Kiera is doing well with the titration of the Topamax, we are going down very slowly though, slower than you would normally go off, but we definitely don't want to throw her into a tailspin.
We do have another issue going on and this is where I get so tired because with Kiera it just never seems to ever be a simple fix, and the issues are not 'normal' issues, uuuggghh!
I like to use the phrase "consistently inconsistent" that's Kiera!
So, she started Omega3 this week.
We have been dealing with some edema, more so than in the past.
Kiera has started to wear T.E.D.D socks to aid in the edema. She hates them, she has been fairly aggravated while they are on and I am thinking that they might be too small.
The other night after getting out of her stander, her afo's were taken off as well as the tedd socks, we noticed that her leg (just one of them) was puffier than her normal puffiness and that leg was cold to the touch, and also it was whiter in color.
We put her legs up and the swelling did go down, her leg warmed up again and the color came back.
She has been having, on average, 3 bm's per day so we still don't have that under control, this can also be contributing to the extra water weight.
She wears afo's and when the edema is bad she can not wear them, but that then does not help with the left foot contracture that she has that requires botox every 3 months so she can still be braced and so wearing the braced will allow her to keep using her stander. With Kiera's porous bones it is very important to keep her Bering weight as much or as long as we can.
She is already taking a medication for acne, and this medication is a diuretic, so I think that we might have to increase that medication to help with the edema.
If that does not work then we will have to get her afo's adjusted, but my thought on this is what happens if we do get the edema figured out after we had adjustments made to her afo's?
Then I was told today that Omega3 can be contributing to the loose stools, we are not sure about that but if that is whats going on with her that would be sad to me because we started her on Omega3 because there are studies out there that say that O3 is as good as carbaziphine, another seizure medication.
We started this in junction with the titration of the Topamax to maybe help keep the seizures down as we go off the topamax.
You can see how my head is spinning!
So where do you start? try a bigger pair of tedd socks? increase the diuretic? Stop the O3? get her afo's adjusted and ignore the rest?
And of course this all comes up on a Friday.
Oh and she has some eye thing going on now too.
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!
Friday, February 27, 2009
Sunday, February 22, 2009
We got through the night!
But yesterday was a bit unsettling.
Kiera received the rescue med at 8:30 am, it knocked her out.
She slept all day and finally woke up around 6:15pm.
After getting the medication her O2 dropped down to 84, we shook her to arouse her a bit so the O2 would go back up and in a few minutes it did.
She was so zonked that her O2 was hanging around 94-97, not bad but Kiera normally runs at 100%.
She felt warm to the touch, but this is something that I have seen before after giving her a rescue med.
It is 10:30am and she is still asleep.
I am thinking that the dose that she is on is too high, maybe she would do better with 2cc rather than the 4?
Oh how I hate seizures!
Kiera received the rescue med at 8:30 am, it knocked her out.
She slept all day and finally woke up around 6:15pm.
After getting the medication her O2 dropped down to 84, we shook her to arouse her a bit so the O2 would go back up and in a few minutes it did.
She was so zonked that her O2 was hanging around 94-97, not bad but Kiera normally runs at 100%.
She felt warm to the touch, but this is something that I have seen before after giving her a rescue med.
It is 10:30am and she is still asleep.
I am thinking that the dose that she is on is too high, maybe she would do better with 2cc rather than the 4?
Oh how I hate seizures!
Friday, February 20, 2009
It's been 5 days sence we started her med wean
Well so far Kiera has been doing very well seizure wise while we are titrating down from the Topamax medication.
There has been a lot of changes that we are making right now and I dont like to make more than one change at a time but sometimes it has to happen.
Kiera is on a lot of medications and the bill from the pharmacy is growing, so today we decided to look at all that she takes and try to eliminate some that might not be helping her.
We are going to stop both her allergy meds and stop the probiotics.
Right now she is not at risk for getting C-diff so I feel okay with discontiuing this and the allergy med, well time will tell.
Her Epileptologist said today that she does not want Kiera to get a second dose of the new rescue medication diazapan in-tensol. If Kiera has a seizure lasting 10 minutes, she will get the medication, if the seizure lasts 5 plus minutes longer after getting the medication, she wants 911 to be called. Also, if after getting the rescue medication, if she were to have another seizure in a 24 hour peroid, she wants us to call 911.
We will see how this goes, my thought is that she will be taking a few trips to the ER.
Kiera has been wearing a pair of T.E.D.D socks because of some idema that she has but it does not seem to be working from what I can tell, and she hates them. I also worry about her bones, it taks about 10 minutes to put theses socks on and Kiera's bones are porus, and very thin. She is at risk for fractures and I get so worried that her ankels are going to break just by putting these on. We will see if we continue to wear these.
Update 2/21
Well what would you know, Kiera had a 14 minute GTC seizure early this morning, it was while she was getting woken up to take her bath, and bamm, she started to seize, she got the rescure medication at 10 minutes then continued to seize for another 4 minutes.
The medication just knocked her out, it is a new medication so we do not know how she was going to respond to it, now we now.
If she has another seizure in the next 24 hours we are told to call 911.
did I say I hate seizures???
There has been a lot of changes that we are making right now and I dont like to make more than one change at a time but sometimes it has to happen.
Kiera is on a lot of medications and the bill from the pharmacy is growing, so today we decided to look at all that she takes and try to eliminate some that might not be helping her.
We are going to stop both her allergy meds and stop the probiotics.
Right now she is not at risk for getting C-diff so I feel okay with discontiuing this and the allergy med, well time will tell.
Her Epileptologist said today that she does not want Kiera to get a second dose of the new rescue medication diazapan in-tensol. If Kiera has a seizure lasting 10 minutes, she will get the medication, if the seizure lasts 5 plus minutes longer after getting the medication, she wants 911 to be called. Also, if after getting the rescue medication, if she were to have another seizure in a 24 hour peroid, she wants us to call 911.
We will see how this goes, my thought is that she will be taking a few trips to the ER.
Kiera has been wearing a pair of T.E.D.D socks because of some idema that she has but it does not seem to be working from what I can tell, and she hates them. I also worry about her bones, it taks about 10 minutes to put theses socks on and Kiera's bones are porus, and very thin. She is at risk for fractures and I get so worried that her ankels are going to break just by putting these on. We will see if we continue to wear these.
Update 2/21
Well what would you know, Kiera had a 14 minute GTC seizure early this morning, it was while she was getting woken up to take her bath, and bamm, she started to seize, she got the rescure medication at 10 minutes then continued to seize for another 4 minutes.
The medication just knocked her out, it is a new medication so we do not know how she was going to respond to it, now we now.
If she has another seizure in the next 24 hours we are told to call 911.
did I say I hate seizures???
Tuesday, February 10, 2009
We are going to start the Topamax ween!
After the prolonged seizures a few weeks ago, I thought for sure Kiera's Epileptologist was not going to give us the go-ahead to start the ween, but Kiera has been doing very well seizure wise over the last few weeks so it is a go!
We will start next Monday and do the ween very slowly.
Kiera may also start Omega3 supplement which I am very excited about because there are a few studies out, one from MN, that talks about this as being just as good as Carbaziphine.
It has so many other benefits too. The one thing that I do worry about is that it can help with lowering blood pressure, that is one side affect we don't need. Kiera's blood pressure runs very low so that might be the deal breaker if its too much of a risk.
wish us tons of luck as we go through this titration!
We also found out that Kiera's curve on her spine has not gotten worse sense 6 months ago and we are very happy about that, we are hoping to put off back surgery as long as we can and maybe even never do it.
She is now a proud new owner of a pair of T.E.D.D sock which she does not like. I hope that it will help with the edema but I am very concerned about her brittle bones as they are being put on, it takes a good 7 -10 minutes to get them on correctly and safely, Kiera goes through so much I really hate to add things that bother her. Maybe she will get used to them, I guess time will tell.
She is scheduled to get Botox in her jaw muscles to help to stop her teeth grinding, she has worn her back teeth down so far that they are flat and smooth. I have never heard of this before but I guess it can be very helpful for some people. Her Dentist says that he has referred many children for this very same reason, so we will see what this will all entail, if it sounds too horrible then we will not go through with it.
It seems to always be a wild roller coaster ride, you never know how the next day is going to go and what is around the corner.
We will start next Monday and do the ween very slowly.
Kiera may also start Omega3 supplement which I am very excited about because there are a few studies out, one from MN, that talks about this as being just as good as Carbaziphine.
It has so many other benefits too. The one thing that I do worry about is that it can help with lowering blood pressure, that is one side affect we don't need. Kiera's blood pressure runs very low so that might be the deal breaker if its too much of a risk.
wish us tons of luck as we go through this titration!
We also found out that Kiera's curve on her spine has not gotten worse sense 6 months ago and we are very happy about that, we are hoping to put off back surgery as long as we can and maybe even never do it.
She is now a proud new owner of a pair of T.E.D.D sock which she does not like. I hope that it will help with the edema but I am very concerned about her brittle bones as they are being put on, it takes a good 7 -10 minutes to get them on correctly and safely, Kiera goes through so much I really hate to add things that bother her. Maybe she will get used to them, I guess time will tell.
She is scheduled to get Botox in her jaw muscles to help to stop her teeth grinding, she has worn her back teeth down so far that they are flat and smooth. I have never heard of this before but I guess it can be very helpful for some people. Her Dentist says that he has referred many children for this very same reason, so we will see what this will all entail, if it sounds too horrible then we will not go through with it.
It seems to always be a wild roller coaster ride, you never know how the next day is going to go and what is around the corner.
Thursday, January 22, 2009
It seems like I keep posting the same story :(
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.
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.
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?
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