hit 6000 hits on Lily's blog (we are almost there) I am going to host a giveaway, make sue to come back for details on that!
As always thank you for reading! And now you know the rest of the story! Good day!
Next order of business.....my outlook is much brighter today. I wouldn't go so far as to say I am back to 100% optimism but I am getting there.
I want to go into Lily's EEG a little more. I believe I mentioned in the last post that she was misfiring constantly in her sleep. This unfortunately has left another one of our questions unanswered. Lily can become very active in her sleep. I had asked her Neuro how we could tell whether it was just normal REM or if it was seizure-like activity. She said if we end up doing an EEG we should be able to tell. Well, they cannot tell. Because her brain is misfiring so often they can't "see" the brain REM waves the way they need to to determine whether it is REM or not. Sucks, but doesn't change much. So we still get to jump every time she moves. But honestly even if they could have been able to tell, it still wouldn't matter. I am learning rapidly that brain waves can change at any time for reasons unknown. So had they be able to view the REM it wouldn't mean that she was always having REM. I have decided to just take care of what I can see outside her body and let the Neuro's deal with what is going on on the inside.
Lily was taken care of in the hospital by Dr. Holler. You may remember from my previous posts that we LOVE Dr Holler and as usual she proved that our love was not ill-placed. She was very good at letting us know what was going on, be up front and honest with us while still being reassuring and comforting. I wish that some medical schools would take a video of her in action and tell their students that THIS is what you strive for as a Dr. Also I was outside sitting on the curb, messing around on my phone as Dr. Holler and her nurse were coming out of the hospital and crossing the street to go to the medical building. I didn't see them but they did see me. Now I am sitting on this curb, crossed-leg, with my head bent and I assuming I looked every ounce a woman in despair (which I wasn't. I was still ok at that point) but my head was bent because my phone was sitting in my lap. Any way, I hear a compassion filled voice say "hey, are you ok?" Yeah it was Dr. Holler making sure I was all right. I said yes that I was and quickly realized why she had stopped. I picked my phone up off my lap and waved it at her. She gave me a big smile, nodded and continued on her way. I am still very much touched by the gesture. There are not many Dr's out there that would take even a few minutes out of their day to do that. She is a great Dr but also an amazing person.
Another surprise that I had that day was Lily's Neuro showing up in Lily's room. She was plain clothed, with no bag of tricks (tools or doing a neuro eval), ect, ect. It was weird seeing her like that because I am so used to her having a lab coat on. She wanted to come in and see if we were all right (not Lily, she knew Lily was ok) and let us know about what was going on. I was really surprised to say the least.
Ok moving on.....So Tracy and I (despite Dr. Holler telling us NOT to do this, that is wasn't necessary as we HAVE woke up when she has been seizing and she has no long term damage, etc, etc) are sleeping in shifts. I REALLY cannot take this waking up to her having a seizure anymore. It's just the not knowing how long she has been seizing that I can't take. So I will sleep after Tracy gets home from work until midnight or there abouts, then I get up and he sleeps till 6-7 am. Then I take about an hour or so nap till he leaves for work. Yeah I do realize that it sounds crazy but here's the deal. Before I was getting maybe 3-4 broken hours of sleep a night. Same with Tracy. Now we are both getting solid undisturbed sleep and sleeping longer than we had before. It was amazing for me to lay down this past even and actually just be out, not waking up at every little sound. I have REALLY missed restful sleep! So I am one happy camper. The only thing that sucks is Tracy and I are not going to get a whole lot of time to spend together, but hopefully we can make it for that on the weekend.
Lily started Lamictal today. She has only had one dose and tonight has been sleeping peacefully with not much activity in her sleep. Hopefully this is a sign that we are on the right track!
And a couple things about the Blog I would like to let you know. First, at the top you will see a tab labeled "About Lily". If you don't know her back story check it out. Second, I am going to be posting another page like that one, but this one will have resources on it for special needs families, so make sure you bookmark the blog and come back in about a week or so to check that out. And finally when we hit 6000 hits on Lily's blog (we are almost there) I am going to host a giveaway, make sue to come back for details on that!
As always thank you for reading! And now you know the rest of the story! Good day!
Tuesday, July 26, 2011
The Basic instinct
The basic instinct of most parents are to protect their children. When something happens that is out of your control, it rips at your soul. It tears at the very fabric of your being, making you question everything.
If you haven't guessed by now this isn't going to be one of my upbeat posts. And quite honestly that makes me mad. I hate self pity when I am doing it to myself. But I have to get this out or I feel like I will burn from the inside out.
SO Lily's EEG results were not what I was hoping for. But none of these medical tests have been so I guess I should have seen it coming, but I am most of the time the eternal optimistic.
So the EEG revealed that her brain is misfiring almost constantly in her sleep. Which of course explains why she has her seizures in her sleep and why they don't stop without Diastat or something stronger. I was expecting misfiring when she was going to sleep and where she was waking up but not through almost all her sleep. That has thrown me for a loop.
Also back when she had her EEG in Feb '10 the misfiring was only coming fro one area of the brain. Now it is coming from all over. Which means that a grand mal is a major possibility. They are not necessarily any more dangerous than what she has already had but they are damn sure more scary to see. Keep your fingers crossed that it doesn't happen please!!
Also she is still having misfiring while she is awake. Now it is no where near what she is having during the night, but it is still happening which means there is a possibility for a awake seizure. This crushed me because I was hoping that the Keppra was at least taking full care of those, but that is not the case.
So they are going to put her on Lamictal as well as the Keppra. They are pretty optimistic that it will take care of things. If this doesn't work, there are still 17 other meds that we can try as well as VNS and the Keto diet but the last two are just of nothing else works.
The whole meds thing scares me. I worry about long term effects and side effects.
And above all else I am just plain scared. Scared that she will suffer brain damage or worse.
AND I HATE NO BEING ABLE TO PROTECT MY CHILD.
So now comes my quest and if you are reading this, you can help me out. I am looking for a family that has a child that has seizures like Lily's. The families I know with children with Epilepsy, their children's seizures are different. So please, please, please repost this blog and maybe someone, somewhere will read it and say hey that's my kid almost to a T. And if you are that person, contact me please at hollie@lilysfight.org.
I will post more later this week.I have more to say but right now I am just spent and my head is killing me!
Oh and yes Lily is ok. She woke up Saturday at 4pm and has been back to her normal self ever since. Yay! Here is a pic I will leave you with. I had my makeup with me so I let her put some on in her hospital bed.
As always thank you so much for reading!
If you haven't guessed by now this isn't going to be one of my upbeat posts. And quite honestly that makes me mad. I hate self pity when I am doing it to myself. But I have to get this out or I feel like I will burn from the inside out.
SO Lily's EEG results were not what I was hoping for. But none of these medical tests have been so I guess I should have seen it coming, but I am most of the time the eternal optimistic.
So the EEG revealed that her brain is misfiring almost constantly in her sleep. Which of course explains why she has her seizures in her sleep and why they don't stop without Diastat or something stronger. I was expecting misfiring when she was going to sleep and where she was waking up but not through almost all her sleep. That has thrown me for a loop.
Also back when she had her EEG in Feb '10 the misfiring was only coming fro one area of the brain. Now it is coming from all over. Which means that a grand mal is a major possibility. They are not necessarily any more dangerous than what she has already had but they are damn sure more scary to see. Keep your fingers crossed that it doesn't happen please!!
Also she is still having misfiring while she is awake. Now it is no where near what she is having during the night, but it is still happening which means there is a possibility for a awake seizure. This crushed me because I was hoping that the Keppra was at least taking full care of those, but that is not the case.
So they are going to put her on Lamictal as well as the Keppra. They are pretty optimistic that it will take care of things. If this doesn't work, there are still 17 other meds that we can try as well as VNS and the Keto diet but the last two are just of nothing else works.
The whole meds thing scares me. I worry about long term effects and side effects.
And above all else I am just plain scared. Scared that she will suffer brain damage or worse.
AND I HATE NO BEING ABLE TO PROTECT MY CHILD.
So now comes my quest and if you are reading this, you can help me out. I am looking for a family that has a child that has seizures like Lily's. The families I know with children with Epilepsy, their children's seizures are different. So please, please, please repost this blog and maybe someone, somewhere will read it and say hey that's my kid almost to a T. And if you are that person, contact me please at hollie@lilysfight.org.
I will post more later this week.I have more to say but right now I am just spent and my head is killing me!
Oh and yes Lily is ok. She woke up Saturday at 4pm and has been back to her normal self ever since. Yay! Here is a pic I will leave you with. I had my makeup with me so I let her put some on in her hospital bed.
As always thank you so much for reading!
Saturday, July 23, 2011
And here we go again!
So I am writing this blog post from a room at Akron Children's Hospital. Lily had another seizure this morning. This one, like the last two were different. We were blessed, however because the amazing and wonderful Dr. Holler was the Neuro on call today. Dr. Holler wants Lily to stay tonight and possibly tomorrow night because they are not able to do a video EEG on Lily till Monday. This is the EEG I wanted a month ago that Lily's old Neuro (yeah we are switching to Holler) wanted to "wait and see" to do. Dr. Holler who saw Lily after her seizure in June had sounded like had she been Lily's Neuro she would have done it. Now Dr. Holler is ordering it. To heck with it all. So glad! LOVE HER!
Anyway, we know Lily seized for at least an hour, if not longer. She had cluster seizures instead of a status and even the after-math of the seizure was different. She slept until about 4:00 pm and then woke up back to her normal self. Yay! I can breath a sigh of relief. When she has such long seizures like that I always worry about long term damage. So far, so good.
She is going to miss her riding lesson at Pegasus on Monday. She is NOT going to be happy about that, but it can't be helped. Hopefully later this week we can go out and she can visit Miss Mollie.
I am so happy she is back to normal. She just looked at me and said "Mom, I had a seizure this morning, but I am ok this afternoon so we are going home tonight!" Funny, fumy girl.
I hope that tomorrow when Dr. Holler see's her like this, that maybe she will reconsider keeping us tomorrow night and just let us come back on Monday for the EGG. Keep your fingers crossed for me please!
As always, thank you for reading!!
Anyway, we know Lily seized for at least an hour, if not longer. She had cluster seizures instead of a status and even the after-math of the seizure was different. She slept until about 4:00 pm and then woke up back to her normal self. Yay! I can breath a sigh of relief. When she has such long seizures like that I always worry about long term damage. So far, so good.
She is going to miss her riding lesson at Pegasus on Monday. She is NOT going to be happy about that, but it can't be helped. Hopefully later this week we can go out and she can visit Miss Mollie.
I am so happy she is back to normal. She just looked at me and said "Mom, I had a seizure this morning, but I am ok this afternoon so we are going home tonight!" Funny, fumy girl.
I hope that tomorrow when Dr. Holler see's her like this, that maybe she will reconsider keeping us tomorrow night and just let us come back on Monday for the EGG. Keep your fingers crossed for me please!
As always, thank you for reading!!
Wednesday, July 20, 2011
Pray
I know I don't have a huge amount of followers but I know that I have loyal group. I must ask you a favor.
In Texas there is a beautiful little baby with Canavan that needs your prayers. I will not go into what is happening as that is not my place but I just wanted to ask my visitors to please pray for a miracle for baby Jase. Pray, light a candle, send vibes, whatever you do please do it for this sweet little lamb.
You can read about Jase at https://www.facebook.com/#!/JasesFight
Also there is a Prayer Event set up on Facebook for Jase. Anyone can attend. https://www.facebook.com/?sk=events&ap=1#!/event.php?eid=149084865168640
Thank you.
In Texas there is a beautiful little baby with Canavan that needs your prayers. I will not go into what is happening as that is not my place but I just wanted to ask my visitors to please pray for a miracle for baby Jase. Pray, light a candle, send vibes, whatever you do please do it for this sweet little lamb.
You can read about Jase at https://www.facebook.com/#!/JasesFight
Also there is a Prayer Event set up on Facebook for Jase. Anyone can attend. https://www.facebook.com/?sk=events&ap=1#!/event.php?eid=149084865168640
Thank you.
Just getting caught up and a thank you!
So first off I want to say thank you to everyone who came to Lily's Poker Run on Saturday! It was a gorgeous day and we had a fabulous group of folks attend. We appreciate your love and support more than you will ever know! I also want to thank the wonderful folks who organized the event. You guys do a wonderful job!!!
Lily has recently started horse back riding therapy at Pegasus. I had read that this can help with small motor skills and honestly after riding in my past I really had a hard time seeing how that could help. I can totally understand how it would help with large motor skills but not small. Well, I guess it doesn't matter whether I understand or not because Lily has begin writing some letters! I have worked with her before to try to get her to write some to no avail. However two weeks after starting her therapy at Pegasus, she was writing L's unprompted and is now working on writing her name. Very cool!! She is also going to be in a horse show at Pegasus in August. Can't wait!!
Sorry for the lack of quality with the pic. It was taken through some glass and with my phone so it's about the best I can do right now! I will post some better ones after the show.
The heat here has been unbelievable! Makes it hard for us to do any kind of burn some energy off activities! We have been playing red light, green light in the living room and a few other games. We try to go out in the evening to play as we will but then we have to deal with the mosquitoes! Can't win right now, I tell ya!
54 days till we go to get Lily's service dog and for training. I cannot wait! If you look down a few posts you will see there is a counter here on the page. When it drops off the page I will post it up again so everyone can count down with us.
As always thank you so much for reading!!
Lily has recently started horse back riding therapy at Pegasus. I had read that this can help with small motor skills and honestly after riding in my past I really had a hard time seeing how that could help. I can totally understand how it would help with large motor skills but not small. Well, I guess it doesn't matter whether I understand or not because Lily has begin writing some letters! I have worked with her before to try to get her to write some to no avail. However two weeks after starting her therapy at Pegasus, she was writing L's unprompted and is now working on writing her name. Very cool!! She is also going to be in a horse show at Pegasus in August. Can't wait!!
Sorry for the lack of quality with the pic. It was taken through some glass and with my phone so it's about the best I can do right now! I will post some better ones after the show.
The heat here has been unbelievable! Makes it hard for us to do any kind of burn some energy off activities! We have been playing red light, green light in the living room and a few other games. We try to go out in the evening to play as we will but then we have to deal with the mosquitoes! Can't win right now, I tell ya!
54 days till we go to get Lily's service dog and for training. I cannot wait! If you look down a few posts you will see there is a counter here on the page. When it drops off the page I will post it up again so everyone can count down with us.
As always thank you so much for reading!!
Monday, July 18, 2011
Long overdue update!
Sorry that I have been slacking on Lily's blog again. Things have been busy and a bit crazy here or there.
So on July 3rd Lily had yet another seizure. Yup 3 in 2 months. Totally not how she usually rolls but Epilepsy is unpredictable. The countdown is on till we get her dog and we REALLY can't wait now!
The seizure on the 3rd was at 7 pm, at the tail end of a much needed nap. She has never, ever had a seizure during a nap before, so things are really changing. And the seizure presented as an absence seizure (staring, no movement at all) so our nerves are very frazzled right now. If she were to have one of those while we were all asleep and it turned into a Status seizure......well it would be all bad, like really bad! So mama here has been averaging 3-4 hours of sleep a night. Tracy let's me roll with it (those of you who know me know that as I am soooooo stubborn, he really has little choice) but when it all catches up with me and my body and mind can't take it anymore he makes me get a good nights rest and he takes over the seizure watch for that night.
Lily's Keppra has been upped again and she is almost at a max dose. Once she hits that they will have to try her on something else. This scares the crap out of me because they have no idea how she is going to react to the meds until she is on them. Could make the seizures stop or it could do nothing at all or it could make the seizures more frequent and worse. So when that time comes I am going to be seriously holding my breath.
Also with each increase of Keppra she has been getting harder and harder to control. I recently read that vitamin b6 can relieve that side effect when taking Keppra, so Lily's Neuro put her on b6. HUGE difference!! So if you have a child on Keppra and they are having some behavioral issues, look into the b6! Also I have read that it may decrease seizure activity, so we are all about it.
Since the 3rd Lily has been doing fine. Well she was peeing the bed at night for about a week afterward but she has since stopped. That happens sometimes with her after a seizure. We are never sure if it's due to the seizure and her brain trying to reset itself or if its due to the increase of Keppra. Either way it always makes me nervous since she has been night potty trained for well over a year.
As always thank you for reading! I will try to keep up with the blog better!
So on July 3rd Lily had yet another seizure. Yup 3 in 2 months. Totally not how she usually rolls but Epilepsy is unpredictable. The countdown is on till we get her dog and we REALLY can't wait now!
The seizure on the 3rd was at 7 pm, at the tail end of a much needed nap. She has never, ever had a seizure during a nap before, so things are really changing. And the seizure presented as an absence seizure (staring, no movement at all) so our nerves are very frazzled right now. If she were to have one of those while we were all asleep and it turned into a Status seizure......well it would be all bad, like really bad! So mama here has been averaging 3-4 hours of sleep a night. Tracy let's me roll with it (those of you who know me know that as I am soooooo stubborn, he really has little choice) but when it all catches up with me and my body and mind can't take it anymore he makes me get a good nights rest and he takes over the seizure watch for that night.
Lily's Keppra has been upped again and she is almost at a max dose. Once she hits that they will have to try her on something else. This scares the crap out of me because they have no idea how she is going to react to the meds until she is on them. Could make the seizures stop or it could do nothing at all or it could make the seizures more frequent and worse. So when that time comes I am going to be seriously holding my breath.
Also with each increase of Keppra she has been getting harder and harder to control. I recently read that vitamin b6 can relieve that side effect when taking Keppra, so Lily's Neuro put her on b6. HUGE difference!! So if you have a child on Keppra and they are having some behavioral issues, look into the b6! Also I have read that it may decrease seizure activity, so we are all about it.
Since the 3rd Lily has been doing fine. Well she was peeing the bed at night for about a week afterward but she has since stopped. That happens sometimes with her after a seizure. We are never sure if it's due to the seizure and her brain trying to reset itself or if its due to the increase of Keppra. Either way it always makes me nervous since she has been night potty trained for well over a year.
As always thank you for reading! I will try to keep up with the blog better!
Friday, July 15, 2011
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