Well Kiera is still continuing to have the prolonged seizures, Tuesday night at midnight while she was sleeping she had a 16 minute GTC, then about 2 hours later she had a 10 minute cluster seizure.
Nothing has really changed as far as medications or her health so there seems to be no cause for the increase.
Kiera, although the seizures have increased, is still doing well, so that is something that we can hang our hat on.
Last night we watched American Idol (AI) and she was smiling a bit while vocalizing some, that was good to see.
Kiera and all the children that have CDKL5 are tough little cookies, they go through so much but keep bouncing back. Sometimes I think it's us parents that have a harder time with things as far as our children go.
Kiera's Road with CDKL-5 I am writing this blog as a journal, but also to bring awarness to this rare disorder. Thank you for reading!
Thursday, January 22, 2009
Friday, January 16, 2009
Another long seizure
I am feeling kind of sad today, Kiera had another long seizure on Wednesday, it was a 19 minute seizure.
She is not ill or anything like that, and even if she was sick, she would most likely not have any seizure activity.
Because of that, there is nothing to blame the seizure on. She is on three seizure medications now, and all are at their max doses. What do we have to loose if she comes off some of the medication? on the other hand, what would we have to gain if she was to come off some of them?
She is not ill or anything like that, and even if she was sick, she would most likely not have any seizure activity.
Because of that, there is nothing to blame the seizure on. She is on three seizure medications now, and all are at their max doses. What do we have to loose if she comes off some of the medication? on the other hand, what would we have to gain if she was to come off some of them?
Monday, December 29, 2008
Another curve ball thrown at this rollercoaster.
Kiera starting to seize last night around 10:30, she received a dose of Diastat at the 10 minute mark. The seizure continued for another 12 minutes so per protocol, she got her 2nd dose, the seizure still did not stop so 911 was called. By the time Kiera arrived to the Hospital, the seizure had stoped. The Doctors checked all of her vitals/levels and everything checked out just fine. Kiera did not have an elevated white count either, so there was no infection detected.
The thing is that when the seizure finally stoped, she started to vocalize like nothing ever happened. Some of you know that we are going to decrease seizure medications, we will start this in the beginning of the New Year, well because she had this prolonged seizure we will have to now wait for some more time to pass without any other issues.
Kiera was also put on a medication that lowers the ratio of the Keto diet so with that medication, her diet ratio went from 2:5 to 1:9, with blood ketone levels reading at around 3, Kiera should have a reading at about 5.
So here's my concern, Kiera's Epileptologist is a bit reluctant to decrease Kiera's seizure medications. The Epileptologist is also new to Kiera and new to this population.
She has worked with people that are developing normally who have Epilepsy, so to her ANY seizure is unacceptable. She has gotten better with us over the last few months, and is starting to see our views on this as far as what we feel is good control and what is unacceptable seizure control in regards to Kiera.
We feel that Kiera will seize on or off medications, she has been on 19 seizure medications throughout her life and only 1, can we say helped a bit. The diet, on the other hand does work for Kiera.
So today we will need to talk with the dietitian about increasing the ratio of the diet, all conversations need to go through the Epi first before making any changes (as it should be) but the Dietitian has been administering the diet for 25+ years. I feel that if you are on the diet it's because you have gone through most medications and that maybe the seizures are intractable (drug resistant) so I feel that the dietitian has more experience with this population.
I also understand the Epi's view, she said it herself, she asked us what other med do we want to try after Kiera comes off the first med that we tirate down? we said "Nothing else" she was a bit surprised, well maybe more concerned. We said that if things get touchy we would adjust the diet.
If Kiera can have a 36 minute seizure with all of her medications at the highest they can be (she is on 3 sz meds) that tells me that the medications don't work for Kiera. I even told her that when Kiera was very young she was taken off her medications and the Doctors report stated that she was seizing just the same. What a sad day it is today, what is happening to my girl? well the good thing is the prolonged seizure did not seem to faze her.
She is one tough girl!
UPDATE: 1/13/09
Since the 36 minute seizure, Kiera has not had one more seizure!
We did increase the Diet ratio, but just 4 days ago. now I am wondering if we should have just left it alone? It is always a guessing game isn't it?
The thing is that when the seizure finally stoped, she started to vocalize like nothing ever happened. Some of you know that we are going to decrease seizure medications, we will start this in the beginning of the New Year, well because she had this prolonged seizure we will have to now wait for some more time to pass without any other issues.
Kiera was also put on a medication that lowers the ratio of the Keto diet so with that medication, her diet ratio went from 2:5 to 1:9, with blood ketone levels reading at around 3, Kiera should have a reading at about 5.
So here's my concern, Kiera's Epileptologist is a bit reluctant to decrease Kiera's seizure medications. The Epileptologist is also new to Kiera and new to this population.
She has worked with people that are developing normally who have Epilepsy, so to her ANY seizure is unacceptable. She has gotten better with us over the last few months, and is starting to see our views on this as far as what we feel is good control and what is unacceptable seizure control in regards to Kiera.
We feel that Kiera will seize on or off medications, she has been on 19 seizure medications throughout her life and only 1, can we say helped a bit. The diet, on the other hand does work for Kiera.
So today we will need to talk with the dietitian about increasing the ratio of the diet, all conversations need to go through the Epi first before making any changes (as it should be) but the Dietitian has been administering the diet for 25+ years. I feel that if you are on the diet it's because you have gone through most medications and that maybe the seizures are intractable (drug resistant) so I feel that the dietitian has more experience with this population.
I also understand the Epi's view, she said it herself, she asked us what other med do we want to try after Kiera comes off the first med that we tirate down? we said "Nothing else" she was a bit surprised, well maybe more concerned. We said that if things get touchy we would adjust the diet.
If Kiera can have a 36 minute seizure with all of her medications at the highest they can be (she is on 3 sz meds) that tells me that the medications don't work for Kiera. I even told her that when Kiera was very young she was taken off her medications and the Doctors report stated that she was seizing just the same. What a sad day it is today, what is happening to my girl? well the good thing is the prolonged seizure did not seem to faze her.
She is one tough girl!
UPDATE: 1/13/09
Since the 36 minute seizure, Kiera has not had one more seizure!
We did increase the Diet ratio, but just 4 days ago. now I am wondering if we should have just left it alone? It is always a guessing game isn't it?
Tuesday, December 23, 2008
Christmas is coming!
Another month has almost come and gone.
Kiera has been doing very well health wise, we have been so happy about that.
Changing her diet to the RCF has made a big difference in her seizure control, but just over the last few days the seizures are creeping in a bit.
We have made a plan with Kiera's Epileptologist to start to decrease her Topamax in the beginning of the new year. We will keep our fingers crossed in hopes that the seizures do not invade her life for the worst.
The Doctor down at the Baylor College of Medicine has finished her research study that involved Kiera and 2 other young girls that have CDKL5. We just signed the consent form and hope to get to get our hands on the study very soon!
I am looking forward to talking with the other 2 families that were in this study also.
They are quite a bit younger than Kiera but I know how much it has helped me to be able to connect with all the other families through-out the world that are also dealing with CDKL5.
We had a Christmas gathering at Kiera's home last night. It was very nice, the house was full of Friends. Kiera was in a great mood even though she had a 18 minute seizure just the night before!
She wanted her voice heard and it was!
I love to see the attitude, boy does that put a smile on my face!!
Merry Christmas all, and have a very happy and safe New Year!!
Saturday, November 1, 2008
Things are quiet again!
Over the last few weeks Kiera has been dong very well!
I think that she is over her tummy thing and the lung infection. Her seizures have been very short, just seconds long. The other day, however she did have a 9 min 55 sec seizure and she gets a rescue med after 10 minutes so that was close!
But over all she is getting back to her loud vocal self!
She went to a Halloween dance and was a jail bird!
Kiera also changed her diet to the RCF from the keto-cal and again it has made a world of difference, the diet REALLY does work for her, we are so happy that something does.
I am excited to start to wean some of her seizure medications and see what all she will be able to do again. She is the max with all 3 seizure medications that her Epileptologist is surprised that Kiera does not just sleep all day!
I need to get some more pictures of Kiera, her hair is getting long and her skin is looking good, she is starting to have a more mature looking face.
right now things are quiet and we are enjoying that for the moment!
I think that she is over her tummy thing and the lung infection. Her seizures have been very short, just seconds long. The other day, however she did have a 9 min 55 sec seizure and she gets a rescue med after 10 minutes so that was close!
But over all she is getting back to her loud vocal self!
She went to a Halloween dance and was a jail bird!
Kiera also changed her diet to the RCF from the keto-cal and again it has made a world of difference, the diet REALLY does work for her, we are so happy that something does.
I am excited to start to wean some of her seizure medications and see what all she will be able to do again. She is the max with all 3 seizure medications that her Epileptologist is surprised that Kiera does not just sleep all day!
I need to get some more pictures of Kiera, her hair is getting long and her skin is looking good, she is starting to have a more mature looking face.
right now things are quiet and we are enjoying that for the moment!
Thursday, October 16, 2008
Last week
Kiera had a short bout with pnuemonia again, she stayed in the hospital for 1 night, that is our record, one night only! She has an reaction from the first IV antibotic, it's called moxifloxiciln. she has had a reaction in the past from this antibiotic, but at the time I was not in the room, I took a dinner break and my sweet husband could not remember what iv antibiotic she had trouble with.
When I came back after dinner, the Doctor said that they just gave her an IV medication for the pnuemonia. I asked what it was, he told me and I saif that Kiera has had an allergic reaction to this drugs one time last fall.
He thought that since the medication was already in her system that the reaction that she had
last fall was not from this drug because Kiera was showing NO signs of any kind of reaction. She would have shown signs earlier.
The Doctor sat in the room with us as we were still talking and what would you know... Kiera started getting red in the face, then her lips became more red. I look at her and said, "Well now she is having an reaction" the Doctor left the room to get some Benidril.
Kiera cleared up well from the pnuemoinia, but the antibiotics gave her such a rash. Then it turned into a yeast infection.
So back to the Doctors for another medication to clear that up.
Kiera just doesn't seem to catch a break!
When I came back after dinner, the Doctor said that they just gave her an IV medication for the pnuemonia. I asked what it was, he told me and I saif that Kiera has had an allergic reaction to this drugs one time last fall.
He thought that since the medication was already in her system that the reaction that she had
last fall was not from this drug because Kiera was showing NO signs of any kind of reaction. She would have shown signs earlier.
The Doctor sat in the room with us as we were still talking and what would you know... Kiera started getting red in the face, then her lips became more red. I look at her and said, "Well now she is having an reaction" the Doctor left the room to get some Benidril.
Kiera cleared up well from the pnuemoinia, but the antibiotics gave her such a rash. Then it turned into a yeast infection.
So back to the Doctors for another medication to clear that up.
Kiera just doesn't seem to catch a break!
Monday, October 13, 2008
Subscribe to:
Posts (Atom)