Michael and I are at a loss. Over the last few weeks we have noticed Bug's seizure activity changing. At first it was just like her partial onset seizures at night were going away and were being replaced with 1-3 atonic head drop seizures. Her upper body would just kind of collapse for a split second and then she would pop right back up. This is different from the myclonic spasms she was having a year ago where her arms would spread out wide and she would quickly bend down so we (her neuro, Michael and I) do not think it is epileptic spasms again which is good because those are so difficult to control.
When the atonic head drops started we weren't too super concerned because were confidant that raising the strength of her VNS pulses and changing the duty cycle, discussed in the previous post, would zap away those last few drop seizures. Well, changing the cycle has seemed to completely control the partial onset seizures (fingers crossed!) but now the atonic head drops are increasing and coming in clusters.
I've been keeping all of the notes in Bug's seizure journal as usual and I just don't know what to make of it. We started a medicine a few weeks ago to control excessive drool but the neuro doesn't think that would attribute to the increase of drops.
I had a sickening feeling that he is going to want an EEG soon and Rayleigh just does NOT do well with the sleep deprivation involved with an EEG and doesn't always nap once we get there for the appointment. But if it is necessary then we will do it!
We see the neuro this week and I am really hoping that he believes we can tweak the settings on the VNS and get these drops under better control. After a cluster of 3-5 drops within a 3 minute period Bug gets fussy. She sounds uncomfortable, not scared or hurt, but as a mom you still want to "fix" whatever is ailing your child.
I really hope we can fix this issue before it gets any worse. She is my angel, my world.
--------------------------
Current meds:
Onfi 10mg, 1 pill, 3 times a day
Vimpat 50mg, 1/2 pill morning, 1 pill night
Banzel, 2ml twice a day
Kuspova (drool med), 2.5ml twice a day
VNS set at 1.25 out of 2 strength, on for 30 seconds every 3 minutes
Bug in Air
Showing posts with label head drops. Show all posts
Showing posts with label head drops. Show all posts
Sunday, March 10, 2013
Wednesday, March 7, 2012
2 Weeks Left on Sabril
Rayleigh Bug is now down to her last 2 weeks on Sabril (Vigabatrin). She will be on this medicine for a total of 2 months, give or take during the weaning process, when it's all said and done.
Last week Bug had her mandatory vision test. Eye exams are required by the FDA for any patient taking Sabril. For Bug, because she's only on the medication for 2 months, she was required to have one during the medication period and then she will have to have a second one done in August - a few months after she's done with Sabril. These eye exams are required because Sabril has several different side effects on vision.
The most common side effect on the eyes from Sabril is the loss or decrease of peripheral vision. If there is a decrease or loss to the peripheral vision due to the Sabril then it is permanent damage and will not be restored.
Other side effects include damage to the rods and the cones in the retina (that read light and darkness, black & white and color), overall decrease in vision and total loss of vision.
So, back to Bug! Last Tuesday she had an ERG (electroretinagram) on her eyes. Her pediatric neuro-opthomologist had her under anesthesia and placed small electrodes on her eyeballs. She sits in a dark room for 30 minutes to get a base reading on her rods and to calm the entire retina. Then they have a red light on to see how her eyes process that. Next is a soft white light, then a brighter white light, then a strobe light.
The test itself was really easy on Bug. She wasn't sore or anything for the electrodes and she wasn't nearly as groggy throughout the day like we thought she would be.
The ERG has to be evaluated by a trained person, computers cannot read it - yet, and it takes a while so we had a follow up appointment with her ped neuro-opthomologist (what a mouthful!) for that Friday.
During the exam Dr. Mike and his nurse used different lights and contrast tools for Bug to recognize and track and she did better than she usually does so that was enlightening! They also noted that her nystagmus has really calmed down, her eyes didn't shake once during the exam. It's very occasional now.
Dr. Mike explained that Bug's rods in her retina are responsible for seeing in the dark and seeing black and white images. Her rods are at 100%, so they're perfect and not affected by the medicine at all!
Then he said that her cones, responsible for seeing light and bright objects, are 1/3 to 1/2 depleted. He said that this could absolutely be caused by the medicine. He's not able to tell us for sure because she didn't have an ERG prior to starting Sabril so he doesn't have a previous test to compare these results to and see if it's something new or was always there. We really hope that the depletion was caused by Sabril because if it is then there is a good chance they will heal back to 100% after she's done taking Sabril.
We have an appointment with her ped neurologist this week and our main question to him is this: Bug has had increased headdrops, at least one a day, for the past week now. She is also cutting teeth bad and getting a small fever about every other day that we are treating with Advil. That being said, should we stay at this level of Sabril for the last 2 weeks or wean it off in case it damages her eyes further, or should we increase the dose for the last 2 weeks to control these head drops?
Last week Bug had her mandatory vision test. Eye exams are required by the FDA for any patient taking Sabril. For Bug, because she's only on the medication for 2 months, she was required to have one during the medication period and then she will have to have a second one done in August - a few months after she's done with Sabril. These eye exams are required because Sabril has several different side effects on vision.
The most common side effect on the eyes from Sabril is the loss or decrease of peripheral vision. If there is a decrease or loss to the peripheral vision due to the Sabril then it is permanent damage and will not be restored.
Other side effects include damage to the rods and the cones in the retina (that read light and darkness, black & white and color), overall decrease in vision and total loss of vision.
So, back to Bug! Last Tuesday she had an ERG (electroretinagram) on her eyes. Her pediatric neuro-opthomologist had her under anesthesia and placed small electrodes on her eyeballs. She sits in a dark room for 30 minutes to get a base reading on her rods and to calm the entire retina. Then they have a red light on to see how her eyes process that. Next is a soft white light, then a brighter white light, then a strobe light.
The test itself was really easy on Bug. She wasn't sore or anything for the electrodes and she wasn't nearly as groggy throughout the day like we thought she would be.
The ERG has to be evaluated by a trained person, computers cannot read it - yet, and it takes a while so we had a follow up appointment with her ped neuro-opthomologist (what a mouthful!) for that Friday.
During the exam Dr. Mike and his nurse used different lights and contrast tools for Bug to recognize and track and she did better than she usually does so that was enlightening! They also noted that her nystagmus has really calmed down, her eyes didn't shake once during the exam. It's very occasional now.
Dr. Mike explained that Bug's rods in her retina are responsible for seeing in the dark and seeing black and white images. Her rods are at 100%, so they're perfect and not affected by the medicine at all!
Then he said that her cones, responsible for seeing light and bright objects, are 1/3 to 1/2 depleted. He said that this could absolutely be caused by the medicine. He's not able to tell us for sure because she didn't have an ERG prior to starting Sabril so he doesn't have a previous test to compare these results to and see if it's something new or was always there. We really hope that the depletion was caused by Sabril because if it is then there is a good chance they will heal back to 100% after she's done taking Sabril.
We have an appointment with her ped neurologist this week and our main question to him is this: Bug has had increased headdrops, at least one a day, for the past week now. She is also cutting teeth bad and getting a small fever about every other day that we are treating with Advil. That being said, should we stay at this level of Sabril for the last 2 weeks or wean it off in case it damages her eyes further, or should we increase the dose for the last 2 weeks to control these head drops?
Monday, February 20, 2012
Long Overdue Update Post
Rayleigh is 1 month into her Sabril medicine. This is the new medicine she's on specifically designed to treat infantile spasms. She is responding really well to the medicine. It's a pain in the butt to give her, but she's responding well so we'll push through! It's only for 2 months - only 1 more month to go! She won't be on the Sabril (aka Vigabatrin) for longer than 2 months because of the side effects on her eyes. The longer she's on the Sabril, the higher her chances of poor vision.
She had her EEG a couple Fridays ago. This EEG was to compare her brain waves on the Sabril to the EEG in December. The December EEG was when we discovered she was now having infantile spasms - abnormal brain activity even when not having a seizure.
The most recent EEG shows improvement!
The Sabril is helping her. She is having less spike activity and way less spasms. In fact, the only spasms we've seen recently were head drops and they were only on days that she was teething pretty bad (stress on her body allows for breakthrough seizures/spasms).
Her brain activity is better but not all better. It is unlikely that the Sabril will completely normalize her brain activity since she's already been on it for a full month but it could still show more improvement.
Once her 2 months on Sabril is over we will wean her off Sabril.
Next plan of action could be 1 of 2 things: Increase Ketogenic Diet ratio to 4:1 (she's currently on 3.5:1) OR Start her on Vimpat, a different seizure control medicine.
Ideally, we'd love to go up on the diet ratio and give that a chance but that's all about whether her body can handle the added fat or not.
Rayleigh has an ERG scheduled at an eye surgery center at the end of this month. An ERG is an electroretinography or electroretinogram. It's to test her eyesight. Visual exams are required by the FDA during the course of taking Sabril. The ERG will be done at 6am under anesthesia. They will place small electrodes to Bug's eyeballs to measure electrical responses to the eye to look for any abnormalities. So I'll be posting again after that.
She's such a strong little girl and we love her with all of our hearts!!
Thursday, January 5, 2012
Long Day Followed by an Even Longer Morning
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.
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.
Thursday, October 6, 2011
Diet Update
We are 2 months into the Ketogenic Diet and Rayleigh is doing so well! She has taken to it like a champ from the beginning eating every bite every time whether she's tired, full, fussy or whatever. Through September she was still having about 1 seizure a week. Today we are on day 16 seizure-free! KNOCK ON WOOD
She's showing more personality now than ever before. Even friends and family that don't see her every day are noticing the change. It's small and gradual but it's there. She lights up when she sees people she loves, she reacts to things more now, she vocalizes a lot more now. Bug is also making some strides in development. She's doing way more propping during tummy time and rolling all over! We're still working on getting her to sit independently and reach for toys on her own but we're making progress with her.
Rayleigh Bug has tried hot dogs and spaghetti squash (two different meals, not together!) in the last month and loves both. It's so exciting to see her trying new things!
Bug had a well-baby check up yesterday and she is currently 29 1/2 inches tall and just about 24 lbs. She is now on the 5-10% for height and 50% for weight. Her pediatrician doesn't think it's anything to worry about at this point and she looks healthy :)
In the last couple of weeks Rayleigh has been doing what we call "head drops". It mostly happens when she's tired and is usually in her Bumbo but she's also done them while we're carrying her. What she does is, her upper body will just kind of fall forward for a split second and then she'll pop right back up. We took a video of them and showed them to her pediatric neurologist and he doesn't think they are seizure activity. He thinks they are behavioral. Bug has her monthly check up with him Monday so we will talk more about that and discuss whether to get an EEG or not (right now, probably not).
She's showing more personality now than ever before. Even friends and family that don't see her every day are noticing the change. It's small and gradual but it's there. She lights up when she sees people she loves, she reacts to things more now, she vocalizes a lot more now. Bug is also making some strides in development. She's doing way more propping during tummy time and rolling all over! We're still working on getting her to sit independently and reach for toys on her own but we're making progress with her.
Rayleigh Bug has tried hot dogs and spaghetti squash (two different meals, not together!) in the last month and loves both. It's so exciting to see her trying new things!
Bug had a well-baby check up yesterday and she is currently 29 1/2 inches tall and just about 24 lbs. She is now on the 5-10% for height and 50% for weight. Her pediatrician doesn't think it's anything to worry about at this point and she looks healthy :)
In the last couple of weeks Rayleigh has been doing what we call "head drops". It mostly happens when she's tired and is usually in her Bumbo but she's also done them while we're carrying her. What she does is, her upper body will just kind of fall forward for a split second and then she'll pop right back up. We took a video of them and showed them to her pediatric neurologist and he doesn't think they are seizure activity. He thinks they are behavioral. Bug has her monthly check up with him Monday so we will talk more about that and discuss whether to get an EEG or not (right now, probably not).
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