Today was my first day back to work (just like every August in the life of a teacher). I needed a refresher in just how long it takes to get myself motivated to get up and ready after 4+ snooze button pushes plus getting Cameran ready for daycare aka Snot Haven. Needless to say we were pushing the envelope today. Tomorrow we have to do better. Wednesday is a must. In any case, it went. I didn't get to stay and get my room ready for a little longer because Cami had her EEG follow-up...
As the title gives away...she is seizure free!!! Her brain waves are completely normal, and now we are just beginning a slow decrease of the topamax. Three weeks from now Cami will be drug free!!! (Okay, I lied. There's still Zantac to be had...)
We are so thankful. Cameran is smiley and giggley again!
Our family has grown by one! Introducing Payton Lana, aka Petrie...Follow us as we journey through life with a lil something extra!
Showing posts with label seizures. Show all posts
Showing posts with label seizures. Show all posts
Tuesday, September 28, 2010
Tuesday, July 6, 2010
Weekend in review...and a little domesticity
This Fourth of July was pretty subdued. We did not have sparklers, nor did we go to any BBQs, other than my parents' house because, well, Cameran...
We still are in the midst of these ACTHar steroid shots. Previously I posted about Cami being an insomniac. She truly is. And it's the meds and I hate them for doing that to her. You can see her below in her pretty 4th of July dress, looking drugged up and puffy. Boy has her face gotten puffy in the past two weeks.
(Just a little note--I'd like to think I am a better photographer than my pictures show, but I am pretty sure that 95% of the pics on this blog come from my iPhone, hence the fuzziness of some. The timer has such a delay. Sigh.)
We still are in the midst of these ACTHar steroid shots. Previously I posted about Cami being an insomniac. She truly is. And it's the meds and I hate them for doing that to her. You can see her below in her pretty 4th of July dress, looking drugged up and puffy. Boy has her face gotten puffy in the past two weeks.
(Just a little note--I'd like to think I am a better photographer than my pictures show, but I am pretty sure that 95% of the pics on this blog come from my iPhone, hence the fuzziness of some. The timer has such a delay. Sigh.)
Sunday, July 4, 2010
Insomniac
Not me.
Not Ryan...
Not the dogs...
CAMERAN!!!!!!!!!!!!!
Note to Cameran: Please know that even though your seizure meds make you a bit nutty, it is OKAY to sleep for more than five hours at night.
Not only that, it is okay to fall asleep BEFORE midnight.
It is okay to sleep in past the first glimpse of sunrise.
And, it is okay to take more than one half hour nap a day.
Love, Mommy and Daddy
Sheesh. Don't you know that you're still a baby, even though you're on 'roids???
Oh, and Happy 4th of July to all.
Not Ryan...
Not the dogs...
CAMERAN!!!!!!!!!!!!!
Note to Cameran: Please know that even though your seizure meds make you a bit nutty, it is OKAY to sleep for more than five hours at night.
Not only that, it is okay to fall asleep BEFORE midnight.
It is okay to sleep in past the first glimpse of sunrise.
And, it is okay to take more than one half hour nap a day.
Love, Mommy and Daddy
Sheesh. Don't you know that you're still a baby, even though you're on 'roids???
Oh, and Happy 4th of July to all.
Thursday, June 24, 2010
Brave Little Miss Peanut (aka-The long, somewhat dull seizure post)
Miss Cameran is proving to be quite the All-Star when it comes to receiving her daily steroid injections. Some days she does not even cry. I never knew it to be possible, but I think my little 15 month old baby is now in my top five list of heroes. She is so brave and so strong to go through the amount of doctor visits and poking and prodding and therapy that she endures on a weekly basis.
I never really recorded this whole seizure journey yet and since I had one too many cups o' joe today and am still awake at 1:00 am (which I am going to completely and totally regret at 6:00 when Cameran is up and at 'em) I may as well begin...
When we began PT (probably sometime in early March) the woman we were "assigned" came and did two initial consults, knowing we would be picking up full-time PT to get Cami movin and groovin on her development. On the second consult I had noticed that Cameran was "hiccuping", which often times resulted in what Ryan and I would call "head butts" to the person holding her. The PT looked at me strangely, and announced that these were most definitely not hiccups, as they were occuring in isolation and in erratic intervals. Basically she was the one who mentioned they might be "drop seizures" and to let the pediatrician know.
Luckily by this time her 12 month check up was right around the corner. For the next week or so we, along with daycare, attempted to chart where and when she would have these "episodes". Of course, when her appointment came along she did not have any head drops at the office. However, knowing how my anxiety gets with Cameran's medical needs, her pediatrician did not make us video tape them, and told us to immediately go to a pediatric neurologist.
Long story short, we went to the neurologist for a consultation on March 30th. For an hour we sat and discussed Cameran's espisodes with Dr. K. Naturally, Cameran played opposum and did not have any episodes at that appointment either. I came prepared though, and had recorded two that occured within a minute of each other while Cameran was in her high chair eating. She agreed that they looked like "infantile spasm seizures" and that we needed to get an EEG scheduled and medicines decided.
To anyone who may go through a similar situation with a child or loved one--DO NOT PRETEND YOU ARE DOCTOR GOOGLE--all that results is unneccesary worry and a lot of extraneous stress. We did this and read words like "catastrophic" and "mild to severe delays". Super. Our child already has delays from having T21, let's add a few more ailments. So again, do. not. google. diagnoses. EVER.
Because of our work schedules we did not begin with the most aggressive treatment (ACTHar steroid shots that we would need to stay home with her for increased infection/sickness risks), but instead opted for a broad spectrum seizure pill which many migraine sufferers know to also use called Topomax. We saw less spasms, but it did not rid them totally, so we increased the dosage. This seemed to help and they decreased still, but seriously, sprinkling 8 pills into a baby's food is no good, especially when it is not 100% working and the neurologist wanted to increase the dosage more. Her second EEG on May 3rd showed no seizure activity, but irregular brain patterns and we were still seeing an occasional seizure when she would wake up.
The good news came on May 17th when we saw Dr. K for Cameran's MRI results. The previous Friday Cami had to be put under (and they stuck my brave little girl three times before getting the IV in) to get an MRI to see if her brain was developing correctly and to possibly see if there were any areas that may have been the source of her infantile spasms. EVERYTHING CAME BACK NORMAL!!! What a relief! As far as we know this means that these seizures have not caused any further impairment, other than delaying her progress during the 6-7 months we thought she was "hiccuping". (What baby would want to try to push off the ground knowing every 2-3 minutes it is going to involuntarily flop forward??!!)
We made the decision to begin the paperwork for the ACTHar steroid shots at the end of May.
Finally, on Tuesday, June 8th after a few miscommunications from the home nursing agency and the neurologist we began injections. By that Friday I sucked it up and began administering them myself...Ya see, originally Ryan and I decided we were going to utilize as much homecare nursing as insurance would provide. Neither of us wanted to job our poor baby with a needle filled with syrupy goop. Then the nurse from hell came and that changed everything. The Reader's Digest version is she smelled like an ashtray, didnt wear gloves, didnt wash her hands, had long nasty yellow fingernails, didnt teach me diddley squat AND when she gave Cami the shot she lost her grip and let a 3/4 inch needle dangle from the top of my girl's thigh muscle. This Mama was not a happy camper. I hate conflict, but you better believe I called the next day to complain about that chick. Bonkers.
The subsequent nurses were great, and on Friday I was encouraged enough to just conquer my fear and learn how to administer the shot. (I mean, come on--I am a teacher, right? Shouldn't I be able to figure this out??)
Cameran slept almost non-stop the first few days she was on the shots. She still was/is receiving her 8 Topomax pills as well. She was grumpy when she was awake, and still had a few seizures limited to when she was waking up.
By the end of the weekend though, she was back to herself. She even began showing more interest in her toys, and began pushing herself up like a champ. She sat up for insanely long periods of time, and even removed stacking stars from the pyramid-like toy! We think she says "Hi" when you say it first, although it sounds more like "Ha-ah" In any case, she is doing amazing new things. And her eye contact---what was once almost non-existent is now frequent and purposeful. And she smiles--can't actually capture any good ones, but she smiles. A LOT. Did I mention she eats like a horse and doesn't sleep??? Like really really doesn't sleep. As in she doesn't nap kind of doesn't sleep....sigh...for the good of the cause ;)
I never really recorded this whole seizure journey yet and since I had one too many cups o' joe today and am still awake at 1:00 am (which I am going to completely and totally regret at 6:00 when Cameran is up and at 'em) I may as well begin...
When we began PT (probably sometime in early March) the woman we were "assigned" came and did two initial consults, knowing we would be picking up full-time PT to get Cami movin and groovin on her development. On the second consult I had noticed that Cameran was "hiccuping", which often times resulted in what Ryan and I would call "head butts" to the person holding her. The PT looked at me strangely, and announced that these were most definitely not hiccups, as they were occuring in isolation and in erratic intervals. Basically she was the one who mentioned they might be "drop seizures" and to let the pediatrician know.
Luckily by this time her 12 month check up was right around the corner. For the next week or so we, along with daycare, attempted to chart where and when she would have these "episodes". Of course, when her appointment came along she did not have any head drops at the office. However, knowing how my anxiety gets with Cameran's medical needs, her pediatrician did not make us video tape them, and told us to immediately go to a pediatric neurologist.
Long story short, we went to the neurologist for a consultation on March 30th. For an hour we sat and discussed Cameran's espisodes with Dr. K. Naturally, Cameran played opposum and did not have any episodes at that appointment either. I came prepared though, and had recorded two that occured within a minute of each other while Cameran was in her high chair eating. She agreed that they looked like "infantile spasm seizures" and that we needed to get an EEG scheduled and medicines decided.
To anyone who may go through a similar situation with a child or loved one--DO NOT PRETEND YOU ARE DOCTOR GOOGLE--all that results is unneccesary worry and a lot of extraneous stress. We did this and read words like "catastrophic" and "mild to severe delays". Super. Our child already has delays from having T21, let's add a few more ailments. So again, do. not. google. diagnoses. EVER.
Because of our work schedules we did not begin with the most aggressive treatment (ACTHar steroid shots that we would need to stay home with her for increased infection/sickness risks), but instead opted for a broad spectrum seizure pill which many migraine sufferers know to also use called Topomax. We saw less spasms, but it did not rid them totally, so we increased the dosage. This seemed to help and they decreased still, but seriously, sprinkling 8 pills into a baby's food is no good, especially when it is not 100% working and the neurologist wanted to increase the dosage more. Her second EEG on May 3rd showed no seizure activity, but irregular brain patterns and we were still seeing an occasional seizure when she would wake up.
The good news came on May 17th when we saw Dr. K for Cameran's MRI results. The previous Friday Cami had to be put under (and they stuck my brave little girl three times before getting the IV in) to get an MRI to see if her brain was developing correctly and to possibly see if there were any areas that may have been the source of her infantile spasms. EVERYTHING CAME BACK NORMAL!!! What a relief! As far as we know this means that these seizures have not caused any further impairment, other than delaying her progress during the 6-7 months we thought she was "hiccuping". (What baby would want to try to push off the ground knowing every 2-3 minutes it is going to involuntarily flop forward??!!)
We made the decision to begin the paperwork for the ACTHar steroid shots at the end of May.
Finally, on Tuesday, June 8th after a few miscommunications from the home nursing agency and the neurologist we began injections. By that Friday I sucked it up and began administering them myself...Ya see, originally Ryan and I decided we were going to utilize as much homecare nursing as insurance would provide. Neither of us wanted to job our poor baby with a needle filled with syrupy goop. Then the nurse from hell came and that changed everything. The Reader's Digest version is she smelled like an ashtray, didnt wear gloves, didnt wash her hands, had long nasty yellow fingernails, didnt teach me diddley squat AND when she gave Cami the shot she lost her grip and let a 3/4 inch needle dangle from the top of my girl's thigh muscle. This Mama was not a happy camper. I hate conflict, but you better believe I called the next day to complain about that chick. Bonkers.
The subsequent nurses were great, and on Friday I was encouraged enough to just conquer my fear and learn how to administer the shot. (I mean, come on--I am a teacher, right? Shouldn't I be able to figure this out??)
Cameran slept almost non-stop the first few days she was on the shots. She still was/is receiving her 8 Topomax pills as well. She was grumpy when she was awake, and still had a few seizures limited to when she was waking up.
By the end of the weekend though, she was back to herself. She even began showing more interest in her toys, and began pushing herself up like a champ. She sat up for insanely long periods of time, and even removed stacking stars from the pyramid-like toy! We think she says "Hi" when you say it first, although it sounds more like "Ha-ah" In any case, she is doing amazing new things. And her eye contact---what was once almost non-existent is now frequent and purposeful. And she smiles--can't actually capture any good ones, but she smiles. A LOT. Did I mention she eats like a horse and doesn't sleep??? Like really really doesn't sleep. As in she doesn't nap kind of doesn't sleep....sigh...for the good of the cause ;)
Tuesday, May 4, 2010
ABC, 123, EEG
Yesterday was Cameran's second EEG. She is such a little trooper. I wish I had taken a picture of her with all of her spork-like electrical wires taped and glued to her tiny little head. She fell asleep almost instantly, and for 20 minutes Ryan and I sat and waited while the EEG tech did her thing. Flashforward to the appointment a few hours later.
WOO HOO!!!
WOO HOO!!!
Her EEG showed improvement! This time around there was no seizure activity during the EEG, however, it still showed abnormal brain activity. Soooooooo, Cameran is now slowly increasing her amount of Topamax to double what she is currently taking. Hopefully by the time she has her MRI she will be seizure free. If not, we are opting to take the aggressive approach of ACTH steroid therapy.
Day by day. We will get through this. Cameran is one tough cookie. Go away seizure. Don't come back!
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