I mentioned that Gracie was having seizure on Friday nights and she switched to Monday nights!
Grace had a 30 minute seizure last night. This was the first prolonged seizure since January 29th. The frequency of the seizures has picked up but with few exceptions, the duration of the seizures is down. Last night was an exception. Her medication levels are at the right place. She is right where they want her to be on the meds. THat is no longer the cause of the increased seizure frequency. Now we need to try to figure out what else could be causing the increase in seizures.
Tom and I are thinking that it may have to do with her diet. Grace is on a lower ration of fat to protein and carbohydrate that most people on the ketogenic diet. Grace is about 2 to 1; whereas the standard starting point is 4 to 1. We are wondering if it is time to re-tune her diet and get more restrictive again. At least maybe if we let her continue to eat unlimited protein, we may need to give her more fat to compensate.
As a result, her breakfast this morning was chicken kiev (a chicken breast drenched in butter) and fried egg with cheese. She also had her juice (keto-koolaid) with a helping of heavy cream mixed in. This is actually very delicious. Her juice is orange flavored and it ends up tasking like an orange creamsicle - at least to us!
Tuesday, April 13, 2010
Friday, March 26, 2010
What is it about Friday nights?
Gracie seems to be having seizures routinely on Friday nights now. For a while it was every other Friday night and now we seem to have slid into weekly. Somewhere about 8:00 PM - give or take, she has a seizure.
We have tried giving her meds a bit earlier, no change. She has had three of the seizures at the Friday night session of gymnastics. However, she has had many more away from gymnastics. We have tried to think through many of the possible scenarios and get ahead of this but we are just running out of ideas - good ones anyhow!
It is getting harder to watch her have seizures now when I know that regardless of how small, they are taking something from her. The more of these there are, those little backward steps start to add up.
I have been in touch with her doctor and I am waiting to hear back. About 18 months ago, we looked into a drug called steripinitol. This drug is used in conjunction with her Depakte and has had great results with kids with SMEI (Severe Myclonic Epilipsy of Infancy)/Dravet's Syndrome. However, at the time, Gracie was not a good candidate for this drug as it works with the Depakote to raise the levels of it in her blood. She was already at near-toxic levels at that point so the medicine would not really help her. I am hoping that since her situation is the reverse now that this drug may be helpful to her. I have yet to hear of anyone using this drug and the ketogenic diet. The drug is still not cleared for sale in the US. We would have to have the hospital order if from Canada for us.
Thanks for checking in. Please hold Gracie in your prayers. She can use every little bit of help she can get these days!
Marie
We have tried giving her meds a bit earlier, no change. She has had three of the seizures at the Friday night session of gymnastics. However, she has had many more away from gymnastics. We have tried to think through many of the possible scenarios and get ahead of this but we are just running out of ideas - good ones anyhow!
It is getting harder to watch her have seizures now when I know that regardless of how small, they are taking something from her. The more of these there are, those little backward steps start to add up.
I have been in touch with her doctor and I am waiting to hear back. About 18 months ago, we looked into a drug called steripinitol. This drug is used in conjunction with her Depakte and has had great results with kids with SMEI (Severe Myclonic Epilipsy of Infancy)/Dravet's Syndrome. However, at the time, Gracie was not a good candidate for this drug as it works with the Depakote to raise the levels of it in her blood. She was already at near-toxic levels at that point so the medicine would not really help her. I am hoping that since her situation is the reverse now that this drug may be helpful to her. I have yet to hear of anyone using this drug and the ketogenic diet. The drug is still not cleared for sale in the US. We would have to have the hospital order if from Canada for us.
Thanks for checking in. Please hold Gracie in your prayers. She can use every little bit of help she can get these days!
Marie
Tuesday, March 23, 2010
Evaluation Update
At Grace's three year old physical, I discussed with her pediatrician where she was in comparison to the three-year old milestones. Grace was fairly close and we had trouble determining if the things that Grace did not do well were a lack of ability or interest. I discussed this with her day care teachers at the time as well. I guess the general feeling was that she might be starting to lag behind a bit so we should have her evaluated at the Intermediate Unit (the kindergarten/school readiness program for children ages 3 to 5). I submitted the paperwork and learned that the first step in the process is a screening. Depending on the results from the screening, she would or would not be referred for an evaluation. Then if there was a full evaluation, the result of that would determine if she required therapies or services or not.
We did Grace's initial screening in April 2009. At that time, Grace's raw score fell below where it should be but the woman conducting the screening felt that the score did not truely reflect where Grace was at. The school phychologist was called in to give her opinion. Grace's evaluation was scheduled just a few weeks after she was in the hospital in spetic shock so there was some concern that her recent illness was negatively influencing her score. Coupled with the fact that Grace did not do as instructed but gave her own version of the response which was scored as incorrect. For example, there was an exercies to see how she did making all of the sounds, she was given sentences to repeat so they could check how she did making specific sounds. Grace repeated the sentences paraphrasing and leaving out the sounds/words they were testing for but essentially repeating the meaning of what she was asked to repeat. We all agreed that maybe it was best to give her 6 more months and do another screening at that time.
Well, I didn't call to reschedule her until November instead of October and then when she was finally scheduled to go back in, she was in the hospital. When I called to reschedule, they decided that they would skip the screening (since she basically already failed it!) and just go for the evaluation. I finally got that scheduled for February 1, 2010.
The evaluation process was very well organized and amazing to watch. Grace just 'played' with all of the folks evaluating her and never once seemed ill at ease. The team were obviously quite skilled. She had a school phsycologist, a speech therapist, and occupational therapist and a physical therapist participate in the evaluation process. When I rescheduled the screening, I listed concerns in cognative abilities and speech. However, when I first submitted it, I had listed her motor skills as a concern - both fine motor skills and gross motor skills. Since they were still going off the first screening, they evaluated her for all of it.
It took a lot longer than I expected to get the results back from the evaluation. Basically, when I called to find out when to expect to hear back, I was scheduled for an IEP (Individualized Education Plan). I made the comment that I guessed that meant she was recommended for some services. The scheduler only confirmed that and said it would all be reviewed with us.
Her speech which was of a concern to us, was slightly behind where it should be but not enough to warrent speech therapies. However, they did give us strategies to help her with some little things. Her cognative abilites are behind where they should be and she was recommended for services for that. Her fine and gross motor skills were very much behind. Her adaptive skills (dressing herself and feeding herself) were on target. And her social skills were well above average. I guess I was right on when I speculated that she is covering up for her gaps by being cute and charming! Anyhow, she will receive three therapy sessions a week - one for cognative skills, physical therapy and occupational therapy for her motor skills.
The best part of her therapies is that she recieves them right at her day care. She is in an environment where she is safe and comfortable and surrounded by all things familiar. The IU has a classroom in the daycare to work with the kids requiring therapies. So Grace gets to go from one classroom to the other and they therapists send us notes home and show her regular day care teachers what they can do to help her work on her needed skills. This is just one more reason why we love our day care :-)
I was somewhat upset by the results. Not that she needs services (that she is getting them I am glad) but more that the seizures have taken so much from her. When Grace was 18 months old, she was one of the best talkers in her group. She was tiny but she kept up with all of the kids. I liked being naive about the damage the seizures were doing to her. Now my eyes are opened. We have to fight for control of these seizures and be as vigilant as we can possibly be. We also need to keep working with her to try to help her catch up to where she should be. Afterall, she is scheduled to start kindergarten in September 2011!
We did Grace's initial screening in April 2009. At that time, Grace's raw score fell below where it should be but the woman conducting the screening felt that the score did not truely reflect where Grace was at. The school phychologist was called in to give her opinion. Grace's evaluation was scheduled just a few weeks after she was in the hospital in spetic shock so there was some concern that her recent illness was negatively influencing her score. Coupled with the fact that Grace did not do as instructed but gave her own version of the response which was scored as incorrect. For example, there was an exercies to see how she did making all of the sounds, she was given sentences to repeat so they could check how she did making specific sounds. Grace repeated the sentences paraphrasing and leaving out the sounds/words they were testing for but essentially repeating the meaning of what she was asked to repeat. We all agreed that maybe it was best to give her 6 more months and do another screening at that time.
Well, I didn't call to reschedule her until November instead of October and then when she was finally scheduled to go back in, she was in the hospital. When I called to reschedule, they decided that they would skip the screening (since she basically already failed it!) and just go for the evaluation. I finally got that scheduled for February 1, 2010.
The evaluation process was very well organized and amazing to watch. Grace just 'played' with all of the folks evaluating her and never once seemed ill at ease. The team were obviously quite skilled. She had a school phsycologist, a speech therapist, and occupational therapist and a physical therapist participate in the evaluation process. When I rescheduled the screening, I listed concerns in cognative abilities and speech. However, when I first submitted it, I had listed her motor skills as a concern - both fine motor skills and gross motor skills. Since they were still going off the first screening, they evaluated her for all of it.
It took a lot longer than I expected to get the results back from the evaluation. Basically, when I called to find out when to expect to hear back, I was scheduled for an IEP (Individualized Education Plan). I made the comment that I guessed that meant she was recommended for some services. The scheduler only confirmed that and said it would all be reviewed with us.
Her speech which was of a concern to us, was slightly behind where it should be but not enough to warrent speech therapies. However, they did give us strategies to help her with some little things. Her cognative abilites are behind where they should be and she was recommended for services for that. Her fine and gross motor skills were very much behind. Her adaptive skills (dressing herself and feeding herself) were on target. And her social skills were well above average. I guess I was right on when I speculated that she is covering up for her gaps by being cute and charming! Anyhow, she will receive three therapy sessions a week - one for cognative skills, physical therapy and occupational therapy for her motor skills.
The best part of her therapies is that she recieves them right at her day care. She is in an environment where she is safe and comfortable and surrounded by all things familiar. The IU has a classroom in the daycare to work with the kids requiring therapies. So Grace gets to go from one classroom to the other and they therapists send us notes home and show her regular day care teachers what they can do to help her work on her needed skills. This is just one more reason why we love our day care :-)
I was somewhat upset by the results. Not that she needs services (that she is getting them I am glad) but more that the seizures have taken so much from her. When Grace was 18 months old, she was one of the best talkers in her group. She was tiny but she kept up with all of the kids. I liked being naive about the damage the seizures were doing to her. Now my eyes are opened. We have to fight for control of these seizures and be as vigilant as we can possibly be. We also need to keep working with her to try to help her catch up to where she should be. Afterall, she is scheduled to start kindergarten in September 2011!
Sunday, March 21, 2010
Keto 'Happy Meal'
Fried pork rinds - I will readily admit to an aversion to this food. I don't think it ever appealed to me. I could not believe my eyes, when last summer, on a trip down south, Tom came out of a gas station convenience store with a few bags of fried pork rinds - and he was excited about it. I imagine my curled lip and sneer very clearly gave away my opinion on the food. However, Tom said the one thing that was guaranteed to change my mind - there are no carbs in them!
Fried pork rinds are all protein and fat and not a single carbohydrate. This makes them great ketogenic diet food. Tom had several flavors so he could try them with Gracie and see if she liked them. She was absolutely thrilled when he handed her a bag of 'chips' that looked like potato chips and actually said she could have some. I think the idea of her own 'chips' appealed to her for a bit but them she realized that they just were not potato chips! It takes Gracie about two weeks to tire of a new food and that was what happened to the fried pork rinds.
However, our imaginations were then fired up about them. We now use them as the basis for keto-bread crumbs. We crumble some non-flavored fried pork rinds and then blend in some parmesean cheese, onion powder, garlic powder, salt, pepper and any combination therein. We use these breadcrumbs the same as any other. We dip bits of chicken into an egg and coat with the keto-bread crumbs and then fry them up. Voila, chicken nuggets that are carb-free! We mix that with some eggplant french fries and we have a keto-happy meal and a happy keto-child.
The eggplant fries are very good. We take a regular eggplant and cut it into pieces resembling shoestring french fries. This gets fried up in oil - either a mix of canola and peanut or olive oil. The eggplant picks up the flavor of the oil - just as french fries do.
Once a month in Gracie's day care class, they have a Chick-fil-A lunch. Basically, it's the Chick-fil-A kids meal. Gracie used to love this. She also likes to be like all of the other kids. We knew about the eggplant french fries before but we just recently started pairing them with the keto-chicken nuggets. Gracie is content that she is getting the same meal that everyone else is eating!
Fried pork rinds are all protein and fat and not a single carbohydrate. This makes them great ketogenic diet food. Tom had several flavors so he could try them with Gracie and see if she liked them. She was absolutely thrilled when he handed her a bag of 'chips' that looked like potato chips and actually said she could have some. I think the idea of her own 'chips' appealed to her for a bit but them she realized that they just were not potato chips! It takes Gracie about two weeks to tire of a new food and that was what happened to the fried pork rinds.
However, our imaginations were then fired up about them. We now use them as the basis for keto-bread crumbs. We crumble some non-flavored fried pork rinds and then blend in some parmesean cheese, onion powder, garlic powder, salt, pepper and any combination therein. We use these breadcrumbs the same as any other. We dip bits of chicken into an egg and coat with the keto-bread crumbs and then fry them up. Voila, chicken nuggets that are carb-free! We mix that with some eggplant french fries and we have a keto-happy meal and a happy keto-child.
The eggplant fries are very good. We take a regular eggplant and cut it into pieces resembling shoestring french fries. This gets fried up in oil - either a mix of canola and peanut or olive oil. The eggplant picks up the flavor of the oil - just as french fries do.
Once a month in Gracie's day care class, they have a Chick-fil-A lunch. Basically, it's the Chick-fil-A kids meal. Gracie used to love this. She also likes to be like all of the other kids. We knew about the eggplant french fries before but we just recently started pairing them with the keto-chicken nuggets. Gracie is content that she is getting the same meal that everyone else is eating!
Sunday, March 14, 2010
It's been a while...
I have not posted here in quite some time. That leaves me wondering where to begin again. Here goes....
Gracie has had an increase in seizure activity since the start of the year. Her medication levels had dropped and one medicine (the Depakote) was increased the end of January. Her levels were still not to where they need to be and the seizures continued. Just this past week, both of her medications were increased (Depakote and Keppra). Hopefully, this will help Gracie get some control over her seizures.
The medication changes also seem to be helping with the headaches. Gracie has been complaining of headcahes on and off but much more frequently of late. We were told that the headaches are a bit of a warning that her medication levels have dropped. One of the side effects of Depakote is that is helps with headaches. Since she is so used to it, it seems that when there is not enough of it in her system, she gets headaches. She can now clearly communicate when she has a headache so hopefully, this will help us to know when her level need to be adjusted in the future.
Grace managed to put on some weight. She is up to 32 and a half pounds! It is great to see her making some strides in this as she has continued to grow. It is most likely a combination of her gaining a bit of weight and having been sick earlier that impacted her metabolism and how she is processing her medications. We are hopeful that this latest adjustment will last her for a while.
I'll try to post soon with some updates from her evaluations.
Gracie has had an increase in seizure activity since the start of the year. Her medication levels had dropped and one medicine (the Depakote) was increased the end of January. Her levels were still not to where they need to be and the seizures continued. Just this past week, both of her medications were increased (Depakote and Keppra). Hopefully, this will help Gracie get some control over her seizures.
The medication changes also seem to be helping with the headaches. Gracie has been complaining of headcahes on and off but much more frequently of late. We were told that the headaches are a bit of a warning that her medication levels have dropped. One of the side effects of Depakote is that is helps with headaches. Since she is so used to it, it seems that when there is not enough of it in her system, she gets headaches. She can now clearly communicate when she has a headache so hopefully, this will help us to know when her level need to be adjusted in the future.
Grace managed to put on some weight. She is up to 32 and a half pounds! It is great to see her making some strides in this as she has continued to grow. It is most likely a combination of her gaining a bit of weight and having been sick earlier that impacted her metabolism and how she is processing her medications. We are hopeful that this latest adjustment will last her for a while.
I'll try to post soon with some updates from her evaluations.
Saturday, January 30, 2010
Almost a New Month
Things seem to be getting worse for Gracie this month in terms of seizures. Pretty much since she started the ketogenic diet, all of her seizures have been explained. Basically, they had an explanable cause such as an active illness or the onset of an illness. All until this month.
She has another seizure last night - this is the third presumably un-provoked seizure this month. The seizure lasted 25+ minutes. She was taken to the ER via ambulance. While there, she started seizing again and it lasted about 5 to 7 minutes. She had blood drawn in between seizures.
Imagine our surprise when her Depakote level (Valproic Acid) came in at 43. Her theraputic dose is between 100 and 120. She has been as high as 150 before. But never this low. The last time she was seizing out of control like this, her Depakote level was in the 80's.
They gave Gracie an IV form of the medicine to bring up her level. Unfortunately, this caused her blood pressure to tank and her heart rate to go up. Fortunately she was holding her oxygen levels on her own or I would have been in a full-blown panic. This reminded me of when she went into septic shock. Thankfully, this was not a repeat of that episode!
She got transferred to CHOP when they did a full work up on her as well. By then, all of the Valium and Adavant given to stop the seizures were starting to wear off and the effect of the IV Depakote was wearing off so her blood-pressure stabilized. She was given the all-clear and sent home a mere three hours after arriving at CHOP! When Grace recovers, she rebounds quickly.
We have instructions to up her Depakote and to add an additional sedative for the next few days to cover her while her blood levels rebound. I am hoping that by the time the calendar page turns to a new month, that we will be stable again and working on the next one hundred day span of no seizures.
She has another seizure last night - this is the third presumably un-provoked seizure this month. The seizure lasted 25+ minutes. She was taken to the ER via ambulance. While there, she started seizing again and it lasted about 5 to 7 minutes. She had blood drawn in between seizures.
Imagine our surprise when her Depakote level (Valproic Acid) came in at 43. Her theraputic dose is between 100 and 120. She has been as high as 150 before. But never this low. The last time she was seizing out of control like this, her Depakote level was in the 80's.
They gave Gracie an IV form of the medicine to bring up her level. Unfortunately, this caused her blood pressure to tank and her heart rate to go up. Fortunately she was holding her oxygen levels on her own or I would have been in a full-blown panic. This reminded me of when she went into septic shock. Thankfully, this was not a repeat of that episode!
She got transferred to CHOP when they did a full work up on her as well. By then, all of the Valium and Adavant given to stop the seizures were starting to wear off and the effect of the IV Depakote was wearing off so her blood-pressure stabilized. She was given the all-clear and sent home a mere three hours after arriving at CHOP! When Grace recovers, she rebounds quickly.
We have instructions to up her Depakote and to add an additional sedative for the next few days to cover her while her blood levels rebound. I am hoping that by the time the calendar page turns to a new month, that we will be stable again and working on the next one hundred day span of no seizures.
Wednesday, January 13, 2010
One Year Anniversary
Today marks one year since Gracie began this journey known as the ketogenic diet. Wow.
When we first started this diet, I wasn't sure we could last one week, and one month seemed like a long shot. Here we are one year in and it was no where near as bad as I feared it would be at the start. We are at a manageable point with the diet. The benefits are still there.
First and foremost, Gracie has had far fewer seizures in this past year than in prior years. She went six months seizure free and that had not happened at any point prior. The seizures she has had have been much shorter in duration than in prior years. She has much better balance, speech articulation, social interaction and language skills than she did a year ago.
The pictures keep loading out of order. I'm just going with this order - sorry! The first picture is last June when Grace was refusing to eat. The second picture is Grace on her third birthday (January 2009). The third one is from her fourth birthday (January 2010). There is not much difference from one birthday to the next - she regainged the weight she lost last summer.
Sunday, January 10, 2010
Too Much Information?
Is there such a thing as too much information? Maybe! Grace went for her ketogenic diet blood work last week. The lab sent a 'courtesy' copy of the results to the house. Of couse I opened it and reviewed them. There were a lot of out og range results. So I looked all of the tests up on the internet.
Of course, what I saw on the internet freaked me out. By the time I actually sent an e-mail off ot the neurologist and the keto team, I was in a full-blown panic. I was starting to make a list of all of the things I would need to pack for a stay in the hospital - as I was certain that all of this meant she was very ill.
Gracie's neurologist and the whole team are wondeerful (I'm sure I mentioned that before!). I have two responses back within 30 minutes - one from the doctor and one from the nurse practitioner. The nurse practitioner replied that everything was fine - nothing to worry about. If the vitimin D levels stay low, we may need to add a supplement. The neurologist replied with a much longer e-mail - explaining what the test could indicate (addressing the fears of what I read on the internet) and how those were ruled out for Grace. Many of the results were where they want her to be given the diet she is on. And he ended with 'nothing to worry about'!
I realized somehwere mid-panic that this was the first time the lab sent us a courtesy copy of her results. Interestingly enough, Tom had lab work done the same day at the same lab and there were no courtesy results for him. The fleeting thought crossed my mind that these results may be exactly what she is getting each time she is tested - I am only seeing them unfilted this time. Of course, that thought just flitted through my head and I went back into full panic - until everyone replied - nothing to worry about.
Of course, what I saw on the internet freaked me out. By the time I actually sent an e-mail off ot the neurologist and the keto team, I was in a full-blown panic. I was starting to make a list of all of the things I would need to pack for a stay in the hospital - as I was certain that all of this meant she was very ill.
Gracie's neurologist and the whole team are wondeerful (I'm sure I mentioned that before!). I have two responses back within 30 minutes - one from the doctor and one from the nurse practitioner. The nurse practitioner replied that everything was fine - nothing to worry about. If the vitimin D levels stay low, we may need to add a supplement. The neurologist replied with a much longer e-mail - explaining what the test could indicate (addressing the fears of what I read on the internet) and how those were ruled out for Grace. Many of the results were where they want her to be given the diet she is on. And he ended with 'nothing to worry about'!
I realized somehwere mid-panic that this was the first time the lab sent us a courtesy copy of her results. Interestingly enough, Tom had lab work done the same day at the same lab and there were no courtesy results for him. The fleeting thought crossed my mind that these results may be exactly what she is getting each time she is tested - I am only seeing them unfilted this time. Of course, that thought just flitted through my head and I went back into full panic - until everyone replied - nothing to worry about.
Tuesday, January 05, 2010
Happy Birthday Gracie
Today is Gracie's 4th birthday. She is very excited about it. We had a birthday dessert and candles and presents with some family on Sunday. The pictures are from that.
The birthday dessert was something Tom whipped up that morning using heavy cream, cream cheese, Splenda and vanilla extract flavor. It tasted a bit like cake batter. The key was that everyone had a spoonful of the same thing! It also helped that it had enough consistency to support the candles!
I didn't get to posting all though the past month. Everyone has been relatively healthy, we have just been busy! Thanks for checking in on us.
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