A quick update before I get into yesterday and today:
Over the last couple of weeks since my last post we have been busy changing the Ketogenic Diet ratio, weaning off Trileptal and working more than ever on physical therapy while trying to maintain a balance of stress-free fun! Bug was on the new diet ratio of 3.5:1 for 1 week and she was still having headdrops and spasm seizures throughout the day. About 3 headdrops a day and 3-5 spasms per day. We called the dietitian at Cook Children's Hospital and spoke with her neuro, both told us that Dr. Hernandez, Bug's epileptologist, recommended trying the new ratio for one more week to give it more time for the fat to process into ketones. Well, that seemed to help a little because her ketone levels finally made appearances on the highest mark level. For the previous 3 weeks they were mostly on the second-to-highest ketone level which is good but not ideal. This week we've also seen the headdrops go down drastically, some days she doesn't have any and yesterday she had only one. Spasm seizures have also gone down from 3-5 per day to 1-2 per day.
Now to more recent news. Michael called Rayleigh's neuro on Monday because she was having a really hard time falling asleep at night. Some nights would be after midnight, a couple of nights were past 2 am. She would get comfortable and start to close her eyes but then jerk awake or reposition or just fuss and fight it. It was as if there was too much brain activity for her body and brain to fully relax and fall asleep. So, Dr. Coleman prescribed Clonodine. She takes a 1/2 pill of a .1mg each night. So far, that's been helping her fall asleep by midnight which is good.
Tuesday night a couple of hours after dinner, shortly before bedtime, Bug threw up. Well, at first it was a little vomit-burp but then she gagged again and then she full on threw up everything she ate for dinner. She fussed for a little bit afterward like most people do but then she seemed fine.
BUT, Wednesday she woke up at 6:20a and for a little bit we just snuggled and hung out trying to fall back asleep but then around 7a she began full on crying. She kept trying to chew on her fingers (getting 2 yr molars) and she let out a couple of poots so I gave her some Mylicon and some Advil and she fell asleep around 8:30 for 30-40 mins.
She threw up right after breakfast but it wasn't a whole lot, certainly not her whole breakfast. Right after vomiting she acted fine and normal so we went on with our day. At that point I just figured it was a little leftover upset tummy from the night before, maybe dinner didn't settle or something.
Then around lunch she started acting fussy again so we skipped lunch and just had a yogurt snack instead. Michael and I thought that maybe the high ratio of the diet wasn't being well-tolerated by her body so we'd give her a little break to digest it and we noticed that she really had not been drinking well the last couple of days, just a little with medicine and that would be all she'd take. So we gave her some water before her nap and all seemed well.
After her nap she threw up again. She was still acting fine after she'd throw up so we pushed more fluids and then she threw up again so Michael immediately called the on-call neuro to see if this was normal for the diet.
**Flashback to Ketogenic Diet beginning days in the hospital: Bug threw up when she was on 3:1 ratio so we lowered it to 2.5:1 ratio and let her body build up to 3:1**
He spoke to the on-call nurse who is familiar with the Keto Diet. She said that being dehydrated is pretty common with any diet ratio increase so we should really push fluids and try and get her to drink 1-2 ounces every hour and suggested using a syringe to force fluids if she wouldn't drink (luckily it didn't come to that last night). She downed 2 ounces in one sitting but then vomited it right back up so we went a little slower and she did really well so she was allowed to have a snack before bed.
This morning she woke up at 6am. Not fussy, just awake and happy and drinking her water a little at a time so we turned on the light and I planned to stay awake with her for a good hour or 2 and was hoping she'd go back to sleep for a mini nap before physical therapy that morning at 10:30. That never happened because at 7am she vomited again. Big time. I called Michael, then called the on-call nurse back and decided to take her to the ER so they could run some tests and do an iv for fluids if necessary.
Luckily Michael's sister is a nurse at the ER and we were able to get Bug straight in and then Susie arrived (we have a wonderful support system). Bug did not have a fever so they proceeded to run some tests.
She had an x-ray to see her bowels - they were looking to see if she was overly constipated or backed up, causing the vomiting. Showed up normal, no constipation.
She had a urine test to check for bacteria like a bladder infection and to check her ketone levels. No bladder infection. Ketone levels were 80, high but not highest level.
neuro and they decided to run a blood panel to check her ketone levels that way also and to check her level of dehydration.
Then she got some fluids via iv.
The blood work came back and the doctor told us that the ketone levels are really high and this type of nausea is common with such high ketones so they prescribed a nausea-settling medicine that she can take every day, every 4 hours as needed to help her tummy settle while her body adjusts to the high ketones.
Her neuro wants to keep her on the 3.5:1 ratio for now because despite the vomiting she is having increased seizure control on this ratio vs. the 3:1 ratio. We see him tomorrow for a check-up visit so we have a list of questions as usual and I'll post shortly after the appointment.
Bug in Air
Showing posts with label trileptal. Show all posts
Showing posts with label trileptal. Show all posts
Thursday, January 5, 2012
Thursday, December 15, 2011
Sometimes You Don't Want Your Gut Feeling to Be True
As you can tell by the title of this post, I am not in the lightest of moods tonight. Bug had her checkup with the neuro today. We went in with 2 pages of questions to ask about Bug's behavior and things we've noticed. We got a lot of answers and here's pretty much the gist of it.
Rayleigh has nystagmus. It's an eye condition, not necessarily a brain condition. Simply put, nystagmus is when the eyes shake. In Rayleigh's case, her eyes only shake occasionally and not constantly. They shake side to side when she looks far to her left or right and I've also seen them rotate back and forth slightly when focusing. Her neuro said that based on what we know about Rayleigh and that she hasn't always had nystagmus that her condition was probably brought on by her seizure control medicines. Nystagmus as a result of seizure control medicine is most commonly attributed to Phenobarbital but can be a side effect of many seizure control medicines including Clobazam which Bug has been on for over a year now.
If Bug's nystagmus is a result of medication she will have the condition for as long as she is on the medication but on that same note, if it is the medicine causing the nystagmus then it will go away if/when she is off that medicine. We are making an appointment with Bug's neuro-opthomologist to find out more about nystagmus.
While we were talking with the neuro about this, Bug did her head drop. The neuro asked if this was the same type of head drop we had shown him on video back in October and we said yes. He then told us that it looked like a seizure and she did the head drop 2 more times in that 2 minute period. The neuro asked questions like when she does them (mostly when she's sleepy but also randomly rarely), how she reacts after a drop (like nothing happened, but sometimes a big head drop takes her a few seconds to recover and "come to") and then I told the neuro about this new thing that Rayleigh as been doing this week. When she's awake she will start smacking her lips, arms will go out slightly and then come back in and eyes blink.
He then confirmed (not 100% without EEG but pretty much) that we are describing myoclonic-astatic seizures.
The "head drops" are a drop seizure.
When she has the myoclonic-astatic seizure followed by a small head drop in the way that Bug does it is similar to last year when she would have a partial seizure that was followed by myoclonic jerks.
So what we thought was 12 weeks of seizure freedom was really just 12 weeks of partial onset seizure freedom.
There are 2 types of medicine that Rayleigh has not tried before that are used to control myoclonic-astatic seizures: Lamictal and Depakote. It could cause more seizures if we start one of these new medicines along with her existing medicines while on the diet. Plus, these both seem to have nasty side effects that are increased in children under 2 years old. But we know what's next to take if we have to get there.
The current plan is this: We have already increased her dose of Trileptal back up to 1/2 pill morning and 1 full pill at night along with the 1 pill of Clobazam 3 times a day. We can go up higher on the Trileptal if we need to. We will also be upping the ratio on her diet which has shown a lot of success in many cases.
The neuro says that there are several explanations for why Bug's seizures went from ONLY happening during sleep to completing changing form and happening awake. The most likely reason being that her brain is maturing as she grows older. The least likely reason being the diet.
The only good thing to take away from knowing that these have been seizures is that they do not physically hurt her or affect her mood. I do still believe that they are hindering her development though :(
The neuro is ordering an EEG with an immediate visit with him right after it's done to discuss results so I'll repost after that. It should be within the next 2 weeks. Until then, we will love our Bug just the same and enjoy Christmas with her!
Rayleigh has nystagmus. It's an eye condition, not necessarily a brain condition. Simply put, nystagmus is when the eyes shake. In Rayleigh's case, her eyes only shake occasionally and not constantly. They shake side to side when she looks far to her left or right and I've also seen them rotate back and forth slightly when focusing. Her neuro said that based on what we know about Rayleigh and that she hasn't always had nystagmus that her condition was probably brought on by her seizure control medicines. Nystagmus as a result of seizure control medicine is most commonly attributed to Phenobarbital but can be a side effect of many seizure control medicines including Clobazam which Bug has been on for over a year now.
If Bug's nystagmus is a result of medication she will have the condition for as long as she is on the medication but on that same note, if it is the medicine causing the nystagmus then it will go away if/when she is off that medicine. We are making an appointment with Bug's neuro-opthomologist to find out more about nystagmus.
While we were talking with the neuro about this, Bug did her head drop. The neuro asked if this was the same type of head drop we had shown him on video back in October and we said yes. He then told us that it looked like a seizure and she did the head drop 2 more times in that 2 minute period. The neuro asked questions like when she does them (mostly when she's sleepy but also randomly rarely), how she reacts after a drop (like nothing happened, but sometimes a big head drop takes her a few seconds to recover and "come to") and then I told the neuro about this new thing that Rayleigh as been doing this week. When she's awake she will start smacking her lips, arms will go out slightly and then come back in and eyes blink.
He then confirmed (not 100% without EEG but pretty much) that we are describing myoclonic-astatic seizures.
The "head drops" are a drop seizure.
When she has the myoclonic-astatic seizure followed by a small head drop in the way that Bug does it is similar to last year when she would have a partial seizure that was followed by myoclonic jerks.
So what we thought was 12 weeks of seizure freedom was really just 12 weeks of partial onset seizure freedom.
There are 2 types of medicine that Rayleigh has not tried before that are used to control myoclonic-astatic seizures: Lamictal and Depakote. It could cause more seizures if we start one of these new medicines along with her existing medicines while on the diet. Plus, these both seem to have nasty side effects that are increased in children under 2 years old. But we know what's next to take if we have to get there.
The current plan is this: We have already increased her dose of Trileptal back up to 1/2 pill morning and 1 full pill at night along with the 1 pill of Clobazam 3 times a day. We can go up higher on the Trileptal if we need to. We will also be upping the ratio on her diet which has shown a lot of success in many cases.
The neuro says that there are several explanations for why Bug's seizures went from ONLY happening during sleep to completing changing form and happening awake. The most likely reason being that her brain is maturing as she grows older. The least likely reason being the diet.
The only good thing to take away from knowing that these have been seizures is that they do not physically hurt her or affect her mood. I do still believe that they are hindering her development though :(
The neuro is ordering an EEG with an immediate visit with him right after it's done to discuss results so I'll repost after that. It should be within the next 2 weeks. Until then, we will love our Bug just the same and enjoy Christmas with her!
Wednesday, December 14, 2011
So Many Thoughts
It's the Christmas season once again. Such a beautiful time of year here in Oklahoma! I love the cool crisp air outside and the giving feeling and the bright lights on the houses at night! I'm hoping Bug is enjoying it as much as me. This weekend we're taking her to the light shows around town, that was one of her favorite activities last year! They're easy for her to see and the Christmas music you tune to in the car is upbeat and she sits on my lap while Michael drives through the park :)
This Christmas we feel like we've already received a gift that is better than anything Santa could bring down the chimney - Rayleigh is 12 weeks seizure free!!
We've also been weaning her Trileptal down by 1/2 pill every 4 weeks so we are currently down to 1/2 pill twice a day! She has so much more energy now! I knew we'd see some good things after getting medicine out of her system but I had no idea how drastic her energy level would change!
While those things are really really awesome I have to say that going into Bug's neuro appt tomorrow Michael and I have a ton of questions! Bug is still doing her head drops that her neuro previously told us he doesn't believe they are seizure activity but because she's still doing them occasionally when she's sleepy I want to know more about them.
She's also recently started waking up startled about 10 minutes after falling asleep. What I mean is, she falls asleep and everything is calm and fine and then she pops her eyes open and looks straight up and arms slightly go out for about 2 seconds and then she relaxes, looks around and sucks on her pacifier and then goes back to sleep shortly after.
I'm also pretty concerned that her development isn't improving any faster than it was before seizure freedom.
I just feel sometimes like as soon as we figure something out a whole new issue feels our mind.
I'll repost soon after her visit with the neuro Thursday.
Monday, November 21, 2011
Better and Better
Rayleigh is doing terrific!!! I don't know what else to say about it!
She is 9 weeks seizure-free!!!
9 weeks in a row of no seizures! It's still unbelievable to Michael and me. She went from at least one seizure every single day to 9 weeks straight seizure-free!
I'm not going to lie, it's not like she's going through some overnight change and suddenly she's sitting, talking and all that. She's still behind developmentally but without the seizures making it worse she stands a really good chance of catching up. Now every physical therapy session sticks with her and she's making small improvements every day! The major thing we've been noticing this week is her vision improvement. She looks for me in a room and she has been making really good eye contact with those she knows!
We've been incorporating deli meats into the diet through the last week or so. She's eating it really well so I'll need to get in the Ketocalculator and create some more meats using various deli meats and carbs.
Last week, on Michael's birthday, we lowered her Trileptal by another half of a pill.
She went from:
1 pill of Clobazam 3x a day and
1 pill of Trilpetal morning and night, half pill Trileptal in afternoon
to:
1 pill of Clobazam 3x a day and
half pill Trileptal morning, full pill Trileptal at night
She's so much more awake and alert now that she's down in dose by 1 full Trileptal pill. And the best part is that she is still seizure free even after the 2 small reductions in Trileptal!! I hope for her sake that we can make it all the way to NO Trileptal and stay seizure free!
***********************************
A quick side-note story:
Rayleigh was prescribed Clobazam by Dr. Hernandez at Cook Children's Hospital one year ago. It was not FDA approved so we had to fill our prescription at a Canadian pharmacy and have it shipped to us. We had to pay full price for the medicine and about $6-$10 shipping depending on how many months worth of pills we bought at a time.
Well, Clobazam has now been FDA approved!!! We are very excited about this because now we can get it locally and it will be covered by insurance and more doctors will be able to prescribe it for their patients.
On the down-side, immediately after being FDA approved it is illegal to purchase it out of country. This wouldn't normally be a problem EXCEPT it's not yet available in the USA. They expect it to be available in a few months. This is a major issue because Rayleigh only has a month and a half left worth of pills now at the house. We called her neurologist last week and he is going to push through a prescription and contact the FDA at customs to get it to us when we need it. Hopefully this works or I have no idea what we'll be doing! We're working with her neuro on a plan B...
She is 9 weeks seizure-free!!!
9 weeks in a row of no seizures! It's still unbelievable to Michael and me. She went from at least one seizure every single day to 9 weeks straight seizure-free!
I'm not going to lie, it's not like she's going through some overnight change and suddenly she's sitting, talking and all that. She's still behind developmentally but without the seizures making it worse she stands a really good chance of catching up. Now every physical therapy session sticks with her and she's making small improvements every day! The major thing we've been noticing this week is her vision improvement. She looks for me in a room and she has been making really good eye contact with those she knows!
We've been incorporating deli meats into the diet through the last week or so. She's eating it really well so I'll need to get in the Ketocalculator and create some more meats using various deli meats and carbs.
Last week, on Michael's birthday, we lowered her Trileptal by another half of a pill.
She went from:
1 pill of Clobazam 3x a day and
1 pill of Trilpetal morning and night, half pill Trileptal in afternoon
to:
1 pill of Clobazam 3x a day and
half pill Trileptal morning, full pill Trileptal at night
She's so much more awake and alert now that she's down in dose by 1 full Trileptal pill. And the best part is that she is still seizure free even after the 2 small reductions in Trileptal!! I hope for her sake that we can make it all the way to NO Trileptal and stay seizure free!
***********************************
A quick side-note story:
Rayleigh was prescribed Clobazam by Dr. Hernandez at Cook Children's Hospital one year ago. It was not FDA approved so we had to fill our prescription at a Canadian pharmacy and have it shipped to us. We had to pay full price for the medicine and about $6-$10 shipping depending on how many months worth of pills we bought at a time.
Well, Clobazam has now been FDA approved!!! We are very excited about this because now we can get it locally and it will be covered by insurance and more doctors will be able to prescribe it for their patients.
On the down-side, immediately after being FDA approved it is illegal to purchase it out of country. This wouldn't normally be a problem EXCEPT it's not yet available in the USA. They expect it to be available in a few months. This is a major issue because Rayleigh only has a month and a half left worth of pills now at the house. We called her neurologist last week and he is going to push through a prescription and contact the FDA at customs to get it to us when we need it. Hopefully this works or I have no idea what we'll be doing! We're working with her neuro on a plan B...
Monday, September 19, 2011
1 Month Down, 23 To Go
First off, I am so sorry to my active followers for the super long delay on this update! Rayleigh has been keeping me very busy with her diet and physical therapies!
All of that aside, Rayleigh is doing great. The first few weeks on the diet were very up and down with results and consistency. After those weeks she went 7 days without a seizure and then she started having them once every 3 days. While disappointed that they had started getting more frequent we were still happy for her to get a couple days of break between a day with a seizure. So she had gone from 1-2 seizures every day to 1 every 3 days. Improvement but not completely controlled.
We currently stand at 1 seizure a week. We went 6 days seizure-free and then had a seizure on Monday at 5:30am and then we went 6 days seizure-free and she had one this morning (Monday at 3:30am). 2 seizures in 2 weeks is waaayy better than 1-2 every day.
The best part is that she just seems happier. She's starting to show more of a personality than ever. Baby steps is the key here and I think we are making them. Hopefully within a year or two I will mean literal baby steps but for now I mean small strides towards a big goal.
Bug's seizures still only happen during sleep. She wakes up, has a blank stare, tenses up with arms extended out, makes a grunting noise as the lungs contract and then draws her arms to her body and stays tense and labored breathing for about a minute before she relaxes fully.
So this Ketogenic Diet definitely seems to be doing some good and helping out a great deal! We will be talking with her pediatric neurologist this week to see if we can start weaning her Trileptal off so that she is just taking the Clobazam while on the diet. If we get better seizure control on the diet we could take the Clobazam off as well!
Rayleigh's development is slowly improving but I doubt we will see any major changes until we get consistent seizure control. Once that happens her brain will really be able to maintain what she learns through therapies and further interest and improve eyesight! Lots of goals for one little girl but we will never give up on her!
All of that aside, Rayleigh is doing great. The first few weeks on the diet were very up and down with results and consistency. After those weeks she went 7 days without a seizure and then she started having them once every 3 days. While disappointed that they had started getting more frequent we were still happy for her to get a couple days of break between a day with a seizure. So she had gone from 1-2 seizures every day to 1 every 3 days. Improvement but not completely controlled.
We currently stand at 1 seizure a week. We went 6 days seizure-free and then had a seizure on Monday at 5:30am and then we went 6 days seizure-free and she had one this morning (Monday at 3:30am). 2 seizures in 2 weeks is waaayy better than 1-2 every day.
The best part is that she just seems happier. She's starting to show more of a personality than ever. Baby steps is the key here and I think we are making them. Hopefully within a year or two I will mean literal baby steps but for now I mean small strides towards a big goal.
Bug's seizures still only happen during sleep. She wakes up, has a blank stare, tenses up with arms extended out, makes a grunting noise as the lungs contract and then draws her arms to her body and stays tense and labored breathing for about a minute before she relaxes fully.
So this Ketogenic Diet definitely seems to be doing some good and helping out a great deal! We will be talking with her pediatric neurologist this week to see if we can start weaning her Trileptal off so that she is just taking the Clobazam while on the diet. If we get better seizure control on the diet we could take the Clobazam off as well!
Rayleigh's development is slowly improving but I doubt we will see any major changes until we get consistent seizure control. Once that happens her brain will really be able to maintain what she learns through therapies and further interest and improve eyesight! Lots of goals for one little girl but we will never give up on her!
Friday, August 12, 2011
Ketogenic Diet: Day 4
Thursday morning, our 4th day at Cook Children's Hospital, went really well. Rayleigh Bug slept all night and went seizure-free! She woke up still hooked up to the IV and on a really slow drip. We poured Rayleigh a bottle of flavored water and she actually sucked it down! We were so thrilled that she was taking the bottle again! She still wasn't drinking a whole lot but the fact that she sucked on it at all was a good sign. Then she had her morning medicine and some breakfast: chicken, pears, apple juice, butter, whipped up cream. She ate every bite just like a big girl!
After breakfast Jessica Holy, Bug's dietitian, stopped in to see how Bug was doing but there were 2 nurses and a girl from labs to draw blood in the room so she said she'd come back by after lunch and talk and steal us to make some meals for the next day.
Not sure if I've mentioned this yet but on the Ketogenic Diet a child's blood sugar level should be around the 60s-70s. If it drops below 45 she gets 1 ounce of apple juice. Her levels have so far been between 50-80 but she did have one time at 6am when they checked and she was right at 45 so they gave her 20ml apple juice and a couple of hours later it was up to 69 so all was well.
Dr. Malik made his rounds before lunchtime and answered any questions we had and said that he was good with us going ahead and getting discharged that day instead of waiting the full 5 days because she was taking to the diet (minus the thrush/almost dehydration) and she was drinking again and we knew what we were doing. He prescribed her 2 weeks worth of nystatin for her thrush but said that since we caught it so early, once we can no longer see the white give it to her for 3 more days and she'll be clear.
Excited with his news we still knew that Jessica had to clear us to discharge that day. While we were waiting to see her again, a diabetic educator came in to show us how to use our own glucometer and it was alot easier to learn that way than when we read our instructions! When we get home we are to check her blood sugar levels once a day for 30 days and her urine ketone levels once a day every day she's on the diet.
After lunch and medicine and Bug's nap Jessica came back around. She told us that as long as Bug is back to sucking on a bottle nipple or sippy cup and we feel comfortable with the diet than she is absolutely fine with us going home that day! So she answered a few quick questions for us like how to change foods in the Ketocalculator (so I can swap some for organic choices) and what kind of butter and whipping cream is best to use. Then I went across the hall with her to make some meals for Friday so that we would have enough until we could get to the grocery store. It was so much easier I was whipping up meals in record time!
Before we knew it it was 5:30p and we were getting prescription forms and packing our cooler with Bug's meals and loading bags on a cart and signing discharge papers and then we were on the road back home :)
It is now Friday evening and she has not had a seizure since Tuesday night, 1:30am. Knocking on wood now but it could be the beginning of something amazing!
After breakfast Jessica Holy, Bug's dietitian, stopped in to see how Bug was doing but there were 2 nurses and a girl from labs to draw blood in the room so she said she'd come back by after lunch and talk and steal us to make some meals for the next day.
Not sure if I've mentioned this yet but on the Ketogenic Diet a child's blood sugar level should be around the 60s-70s. If it drops below 45 she gets 1 ounce of apple juice. Her levels have so far been between 50-80 but she did have one time at 6am when they checked and she was right at 45 so they gave her 20ml apple juice and a couple of hours later it was up to 69 so all was well.
Dr. Malik made his rounds before lunchtime and answered any questions we had and said that he was good with us going ahead and getting discharged that day instead of waiting the full 5 days because she was taking to the diet (minus the thrush/almost dehydration) and she was drinking again and we knew what we were doing. He prescribed her 2 weeks worth of nystatin for her thrush but said that since we caught it so early, once we can no longer see the white give it to her for 3 more days and she'll be clear.
Excited with his news we still knew that Jessica had to clear us to discharge that day. While we were waiting to see her again, a diabetic educator came in to show us how to use our own glucometer and it was alot easier to learn that way than when we read our instructions! When we get home we are to check her blood sugar levels once a day for 30 days and her urine ketone levels once a day every day she's on the diet.
After lunch and medicine and Bug's nap Jessica came back around. She told us that as long as Bug is back to sucking on a bottle nipple or sippy cup and we feel comfortable with the diet than she is absolutely fine with us going home that day! So she answered a few quick questions for us like how to change foods in the Ketocalculator (so I can swap some for organic choices) and what kind of butter and whipping cream is best to use. Then I went across the hall with her to make some meals for Friday so that we would have enough until we could get to the grocery store. It was so much easier I was whipping up meals in record time!
Before we knew it it was 5:30p and we were getting prescription forms and packing our cooler with Bug's meals and loading bags on a cart and signing discharge papers and then we were on the road back home :)
It is now Friday evening and she has not had a seizure since Tuesday night, 1:30am. Knocking on wood now but it could be the beginning of something amazing!
Ketogenic Diet: Day 3
Rayleigh had a seizure Tuesday night around 1:30a. It was only 40 seconds and not as intense as usual. Then she had a really rough 3rd day. It started off with Rayleigh still not able to drink out of a bottle or a sippy cup. Her morning medicine was awful – she is on Trileptal and Clobazam both in pill form. We crush them and put them in a syringe and suck up some water in it and squirt it into her mouth. She was fighting us like crazy taking her medicine. I'd squirt some in her mouth and she'd just have it sit in the back of her throat for what seemed like an hour! It took a while but we got her to drink every ml of her medicine in the morning. We normally give her a chaser of juice or milk (milk is no longer allowed) with her medicine but as soon as we put the bottle in her mouth after medicine she seemed to almost gag. Afraid she would spit up all of her medicine we gave up.
Shortly after medicine she had her breakfast. Day 3 breakfast was egg salad, applesauce, whipped up whipping cream. She ate every bite but still wouldn't drink water after. We let our nurse know and she let our dietitian know what was going on.
Our dietitian said that we could try giving Bug some Diet Sprite or flavored water like MIO drops or Crystal Lite packs. So we found some Diet Sprite but she wouldn't drink that either. It didn't seem to be the drink that was upsetting her, it was more like the bottle nipple itself. It was then that I noticed some little white bumps on her tongue; it looked like inflamed taste buds.
Before lunch Dr. Malik made his rounds and we let him know that she's eating fine and her ketone levels were still high like they should be but she won't drink anything. He was concerned about her vomiting the night before and now she wouldn't drink anything. He couldn't confirm if they were linked or not or if they had anything to do with the new diet. He said, “Let's see how today goes before we make changes. Hopefully she doesn't vomit anymore and we can start getting her to drink. Otherwise, let your nurse know and we can work with Jessica to alter the diet ratio.”
I think let Dr. Malik about the small bumps in her mouth and he checked her out with a flashlight and said it looks like inflamed taste buds to him also but it could also be the early signs of thrash. A yeast infection in the mouth, developed when the body produces or is introduced to too much yeast. He said that it is very uncomfortable and could the reason for her not wanting the bottle in her mouth, sucking the nipple would be painful.
Bug then took a nap and got some good rest in. She woke up and had a big lunch of butter, chicken, pears and whipped up cream. She once again ate every bite and then she had her first round of thrush medicine to get that cleared up so she could hopefully start taking the bottle again.
We took her over to the playroom for a little bit to get some energy going and get her mind off of things then back to the room for more napping. Starting the diet takes a lot out of a kid and makes her very sleepy for about a week. And on top of that she'll be more irritable for the first month.
During her nap Jessica came to steal me away to make some meals for the next day while Michael stayed with Bug. She woke up while we were making meals and came to visit us and then he took her over to the playroom again. Jessica went back over to Michael and Bug to see if he wanted her to get a volunteer to stay with Bug so he could come make meals but he said he'd stay with her because she just threw up again. Oh no! He said that it was a very small amount though and went into some happy kicking and babbling after so he took her to the room to lay down but she just wanted to stay awake and hang out.
Jessica said that if it is thrush that is causing the mouth pain and the issue with the bottle and taking fluids then that could very easily be the reason for the upset stomach also. So it was down to about 4 different possible causes: diet, thrush, dehydration, eggs. Eggs are completely new to her diet and maybe her body just can't handle it yet.
That night, to prevent dehydration the nurses started an IV with fluids. The goal was to her hydrated enough to help clear up the thrush and calm her tummy. Sometimes when you're dehydrated it's really hard to sit and drink a glass of water so we used that theory with hopes to get her back into the groove of drinking tomorrow.
Shortly after medicine she had her breakfast. Day 3 breakfast was egg salad, applesauce, whipped up whipping cream. She ate every bite but still wouldn't drink water after. We let our nurse know and she let our dietitian know what was going on.
Our dietitian said that we could try giving Bug some Diet Sprite or flavored water like MIO drops or Crystal Lite packs. So we found some Diet Sprite but she wouldn't drink that either. It didn't seem to be the drink that was upsetting her, it was more like the bottle nipple itself. It was then that I noticed some little white bumps on her tongue; it looked like inflamed taste buds.
Before lunch Dr. Malik made his rounds and we let him know that she's eating fine and her ketone levels were still high like they should be but she won't drink anything. He was concerned about her vomiting the night before and now she wouldn't drink anything. He couldn't confirm if they were linked or not or if they had anything to do with the new diet. He said, “Let's see how today goes before we make changes. Hopefully she doesn't vomit anymore and we can start getting her to drink. Otherwise, let your nurse know and we can work with Jessica to alter the diet ratio.”
I think let Dr. Malik about the small bumps in her mouth and he checked her out with a flashlight and said it looks like inflamed taste buds to him also but it could also be the early signs of thrash. A yeast infection in the mouth, developed when the body produces or is introduced to too much yeast. He said that it is very uncomfortable and could the reason for her not wanting the bottle in her mouth, sucking the nipple would be painful.
Bug then took a nap and got some good rest in. She woke up and had a big lunch of butter, chicken, pears and whipped up cream. She once again ate every bite and then she had her first round of thrush medicine to get that cleared up so she could hopefully start taking the bottle again.
We took her over to the playroom for a little bit to get some energy going and get her mind off of things then back to the room for more napping. Starting the diet takes a lot out of a kid and makes her very sleepy for about a week. And on top of that she'll be more irritable for the first month.
During her nap Jessica came to steal me away to make some meals for the next day while Michael stayed with Bug. She woke up while we were making meals and came to visit us and then he took her over to the playroom again. Jessica went back over to Michael and Bug to see if he wanted her to get a volunteer to stay with Bug so he could come make meals but he said he'd stay with her because she just threw up again. Oh no! He said that it was a very small amount though and went into some happy kicking and babbling after so he took her to the room to lay down but she just wanted to stay awake and hang out.
Jessica said that if it is thrush that is causing the mouth pain and the issue with the bottle and taking fluids then that could very easily be the reason for the upset stomach also. So it was down to about 4 different possible causes: diet, thrush, dehydration, eggs. Eggs are completely new to her diet and maybe her body just can't handle it yet.
That night, to prevent dehydration the nurses started an IV with fluids. The goal was to her hydrated enough to help clear up the thrush and calm her tummy. Sometimes when you're dehydrated it's really hard to sit and drink a glass of water so we used that theory with hopes to get her back into the groove of drinking tomorrow.
Thursday, July 7, 2011
1 Week; 2 Appointments
Rayleigh Bug had a fairly busy week this week. Looking back at the calendar there is not one day unmarked... except tomorrow! Maybe a good ol' fashioned morning of relaxing in bed and drinking some coffee? (Bug will of course have milk!)
Tuesday was Bug's 15 month well-child visit with her pediatrician. She is 21.2 lbs and 29" long. Getting big! Still in the 25% but she's still on her same curve so she's perfectly fine!
When her pediatrician was checking on her he found an ear infection in her right ear that we had no idea she had! She hasn't been showing any signs of discomfort, couching or tugging at her ear! Our first thought was, maybe this could explain the sudden cause for increased seizure activity!
Then we talked with the pediatrician about her diet. Because Bug is developmentally behind she is not finger feeding yet. She is currently eating level 3 jarred foods, sometimes 2 level 2 jars. She also eats mashed up food or small bites of banana or other fruits like peaches or plums. But because she isn't eating a huge variety and isn't on a toddler formula (just organic whole milk) her pediatrician recommeded going to Akin's and getting an organic multi-vitamin that contains iron. So that's exactly what we did.
He also prescribed Ammoxocillian that we picked up that evening.
She got her chicken pox shot and goes back in a couple weeks to get her Hep A shot and for her pediatrician to check on her ear.
Then today, we saw her pediatric neurologist for a routine check up. This is the last time we will visit with him in person before she goes to Cook Children's Hospital for the Ketogenic Diet. We went over several medicine choices and discussed why she isn't trying them. Here's the breakdown.
Depakote: She's too young. Ped. neuros generally don't give this to kids under 2 because they are at a much higher risks for the liver problems that are a known side effect of Depakote. Also, she would need to be checked for mitochondrial diseases before starting this medicine because it can have adverse reactions if she has a mitochondrial disease.
Lamictal: Her ped. neuro isn't against Rayleigh trying this one now that she's a little older but she's still at risk for the rashes associated with side effects and how it affects her sodium levels. This medicine has a very long weaning onto process so we don't have time to try it and see if it works by the time we start the Ketogenic Diet and he (and I) believe the diet has a better chance than another medicine right now.
Vimpat: This is a very new medicine and doctors don't know a whole lot about it yet. There haven't been enough children on it for a long enough period of time to know how it affects a growing, maturning brain like Rayleigh's. It is a medicine to consider and we are going to talk to the epileptologist at Cook Children's about it when we go down for the Keto Diet.
Dilantin: This could control her type of seizures, being partial onset seizures. But generally, ped. neuros do not like giving it to children under 3 years old. Being on Dilantin for long periods of time can cause hairiness and teeth & gums problems. Also, the body grows a tolerancy for this medicine over time so the dose would have to be increased frequently for most cases.
So other than that we discussed her ear infection and as soon as we brought it up her ped. neuro said, "I wonder if that is the cause for her having 2 seizures a day recently?" Exactly what we were thinking.
Yesterday was her last day on Topomax and her ped. neuro says it will be out of her system by Monday so if she is still having 2 seizures a day after Monday then we are going to start her back on Keppra, 2ml twice a day. She's been on Keppra before but never in combination with Clobazam and/or Trileptal. Her ped. neuro said that it controls from a different area than the other 2 so we might be able to gain control until the Keto Diet by having 3 medicines that attack from 3 different areas. Again... we'll see...
When we go down to Cook Children's we are supposed to ask her epileptologist about doing a muscle biopsy and bloodwork (POLG1) to check for mitochondrial diseases and when he might think they should be done and we will also discuss more about the Vimpat medicine.
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Tuesday was Bug's 15 month well-child visit with her pediatrician. She is 21.2 lbs and 29" long. Getting big! Still in the 25% but she's still on her same curve so she's perfectly fine!
When her pediatrician was checking on her he found an ear infection in her right ear that we had no idea she had! She hasn't been showing any signs of discomfort, couching or tugging at her ear! Our first thought was, maybe this could explain the sudden cause for increased seizure activity!
Then we talked with the pediatrician about her diet. Because Bug is developmentally behind she is not finger feeding yet. She is currently eating level 3 jarred foods, sometimes 2 level 2 jars. She also eats mashed up food or small bites of banana or other fruits like peaches or plums. But because she isn't eating a huge variety and isn't on a toddler formula (just organic whole milk) her pediatrician recommeded going to Akin's and getting an organic multi-vitamin that contains iron. So that's exactly what we did.
He also prescribed Ammoxocillian that we picked up that evening.
She got her chicken pox shot and goes back in a couple weeks to get her Hep A shot and for her pediatrician to check on her ear.
Then today, we saw her pediatric neurologist for a routine check up. This is the last time we will visit with him in person before she goes to Cook Children's Hospital for the Ketogenic Diet. We went over several medicine choices and discussed why she isn't trying them. Here's the breakdown.
Depakote: She's too young. Ped. neuros generally don't give this to kids under 2 because they are at a much higher risks for the liver problems that are a known side effect of Depakote. Also, she would need to be checked for mitochondrial diseases before starting this medicine because it can have adverse reactions if she has a mitochondrial disease.
Lamictal: Her ped. neuro isn't against Rayleigh trying this one now that she's a little older but she's still at risk for the rashes associated with side effects and how it affects her sodium levels. This medicine has a very long weaning onto process so we don't have time to try it and see if it works by the time we start the Ketogenic Diet and he (and I) believe the diet has a better chance than another medicine right now.
Vimpat: This is a very new medicine and doctors don't know a whole lot about it yet. There haven't been enough children on it for a long enough period of time to know how it affects a growing, maturning brain like Rayleigh's. It is a medicine to consider and we are going to talk to the epileptologist at Cook Children's about it when we go down for the Keto Diet.
Dilantin: This could control her type of seizures, being partial onset seizures. But generally, ped. neuros do not like giving it to children under 3 years old. Being on Dilantin for long periods of time can cause hairiness and teeth & gums problems. Also, the body grows a tolerancy for this medicine over time so the dose would have to be increased frequently for most cases.
So other than that we discussed her ear infection and as soon as we brought it up her ped. neuro said, "I wonder if that is the cause for her having 2 seizures a day recently?" Exactly what we were thinking.
Yesterday was her last day on Topomax and her ped. neuro says it will be out of her system by Monday so if she is still having 2 seizures a day after Monday then we are going to start her back on Keppra, 2ml twice a day. She's been on Keppra before but never in combination with Clobazam and/or Trileptal. Her ped. neuro said that it controls from a different area than the other 2 so we might be able to gain control until the Keto Diet by having 3 medicines that attack from 3 different areas. Again... we'll see...
When we go down to Cook Children's we are supposed to ask her epileptologist about doing a muscle biopsy and bloodwork (POLG1) to check for mitochondrial diseases and when he might think they should be done and we will also discuss more about the Vimpat medicine.
Monday, July 4, 2011
Another Waiting Game
When we left off, Rayleigh's pediatric neurologist told us to wean off Topomax and she would stay on the Trileptal and Clobazam alone until we started the Ketogenic Diet in August. After a couple days of only taking Topomax at night Rayleigh began to have seizures twice a day rather than just once. The seizures remain only happening while she's asleep, so she went from having one during her nap to having one during her nap and then a second about an hour after falling asleep for the night.
These types of changes are not uncommon when weaning off of an anti-convulsant medication but when it continued for a week we called her neuros office and spoke with the doctor on call. It was not her usual ped neuro but we had spoken with this one before. She told us that based on Rayleigh's weight we can go ahead and increase her Clobazam from 25 mg daily (1 pill in morning, 1.5 pill at night) to 30 mg daily (1 pill, 3 times a day). We hadn't tried splitting her Clobazam into 3 times a day like she's been doing with her Trileptal.
So we gave her 1 pill with her 2ml Trileptal right after I got off the phone with the doctor. That night she did not have a seizure.
In fact, she has been back down to 1 seizure a day, at naptime, since we increased the dose of Clobazam. Its weird though, because Clobazam does not usually take effect so quickly. We'll see...
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These types of changes are not uncommon when weaning off of an anti-convulsant medication but when it continued for a week we called her neuros office and spoke with the doctor on call. It was not her usual ped neuro but we had spoken with this one before. She told us that based on Rayleigh's weight we can go ahead and increase her Clobazam from 25 mg daily (1 pill in morning, 1.5 pill at night) to 30 mg daily (1 pill, 3 times a day). We hadn't tried splitting her Clobazam into 3 times a day like she's been doing with her Trileptal.
So we gave her 1 pill with her 2ml Trileptal right after I got off the phone with the doctor. That night she did not have a seizure.
In fact, she has been back down to 1 seizure a day, at naptime, since we increased the dose of Clobazam. Its weird though, because Clobazam does not usually take effect so quickly. We'll see...
Tuesday, June 21, 2011
Bye Bye Topomax
We gave Topomax a fair trial. She was on it for a total of 18 days, 13 of which was the full dose (10mg capsule twice a day). The medicine never even slowed them down. She continues to have one a day, and unfortunately had 2 yesterday. They are still only happening about 30 minutes into her nap - she wakes up, has the episode and often goes back to sleep exhausted from the locking up.
Something we noticed a couple of days into Topomax was that she went back to holding her breath for approximately 20 seconds at the beginning of her seizure. She did this on previous medicines before she started Trileptal but when she was on Trileptal & Clobazam alone she would breath fairly normal throughout the entire seizure. So holding her breath again while on Topomax concerned us greatly.
Tried calling her pediatric neurologist Friday but he had a short day that day and didn't return our call Monday morning so I called again yesterday but he was out of the office so we talked with him today. He believes that Topomax would have shown some seizure activity decrease by now if it was going to at all. SO, we are taking her off.
It's a slow wean process of Topomax so she doesn't have withdrawl seizures. She will go down to once a day tomorrow and remain on that dose for 2 weeks and then be off all together.
She has no room to go up on the dose of Trileptal right now but we can call her pediatric epileptologist down at Cook Children's Hospital to order a blood test and see where her levels of Clobazam stand. If there is room to go up we might try that since Clobazam controlled her seizures for 17 days when she first started it.
We have scheduled her to start the Ketogenic Diet in August at Cook Children's Hospital and we're eager to give it a try even though it will involve a lot more than any medicine has. That can be a whole other blog post though! And I'm far too tired for that right now!
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Positive notes:
I have a good feeling about the Ketogenic Diet
Rayleigh is sitting independently for a couple of minutes at a time
Her balance is improving when sitting & she corrects herself when starting to lean
Rayleigh cut 2 new teeth
She's tracking objects & watching toys very well now
Rayleigh's smile lights up the world
Something we noticed a couple of days into Topomax was that she went back to holding her breath for approximately 20 seconds at the beginning of her seizure. She did this on previous medicines before she started Trileptal but when she was on Trileptal & Clobazam alone she would breath fairly normal throughout the entire seizure. So holding her breath again while on Topomax concerned us greatly.
Tried calling her pediatric neurologist Friday but he had a short day that day and didn't return our call Monday morning so I called again yesterday but he was out of the office so we talked with him today. He believes that Topomax would have shown some seizure activity decrease by now if it was going to at all. SO, we are taking her off.
It's a slow wean process of Topomax so she doesn't have withdrawl seizures. She will go down to once a day tomorrow and remain on that dose for 2 weeks and then be off all together.
She has no room to go up on the dose of Trileptal right now but we can call her pediatric epileptologist down at Cook Children's Hospital to order a blood test and see where her levels of Clobazam stand. If there is room to go up we might try that since Clobazam controlled her seizures for 17 days when she first started it.
We have scheduled her to start the Ketogenic Diet in August at Cook Children's Hospital and we're eager to give it a try even though it will involve a lot more than any medicine has. That can be a whole other blog post though! And I'm far too tired for that right now!
Positive notes:
I have a good feeling about the Ketogenic Diet
Rayleigh is sitting independently for a couple of minutes at a time
Her balance is improving when sitting & she corrects herself when starting to lean
Rayleigh cut 2 new teeth
She's tracking objects & watching toys very well now
Rayleigh's smile lights up the world
Tuesday, May 31, 2011
Down to the Last Options
So in short, Trileptal is no longer working to the potential we expected. Rayleigh is on 2ml Trileptal 3x a day and 1 pill of Clobazam in the morning and 1.5 pill of Clobazam at night. She continues to experience 1-2 seizures a day.
We called Cook Children's Hospital today because I am ready for her to start the Ketogenic Diet. My husband is ready, too but wants to wait a few months to exhaust one more option first. Topomax.
We spoke with Dr. Coleman and let him know that Cook's said the earliest available we could go down to start the diet would be August. He said that we aren't out of options as far as medications go, to try meanwhile. He said that Topomax would be the perfect medicine to start now because if it works we can cancel her Keto appt and if it doesn't then we have to stop that medicine when starting the diet anyway.
With the Keto diet, Rayleigh would still be on medicine throughout the course. If the diet controls her seizures she will be on it for 2-3 years. The Ketogenic Diet is a high-fat, low-carb, moderate protein diet... a stricter Atkins Diet. It teaches the brain to burn fat rather than food which uses the Ketones. Other than that, scientists don't know why it works... just that it does. Rayleigh pretty much has a 1/3 chance of success with the diet.
We start Topomax tomorrow or the day after (depending on the pharmacy). She will start with 1 capsule a night for 5 days and then 1 capsule twice a day for 7 days. We are to call her neurologist back in 2 weeks to report how Topomax is working. If it isn't we'll simply stop the medicine then.
In other news, Rayleigh now sits by herself for a minute or 2 at a time. Enjoys tummy time much more. Holding the bottle all by herself everytime. Stands at the table using her hands for a couple of minutes. AND takes a couple of steps when I hold her up by her arms!!! Yay physical & occupational therapy!!
We called Cook Children's Hospital today because I am ready for her to start the Ketogenic Diet. My husband is ready, too but wants to wait a few months to exhaust one more option first. Topomax.
We spoke with Dr. Coleman and let him know that Cook's said the earliest available we could go down to start the diet would be August. He said that we aren't out of options as far as medications go, to try meanwhile. He said that Topomax would be the perfect medicine to start now because if it works we can cancel her Keto appt and if it doesn't then we have to stop that medicine when starting the diet anyway.
With the Keto diet, Rayleigh would still be on medicine throughout the course. If the diet controls her seizures she will be on it for 2-3 years. The Ketogenic Diet is a high-fat, low-carb, moderate protein diet... a stricter Atkins Diet. It teaches the brain to burn fat rather than food which uses the Ketones. Other than that, scientists don't know why it works... just that it does. Rayleigh pretty much has a 1/3 chance of success with the diet.
We start Topomax tomorrow or the day after (depending on the pharmacy). She will start with 1 capsule a night for 5 days and then 1 capsule twice a day for 7 days. We are to call her neurologist back in 2 weeks to report how Topomax is working. If it isn't we'll simply stop the medicine then.
In other news, Rayleigh now sits by herself for a minute or 2 at a time. Enjoys tummy time much more. Holding the bottle all by herself everytime. Stands at the table using her hands for a couple of minutes. AND takes a couple of steps when I hold her up by her arms!!! Yay physical & occupational therapy!!
Sunday, May 15, 2011
Don't Know What's Going On
Rayleigh started Trileptal on April 14th. She then had 3 seizures over a 2 week period. A major improvement from the 3-5 per week she had been experiencing. Then, the first week of May she had 3 in one week. This past week she had one almost every day :( Yesterday she had 2. One at 6a and a second at 3:30p. Both about 20 minutes after falling asleep. Today she had one at 6:05a and a second one at 4:20p. I got the last one on video so we can show Dr. Coleman (her ped. neurologist) the changes. He may want to see if we can get an EEG to see if there are any changes in the brain where they are starting, etc.
Dr. Coleman is not the on-call doctor this weekend so we will be calling him first thing tomorrow morning.
There is a range of numbers they use when testing blood for medicine levels. When Rayleigh was on 4.5 ml a day her levels tested at the low in of the normal range. Last week when her seizure activity picked up we bumped the dose up to 5ml a day (spread into 3 doses a day). This hasn't improved anything.
We will see if we need to up the dose more or maybe try a different medicine combination with Trileptal. Right now she's on Clobazam & Trileptal. We may have just gone through a "honeymoon stage" and this might not be the medicine for her. Will post tomorrow after we hear from Dr. Coleman.
Dr. Coleman is not the on-call doctor this weekend so we will be calling him first thing tomorrow morning.
There is a range of numbers they use when testing blood for medicine levels. When Rayleigh was on 4.5 ml a day her levels tested at the low in of the normal range. Last week when her seizure activity picked up we bumped the dose up to 5ml a day (spread into 3 doses a day). This hasn't improved anything.
We will see if we need to up the dose more or maybe try a different medicine combination with Trileptal. Right now she's on Clobazam & Trileptal. We may have just gone through a "honeymoon stage" and this might not be the medicine for her. Will post tomorrow after we hear from Dr. Coleman.
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