And sometimes I don't update because I simply don't know what to say... where to begin?
We seemed to have sailed smoothly though the holidays only to find ourselves with increased seizures, worsening behavior and no answers. Last Thursday was the first call in many months from school to come get Jenelle because of seizures. Not a long lasting grand mal, so we escaped Diastat and an ambulance ride... but clustering complex partial seizures (our new "Groucho Marx" seizure) that left Jenelle not exactly herself so the school nurse was concerned - rightfully so. Just as we finally get to the dose of Felbatol we were shooting for. One step forward, two steps back.
And on top of the seizures, Jenelle's bad behavioral habits have returned. She is scratching herself, pulling her hair out, rolling her fingers in her hair until they get caught - then having to cut her hair from her finger to get the circulation to return. She soothes herself with a rhythmic coo.. and when that isn't enough to soothe her, she bangs her head with her fist or on the floor. When lying on the floor she scoots and arches her back and neck (and to see it in person, you'd think she was going to snap her neck!) The other day this caused a large rug burn on the back of her neck - something to watch to make sure it doesn't take long to heal and get infected. God I wish she could just tell us what it is.
Dr. Tran is not oblivious and is very much in the loop. We have to rule things out like lack of sleep (which would cause an increase in seizures), and the possibility that the Felbatol dose is too high. Little changes with not much difference. It could be hormones, and the onset of menses (which still hasn't started, thankfully.) Illness... which is a strong possibility at this point as Jenelle suffered much this weekend with diarrhea. Imagine your 12 year old diapered child with the runs... not fun in any way. After Saturday's "poopy day" Jenelle was fine the rest of the weekend so I sent her to school, only to have to pick her up from school again today for another runny diaper. Right now it is 10:45 p.m. and I've been snuggling with her feeling her twitch and jerk and toss and turn trying to fall asleep. We listen to music to no avail. No rest for the princess - but tomorrow will be a day at home until 24 hours have passed from her last runny BM (joy!)
I'm worried... the subtle changes in her like this... the regression scares me. If Felbatol means she will be pulling her hair out, then no thank you. That is a side effect I never missed. Is she in pain? Possibly. Last Thursday, I gave her in Tylenol, just in case it was a headache... but did it help I'm not sure.
Sometimes, things change so quickly I don't know where to begin. Sometimes, there are more questions than answers. This isn't my first dance, so I know it takes time - I just wish she could tell us what it is. And I'm worried.
Thank you always for your thoughts and prayers - please keep them coming and pray things settle down soon. I'll keep you posted.
Tuesday, March 03, 2015
Thursday, February 05, 2015
And before you know it... it's February!
Well, it seems I'm very remiss in updating. Where to begin?
I could have sworn I posted an update since we left the EGG in October. Apparently not... so let's start where we left off.
After Jenelle's EEG, we made some major changes in her medications. Adding back Felbatol (Felbamate) really made a difference... both in seizure control, vocalization and awareness and unfortunately with some insomnia. We had nights where Brett and I were in bed and we started hearing Jenelle's toys at 3AM... only to find that Jenelle had somehow made her way out of her bed, down the hall and into the living room to play. At 3AM. Overall, now that we knew what to look for, we realized how much the Felbatol really controlled her seizures. Since adding it back, Jenelle has not had a tonic or grand mal seizures once! (knock wood!) Once the initial side effect of insomnia wore off, we cruised through the holidays with much seizure control, and lots of fun watching Jenelle be more alert, aware and vocal!
On January 9 we had our follow up with Dr. Tran. Sometime during the winter vacation, we started to notice Jenelle having some break through complex partial seizures lasting 20 seconds or more, but never clustering. When she has this seizures, her eye brows do funny things - I call it the Groucho Marx seizure. Upon describing them, Dr. Tran believes they are complex partial, but not much to be worried about given Jenelle's constant electronic activity. Dr. Tran was pleased with Jenelle's progress, and said that we had room to increase Felbatol (double the dose) to see if that helped the new seizures we were seeing. We also decided to lower the morning dose of Onfi, to help Jenelle stay awake during the day. Unfortunately... I goofed, so we had an increase of seizures recently.
You see, our insurance at my firm changed again on January 1. Knowing we no longer had to go "out of network" for Jenelle, it completely slipped my mind to ask for a case manager when switching from one insurance to the next. With the new written prescriptions in hand, we took them to the pharmacy only to learn that our "new insurance" needed a prior authorization before approving the medications Jenelle was already taking - you know the drill, "We won't approve this, until you've tried X, Y, Z first..." etc. So we had a delay in getting the Felbatol pills when I already decided to decrease Onfi. Great... even more seizures as we waited for the increase to be approved! Finally, we got approval and we were able to get Jenelle on the full dose as of last week. So far, no effect on the new seizures, but we'll give it more time.
So, that is all for now. I'll update with photos from the holidays when I can. Thank you for the continued prayers... we'll keep you posted!
I could have sworn I posted an update since we left the EGG in October. Apparently not... so let's start where we left off.
After Jenelle's EEG, we made some major changes in her medications. Adding back Felbatol (Felbamate) really made a difference... both in seizure control, vocalization and awareness and unfortunately with some insomnia. We had nights where Brett and I were in bed and we started hearing Jenelle's toys at 3AM... only to find that Jenelle had somehow made her way out of her bed, down the hall and into the living room to play. At 3AM. Overall, now that we knew what to look for, we realized how much the Felbatol really controlled her seizures. Since adding it back, Jenelle has not had a tonic or grand mal seizures once! (knock wood!) Once the initial side effect of insomnia wore off, we cruised through the holidays with much seizure control, and lots of fun watching Jenelle be more alert, aware and vocal!
On January 9 we had our follow up with Dr. Tran. Sometime during the winter vacation, we started to notice Jenelle having some break through complex partial seizures lasting 20 seconds or more, but never clustering. When she has this seizures, her eye brows do funny things - I call it the Groucho Marx seizure. Upon describing them, Dr. Tran believes they are complex partial, but not much to be worried about given Jenelle's constant electronic activity. Dr. Tran was pleased with Jenelle's progress, and said that we had room to increase Felbatol (double the dose) to see if that helped the new seizures we were seeing. We also decided to lower the morning dose of Onfi, to help Jenelle stay awake during the day. Unfortunately... I goofed, so we had an increase of seizures recently.
You see, our insurance at my firm changed again on January 1. Knowing we no longer had to go "out of network" for Jenelle, it completely slipped my mind to ask for a case manager when switching from one insurance to the next. With the new written prescriptions in hand, we took them to the pharmacy only to learn that our "new insurance" needed a prior authorization before approving the medications Jenelle was already taking - you know the drill, "We won't approve this, until you've tried X, Y, Z first..." etc. So we had a delay in getting the Felbatol pills when I already decided to decrease Onfi. Great... even more seizures as we waited for the increase to be approved! Finally, we got approval and we were able to get Jenelle on the full dose as of last week. So far, no effect on the new seizures, but we'll give it more time.
So, that is all for now. I'll update with photos from the holidays when I can. Thank you for the continued prayers... we'll keep you posted!
Friday, October 24, 2014
Results from the Video EEG Monitoring - a new game plan!
I always joke, the best way to cure seizures is to leave the damn EEG leads on the child full time! So, here we are, Day 5 and no seizure activity. The EEG leads are finally off. We did not capture a tonic clonic or tonic seizure, but we have obtained a lot of information, and we have a new plan.
On Thursday, we met with Dr. Tran and her team to discuss what she's observed so far, and her recommended plan. Turns out, Jenelle has constant "electric neurological interference" (my term, and Dr. Tran agreed it was a great description for what is going on in her brain.) What is that you ask? Well, maybe photos will help...
The photo below is of the EEG wave patterns we observed all day, every day when Jenelle was hooked up to the EEG. We've always seen this type of "chaotic" pattern when Jenelle has had an EEG, and just assumed it was indicating her movements, etc. We learned that this chaotic pattern is not because of movement, but it is actually electronic transmissions misfiring and disrupting constant brain wave thoughts. The chaotic waves inside the red boxes I applied to the photo below are not what a normal EEG should look like.
The lines in the green box below is what a "normal" EEG should look like. Small, calm squiggly lines on every lead going across the page. If the EEG were hooked up to you or me, it would have pages and pages of clean, small, calm lines. Jenelle's EEG for the last 5 days had pages and pages of chaotic lines like the photo in the red box. Constant electronic neurologic interference typical for a child with a diagnosis of Lennox Gastaut. Imagine trying to function when your brain is constantly interrupted like that - frankly I'm amazed at how well she adapts and functions given what her EEG looks like all the time.
On Thursday, we met with Dr. Tran and her team to discuss what she's observed so far, and her recommended plan. Turns out, Jenelle has constant "electric neurological interference" (my term, and Dr. Tran agreed it was a great description for what is going on in her brain.) What is that you ask? Well, maybe photos will help...
The photo below is of the EEG wave patterns we observed all day, every day when Jenelle was hooked up to the EEG. We've always seen this type of "chaotic" pattern when Jenelle has had an EEG, and just assumed it was indicating her movements, etc. We learned that this chaotic pattern is not because of movement, but it is actually electronic transmissions misfiring and disrupting constant brain wave thoughts. The chaotic waves inside the red boxes I applied to the photo below are not what a normal EEG should look like.
The lines in the green box below is what a "normal" EEG should look like. Small, calm squiggly lines on every lead going across the page. If the EEG were hooked up to you or me, it would have pages and pages of clean, small, calm lines. Jenelle's EEG for the last 5 days had pages and pages of chaotic lines like the photo in the red box. Constant electronic neurologic interference typical for a child with a diagnosis of Lennox Gastaut. Imagine trying to function when your brain is constantly interrupted like that - frankly I'm amazed at how well she adapts and functions given what her EEG looks like all the time.
So, although we didn't catch a big seizure like a grand mal (tonic clonic) or tonic seizure, we have a better idea of what Jenelle's brain is doing. Dr. Tran has decided to make some big changes in Jenelle's medications to see if we can "clean up" the EEG to get it to look more calm like the lines in the green box above. We have discontinued Vimpat, and we are returning to a drug Jenelle had been on for almost 6 years - Felbamate. We are also going to decrease the Onfi during the day as it makes her more drowsy.
Since stopping the Vimpat on Wednesday, Jenelle does seem more alert! Even Nurse Sue at UCLA felt Jenelle was too drugged when we considered the VNS a year ago; so its nice to see her more awake off the Vimpat. Brett says to be careful what you wish for... Unfortunately, Jenelle has been waking in the middle of the night, every single night since staying here. Brett and I have been wondering if she has had a habit of waking at night, or if this is a fluke because of the hospital environment? I think I may look into getting a video baby monitor so we can keep a better eye on her. Insomnia is something that can happen with Felbamate, and sleep deprivation can increase seizures, so looks like we may have some restless nights ahead.
Another thing we learned is that the seizures we thought were Absence seizures are not true Absence seizures. Sometimes, Jenelle "checks out" as she waits for some of the electronic interference to clear up... her outward appearance when that happens looks like an Absence seizure, but isn't. Tricky isn't it? The fluke grand mals, tonic seizures are just that... random break through seizures that should be treated separately, and with Diastat if they go over 5 minutes. If the atypical Absence seizures begin to interfere with Jenelle's function (i.e. excessive drooling, inability to walk, sit up, etc.) we should continue to monitor those and treat with Diastat if they go on for over 15 minutes of an hour, which is no different that what we've been doing all along!
We get to go home today after our last dose of Felbamate at 3:00 pm. Dr. Tran will monitor Jenelle's blood counts weekly for the next six weeks. One of the major side effects that can happen in the early stages of beginning Felbamate is aplastic anemia. Even though Jenelle used to take is without this side effect, we will still add it back with caution. Our next follow up with Dr. Tran will be in January. If things improve, we may have another overnight EEG to see if the waves are cleaner!
That is all for now! Lots of wonderful information! Thank you for the prayer - as always, I'll keep you posted!
Since stopping the Vimpat on Wednesday, Jenelle does seem more alert! Even Nurse Sue at UCLA felt Jenelle was too drugged when we considered the VNS a year ago; so its nice to see her more awake off the Vimpat. Brett says to be careful what you wish for... Unfortunately, Jenelle has been waking in the middle of the night, every single night since staying here. Brett and I have been wondering if she has had a habit of waking at night, or if this is a fluke because of the hospital environment? I think I may look into getting a video baby monitor so we can keep a better eye on her. Insomnia is something that can happen with Felbamate, and sleep deprivation can increase seizures, so looks like we may have some restless nights ahead.
Another thing we learned is that the seizures we thought were Absence seizures are not true Absence seizures. Sometimes, Jenelle "checks out" as she waits for some of the electronic interference to clear up... her outward appearance when that happens looks like an Absence seizure, but isn't. Tricky isn't it? The fluke grand mals, tonic seizures are just that... random break through seizures that should be treated separately, and with Diastat if they go over 5 minutes. If the atypical Absence seizures begin to interfere with Jenelle's function (i.e. excessive drooling, inability to walk, sit up, etc.) we should continue to monitor those and treat with Diastat if they go on for over 15 minutes of an hour, which is no different that what we've been doing all along!
We get to go home today after our last dose of Felbamate at 3:00 pm. Dr. Tran will monitor Jenelle's blood counts weekly for the next six weeks. One of the major side effects that can happen in the early stages of beginning Felbamate is aplastic anemia. Even though Jenelle used to take is without this side effect, we will still add it back with caution. Our next follow up with Dr. Tran will be in January. If things improve, we may have another overnight EEG to see if the waves are cleaner!
That is all for now! Lots of wonderful information! Thank you for the prayer - as always, I'll keep you posted!
Wednesday, October 22, 2014
Happy 12th Birthday Jenelle!
Jenelle spent her 12th Birthday at CHOC, and the Child Life Staff made her birthday extra special!
The family will celebrate Jenelle's birthday on Sunday with dinner and cake! One more year till we have all teenagers in the house! What a blessing!
Tuesday, October 21, 2014
Video EEG Monitoring at CHOC
Yesterday, Jenelle and I checked into our new home for a few days at Children's Hospital Orange County (CHOC.) Jenelle was hooked up to a video EEG, and we'll be here anywhere from 3 to 5 days for monitoring. The last time we had a stay at CHOC, Jenelle was in a crib; so this has been a new experience for us. She is doing well in the hospital bed, and we have a large room to ourselves with a pad on the floor so she can play. I was relieved they had a pad for the floor because - yuck - hospital floors, and YAY, she can play with her toys more comfortably!
So yesterday evening, we marked what we thought were small, short absence seizures. In speaking with Dr. Tran today, as it turns out, the seizure activity I marked wasn't seizure activity at all! Apparently, it was just Jenelle being Jenelle, and her "non-responsiveness" is more behavioral - i.e. Jenelle just likes to check out of a conversation once in a while! Gee, don't we all?
The activity we marked last night was very, very similar to her absence seizure, except she wasn't drooling. I just figured we didn't have drool because they were so short. good to know, but frustrating that we haven't caught any seizure activity. The doctor is going to decrease her medication tonight to see if we can get more seizures.
I know it sounds weird to ask for prayers for seizures; but truly it would help to capture seizures on the EEG so please send prayers, and seizure vibes to Jenelle that she gives them what we need to see!
Jenelle is doing well and likes having meals delivered to her whenever she wants! However, I think the environment has her a little off schedule - Jenelle woke up at 4:00 am and did not go back to sleep (despite my best efforts at playing music, playing her audio book and singing) until 10:30 am. Mommy is very tired to say the least! We're going to try to keep her awake tonight a little longer than normal to help with sleep deprivation (and hopefully that will bring on seizures!)
The other good news from Dr. Tran was that her MRI was normal. In fact, according to the doctor, her brain is "very normal and healthy!" Doesn't it just make you wonder what is going on in that pretty head!
So, day two is almost to a close. Again, please send us all your unwanted seizures! We can use them! I'll keep you posted!
So yesterday evening, we marked what we thought were small, short absence seizures. In speaking with Dr. Tran today, as it turns out, the seizure activity I marked wasn't seizure activity at all! Apparently, it was just Jenelle being Jenelle, and her "non-responsiveness" is more behavioral - i.e. Jenelle just likes to check out of a conversation once in a while! Gee, don't we all?
The activity we marked last night was very, very similar to her absence seizure, except she wasn't drooling. I just figured we didn't have drool because they were so short. good to know, but frustrating that we haven't caught any seizure activity. The doctor is going to decrease her medication tonight to see if we can get more seizures.
I know it sounds weird to ask for prayers for seizures; but truly it would help to capture seizures on the EEG so please send prayers, and seizure vibes to Jenelle that she gives them what we need to see!
Jenelle is doing well and likes having meals delivered to her whenever she wants! However, I think the environment has her a little off schedule - Jenelle woke up at 4:00 am and did not go back to sleep (despite my best efforts at playing music, playing her audio book and singing) until 10:30 am. Mommy is very tired to say the least! We're going to try to keep her awake tonight a little longer than normal to help with sleep deprivation (and hopefully that will bring on seizures!)
The other good news from Dr. Tran was that her MRI was normal. In fact, according to the doctor, her brain is "very normal and healthy!" Doesn't it just make you wonder what is going on in that pretty head!
So, day two is almost to a close. Again, please send us all your unwanted seizures! We can use them! I'll keep you posted!
Monday, October 13, 2014
CHOC WALK 2014 - WE DID IT!
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| Jenelle at Mommy after the CHOC Walk 2014! |
Yesterday, Jenelle and I got up and out the door at 5:00 AM to participate in the CHOC Walk in the Park at the Disneyland Resort (a 5K). The walk was at capacity, and Jenelle got a little cranky at teh end, but we did it!
It is not too late to support Jenelle - if you can make a donation, please do so at this website! THANK YOU!
Jenelle's CHOC Walk Page
Friday, September 05, 2014
We survived, but barely! First day of Middle School for Jenelle and other updates
Well, we survived the MRI, the trip and exam at Berkeley, and now, the first day/week of Middle School ... barely.
Actually, I should have known better. Jenelle has been out of her routine since August 21 - and she has certainly been trying to communicate that these past few days. Not a happy girl at all!
Jenelle's first day at her new Middle School was not great. The poor child was very upset with the new routine and showed it by screaming, crying, biting herself and pulling her hair! I received a call from her new teacher that afternoon and the school nurse asking for things they could do to make it easier. My only explanation is that Jenelle was fed up with changes. I offered ideas to keep her happy, and said we might be in for a rough few days.
When I picked up Jenelle at YMCA, She embraced me with a strong hug and would not let go for at least 5 minutes! That evening, she was cranky, so I spent some extra cuddle time, and had a heart to heart - explaining to Jenelle that she had a new class, a new school, etc.
Again the next morning, I reminded Jenelle to be patient as her new teacher was getting to know her better. My talk seemed to help and I got an e-mail stating that Jenelle was happy and finally warming up to her new class. Whew!
Anyway - here are some photos to enjoy from our crazy end of August!
Actually, I should have known better. Jenelle has been out of her routine since August 21 - and she has certainly been trying to communicate that these past few days. Not a happy girl at all!
Jenelle's first day at her new Middle School was not great. The poor child was very upset with the new routine and showed it by screaming, crying, biting herself and pulling her hair! I received a call from her new teacher that afternoon and the school nurse asking for things they could do to make it easier. My only explanation is that Jenelle was fed up with changes. I offered ideas to keep her happy, and said we might be in for a rough few days.
When I picked up Jenelle at YMCA, She embraced me with a strong hug and would not let go for at least 5 minutes! That evening, she was cranky, so I spent some extra cuddle time, and had a heart to heart - explaining to Jenelle that she had a new class, a new school, etc.
Again the next morning, I reminded Jenelle to be patient as her new teacher was getting to know her better. My talk seemed to help and I got an e-mail stating that Jenelle was happy and finally warming up to her new class. Whew!
Anyway - here are some photos to enjoy from our crazy end of August!
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| Mommy and Jenelle snuggles during her MRI |
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| JD and Jenelle on campus at UC Berkeley (note Jenelle's sun glasses after eye dilation) |
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| "I think I want some chips!" |
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| If Mommy won't feed me, I'll feed myself! |
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| First day of school - 6th and 8th Grades 2014! |
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