So I am calling on you again, my faithful friends because us Canavan families coild really use your help! We are trying to get The Ellen Show to spot light Canavan Disease. There are so many people out there that don't know about Canavan. The more people that know, the more help that will be available to cure this terrible disease!
So I am asking you today to please send an e-mail to The Ellen Show (http://ellen.warnerbros.com/show/respond/?PlugID=10) and ask them to spot light Canavan disease. If you feel that you don't know enough about this disease to do that, then just include in your e-mail a link to http://jacobscure.org/canavan-disease.php which explains what Canavan disease is.
All we want is a chance for our children to be healthy. You could have a hand in helping us achieve that dream. Please write and please share this blog post anywhere and everywhere you can,
Thank you for reading and thank you for writing and caring!!
Thursday, October 20, 2011
Thursday, October 6, 2011
Update with an update
Ok this is going to be pretty short cuz I am not feeling so hot and need to chill some.
So long story short another Neuro looked at Lily's EEG's as well as ordering another one yesterday. In my next post I will tell you more about him but like I said this one is going to be short.
Anyway, he said that Lily is having small seizures from the time she goes to sleep until she wakes up. So he wants her to start on a liquid Valium at bedtime. They are keeping her tonight just to make sure that she does not have any kind of reaction to it.
She is doing good, back to little miss everything, going nuts in this little room. Hopefully I will feel better in the morning and will be able to write a bigger update.
Thanks for reading!
So long story short another Neuro looked at Lily's EEG's as well as ordering another one yesterday. In my next post I will tell you more about him but like I said this one is going to be short.
Anyway, he said that Lily is having small seizures from the time she goes to sleep until she wakes up. So he wants her to start on a liquid Valium at bedtime. They are keeping her tonight just to make sure that she does not have any kind of reaction to it.
She is doing good, back to little miss everything, going nuts in this little room. Hopefully I will feel better in the morning and will be able to write a bigger update.
Thanks for reading!
Wednesday, October 5, 2011
So yet again
So Lily is back in the hospital. She may have had some seizures yesterday. I know those two sentences sound weird so let me start at the beginning.
I picked Lily up from school at 2:30 like I always do. I saw one of her teachers in the hall that told me that when she got Lily up from her nap she cried and didn't want to get up. This is pretty weird for Lily. Also that she didn't want snack, that she just wanted to play with her friends. Once again, odd. So I noticed as I was putting her in the car that she was rather pale looking. On the ride home I had to beg answers out of her for our typical ride home questions (how was school, what did you have for lunch, etc) if I didn't insist she just wouldn't answer me.
She was also saying off the wall things like she asked me to take her ponytail out. She didn't have a ponytail in. Things along that nature. And those of you who know Lily, you can vouch that she speaks very, very well. Yesterday she was not pronouncing her words well. She also had a bite mark on her wrist. She told me that she did it. She has never bit herself before. Like I said, just some really off the wall weird stuff.
Tracy tried in vain to reach the nurse at Dr. Victorio's office. He left a voicemail but we never got a return call (yeah, nice right? And yes Tracy did say on the vm what was going on. Guess they weren't concerned).
She finally did gain some color back and was acting better, not normal but better. So we just decided to keep an eye on her and see how the night went.
To start with her night was normal. She slept well, didn't move much and the pulse-ox was pretty stable. But then she started getting restless in her, pulse shot to 130 as oxygen dropped into the 70's but then she stabilized again quickly. We decided once again to wait it out but agreed if her oxygen dropped again we would call the Nuero on call. About ah hour later her oxygen dropped to 67 as well as doing some repetitive leg movements at the same time. So Tracy called and talked to him and he said to bring her in. We opted to have the Ambulance transport her in case she went into a full status. Now, Tracy went and stayed with CJ. So all I can really tell you is that Taz was once again the perfect gentlemen in the ambulance and at the hospital, they decided to admit Lily, she may have been having some absence seizures in the ambulance as Taz would get right up on her and sniff her mouth then she would stare off into space.
Anyway on to today. Today color is back, speech is back and Lily is acting normal. The Neuro on call is having an EEG done on her as we speak to see if there are some meds that we be better suited to put her on (yay! I am liking this guy!). I brought Taz home for a bit so he could eat, do doggy business, get a break and play with Isis till CJ gets home then we will go back up.
Also Taz would not leave Lily's side yesterday at all. Even in bed he often sleeps facing away from her but he stayed very close to her making sure that he had body contact. In the pic below you will see his paws are kind of bents over her leg. When I tried to move her leg off of him because I thought he was uncomfortable he gripped her leg with his paws so I couldn't move it. Best....dog....EVER!
Thank you for reading!
I picked Lily up from school at 2:30 like I always do. I saw one of her teachers in the hall that told me that when she got Lily up from her nap she cried and didn't want to get up. This is pretty weird for Lily. Also that she didn't want snack, that she just wanted to play with her friends. Once again, odd. So I noticed as I was putting her in the car that she was rather pale looking. On the ride home I had to beg answers out of her for our typical ride home questions (how was school, what did you have for lunch, etc) if I didn't insist she just wouldn't answer me.
She was also saying off the wall things like she asked me to take her ponytail out. She didn't have a ponytail in. Things along that nature. And those of you who know Lily, you can vouch that she speaks very, very well. Yesterday she was not pronouncing her words well. She also had a bite mark on her wrist. She told me that she did it. She has never bit herself before. Like I said, just some really off the wall weird stuff.
Tracy tried in vain to reach the nurse at Dr. Victorio's office. He left a voicemail but we never got a return call (yeah, nice right? And yes Tracy did say on the vm what was going on. Guess they weren't concerned).
She finally did gain some color back and was acting better, not normal but better. So we just decided to keep an eye on her and see how the night went.
To start with her night was normal. She slept well, didn't move much and the pulse-ox was pretty stable. But then she started getting restless in her, pulse shot to 130 as oxygen dropped into the 70's but then she stabilized again quickly. We decided once again to wait it out but agreed if her oxygen dropped again we would call the Nuero on call. About ah hour later her oxygen dropped to 67 as well as doing some repetitive leg movements at the same time. So Tracy called and talked to him and he said to bring her in. We opted to have the Ambulance transport her in case she went into a full status. Now, Tracy went and stayed with CJ. So all I can really tell you is that Taz was once again the perfect gentlemen in the ambulance and at the hospital, they decided to admit Lily, she may have been having some absence seizures in the ambulance as Taz would get right up on her and sniff her mouth then she would stare off into space.
Anyway on to today. Today color is back, speech is back and Lily is acting normal. The Neuro on call is having an EEG done on her as we speak to see if there are some meds that we be better suited to put her on (yay! I am liking this guy!). I brought Taz home for a bit so he could eat, do doggy business, get a break and play with Isis till CJ gets home then we will go back up.
Also Taz would not leave Lily's side yesterday at all. Even in bed he often sleeps facing away from her but he stayed very close to her making sure that he had body contact. In the pic below you will see his paws are kind of bents over her leg. When I tried to move her leg off of him because I thought he was uncomfortable he gripped her leg with his paws so I couldn't move it. Best....dog....EVER!
Thank you for reading!
Monday, October 3, 2011
So now what??
Well Saturday night Lily had another seizures, just two and half weeks after her last. This one was different than the others. Her Lamictal was upped on Wednesday, so we are thinking that instead of controlling the seizures it is actually making them worse which can happen with meds. I was very hopeful with the Lamictal, but it looks like the honeymoon period is over. Lily was admitted that night due to a drop in her oxygen. She is home now and doing well. Though I did keep her home from school today. I really feel that I need to keep a close eye on her until we figure out what's going on with the meds. Waiting to her back from her Neuro now. I think now is the time to take her up to Cleveland Clinic for a second opinion just to see if they have any other suggestions.
I must admit that I am pretty down right now. I know there are other meds that we can and will try, but then that brings along with it the worry of side effects, a possible increase in seizures, bad reactions to meds, etc, etc. I wish the FDA would hurry up and approve the Trigeminal Nerve Stimulator! Though Lily won't qualify for it until she has been on 4 meds with no relief. Looks like we may be heading that way.
Now the million dollar question....did Taz alert? Well, I had been telling people no, until I thought back to that night. Lily woke up right before the seizure. Tracy was on one side of her and I was on the other. Taz was at her feet. Tracy and I were both so focused on Lily, that I can't really tell you what Taz was doing. Once I got up to call 911 he moved up on her. At one point Tracy was having a hard time keep Lily on her side. She kept trying to turn on her back (sooooo not a good thing when she is throwing up during the seizure). Taz actually came up and pinned her on her side so she couldn't flip over.
I took him out before we left for the hospital. When we came back in the house, the EMT's had taken Lily out to the ambulance. Taz was going nuts looking for her. He rushed down the driveway and right into the ambulance! Normally when we walk out the front door we go straight to my car, so I was quite surprised when he seemed to know exactly where Lily was. Great nose on that dog! So Taz went for his first ride in the ambulance. He did excellent! The EMT's were very impressed on how well he behaved. So I got to be proud SD mama. lol
WHen we got to the hospital an EMT got him out of the back and handed my his leash. They got Lily out and down the hall we went. We were behind the stretcher with Lily on it and Taz could not see her. He was very anxious until I maneuvered him around so he could see her. Then he settled right down.
Once we got settled in a room we were bummed rushed by a few of the ER staff wanting to know if they could pet Taz and give him some doggy biscuits. I said that was fine and they fawned all over him, which of course he loved! But he maintained his gentlemanly SD status, just sitting and basking in all the attention. We saw several staff members that night and all of them commented on how well behaved he was. Taz did his normal Taz thing, curled up and went so sleep.
Eventually Lily woke up and wanted Taz up on her bed. The bed was pretty high up and Taz was afraid to jump. So I lifted him up (yes I am the man! lol) on the bed. The bed was pretty narrow and he was afraid that he was going to fall. So he little by little inched his way up to Lily.
Once she got admitted and we got in a room I put him up on that bed (yes lifting him again but this bed was not as narrow, so he was able to move around a bit). He settled down on her bed and (shock!) went to sleep. Lily, however would not go to sleep. I put on the TV for her and sat down on the couch. The Neuro on call woke me up an hour and a half later. I am so glad that Taz is so well behaved! He was right where I left him on the bed with Lily. While I was sleeping the nurse had come in and gave Lily her meds and checked her vitals. Taz stayed put! Good boy!
Taz did wonderful for his first seizure emergency with Lily. Oh and there has been the question of did he prealert. Yes, he did we however we failed to recognize it. See he was acting like a normal pet dog all day Saturday (except when we were at the stores) and that night. He doesn't normally do that. He always listens well. I just dismissed it as him settling in with us. Now I see that he was picking up on something that I wouldn't acknowledge (yes I had signs that day from Lily that one was coming. I dismissed those, not wanting to believe). Anyway, since the seizure has been and gone he is back to his normal mannerly self. I need to start paying more attention to what he is doing and to my own instinct. It's just hard! Every time her meds change or are upped I hope and pray that they will control her seizures. Thus far no good.
Please keep my little girl in your prayers. As these seizures get closer together I worry about the damage that may happen to her. There is only one change I want for my daughter and that is a seizure free life.
Thank you for reading.
I must admit that I am pretty down right now. I know there are other meds that we can and will try, but then that brings along with it the worry of side effects, a possible increase in seizures, bad reactions to meds, etc, etc. I wish the FDA would hurry up and approve the Trigeminal Nerve Stimulator! Though Lily won't qualify for it until she has been on 4 meds with no relief. Looks like we may be heading that way.
Now the million dollar question....did Taz alert? Well, I had been telling people no, until I thought back to that night. Lily woke up right before the seizure. Tracy was on one side of her and I was on the other. Taz was at her feet. Tracy and I were both so focused on Lily, that I can't really tell you what Taz was doing. Once I got up to call 911 he moved up on her. At one point Tracy was having a hard time keep Lily on her side. She kept trying to turn on her back (sooooo not a good thing when she is throwing up during the seizure). Taz actually came up and pinned her on her side so she couldn't flip over.
I took him out before we left for the hospital. When we came back in the house, the EMT's had taken Lily out to the ambulance. Taz was going nuts looking for her. He rushed down the driveway and right into the ambulance! Normally when we walk out the front door we go straight to my car, so I was quite surprised when he seemed to know exactly where Lily was. Great nose on that dog! So Taz went for his first ride in the ambulance. He did excellent! The EMT's were very impressed on how well he behaved. So I got to be proud SD mama. lol
WHen we got to the hospital an EMT got him out of the back and handed my his leash. They got Lily out and down the hall we went. We were behind the stretcher with Lily on it and Taz could not see her. He was very anxious until I maneuvered him around so he could see her. Then he settled right down.
Once we got settled in a room we were bummed rushed by a few of the ER staff wanting to know if they could pet Taz and give him some doggy biscuits. I said that was fine and they fawned all over him, which of course he loved! But he maintained his gentlemanly SD status, just sitting and basking in all the attention. We saw several staff members that night and all of them commented on how well behaved he was. Taz did his normal Taz thing, curled up and went so sleep.
Eventually Lily woke up and wanted Taz up on her bed. The bed was pretty high up and Taz was afraid to jump. So I lifted him up (yes I am the man! lol) on the bed. The bed was pretty narrow and he was afraid that he was going to fall. So he little by little inched his way up to Lily.
Once she got admitted and we got in a room I put him up on that bed (yes lifting him again but this bed was not as narrow, so he was able to move around a bit). He settled down on her bed and (shock!) went to sleep. Lily, however would not go to sleep. I put on the TV for her and sat down on the couch. The Neuro on call woke me up an hour and a half later. I am so glad that Taz is so well behaved! He was right where I left him on the bed with Lily. While I was sleeping the nurse had come in and gave Lily her meds and checked her vitals. Taz stayed put! Good boy!
Taz did wonderful for his first seizure emergency with Lily. Oh and there has been the question of did he prealert. Yes, he did we however we failed to recognize it. See he was acting like a normal pet dog all day Saturday (except when we were at the stores) and that night. He doesn't normally do that. He always listens well. I just dismissed it as him settling in with us. Now I see that he was picking up on something that I wouldn't acknowledge (yes I had signs that day from Lily that one was coming. I dismissed those, not wanting to believe). Anyway, since the seizure has been and gone he is back to his normal mannerly self. I need to start paying more attention to what he is doing and to my own instinct. It's just hard! Every time her meds change or are upped I hope and pray that they will control her seizures. Thus far no good.
Please keep my little girl in your prayers. As these seizures get closer together I worry about the damage that may happen to her. There is only one change I want for my daughter and that is a seizure free life.
Thank you for reading.
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