It's been quite a couple of weeks. I've been mulling over the idea of Epilepsy for a while and have come to a conclusion: It sucks. It's scary. I hate Epilepsy. However, I will not let it hold PP behind. I will do everything imaginable to keep PP ahead of Epilepsy! With that said, today we found out that PP pretty much has Epilepsy. I say pretty much because it was a rushed process, but I didn't need much convincing of what I already knew. The Neuro Doc only got 15 minutes of data, but it was enough. We will be back in a week to discuss the results in more detail. Since the day Doc McLellan put the bug in my ear I have been watching PP like a hawk. Every move that seemed out of place turned into 'AAAHH seizure!!!' which can be annoying! I wasn't able to film anything as instructed; it turns out that filming someone having a seizure when you're alone is really freaking hard and nearly impossible. I was able to see some key differences in PP's daily motions that helped me explain in detail the type of seizure PP has to the Neuro Doc. So when he listened to me explain the seizure, he knew what he already saw on the EEG results, and he instructed us to start PP on anti-seizure medication starting immediately. Pretty much Epilepsy.
Phew. What a relief! I mean, what?
The past two weeks have been oddly therapeutic. I've been stressed and cranky, but my nervous energy has forced me to clean and organize almost every inch of my house. Yay! PP and I have been so very busy, I hardly had time to worry. Double yay! I feel really proud of my family, we coped with only allowing ourselves 4 1/2 hours of sleep very well. Coffee was involved! It also feels good to finally have some answers. It feels like a weight lifted off of my chest. I feel like we finally got a solid step in the right direction. Quintuple yay!
It's not so bad. I am sitting right next to PP, and she's the same little girl I've always known. Even after being sleep deprived beyond belief, having to tolerate some very unfavorable conditions while being coaxed to sleep (FAIL) in a doctors office, then having a large Hungarian Neurologist stamp another line on her record, she just wants to sit next to me and tickle my leg with her monkey toes. I really feel like eliminating seizure activity will be a positive thing for our family. I'll only have to remember new medication information and to update PP's medical information, which is cake.
PP will be starting Pre-school in about two months. I feel much more at ease with this transition because of her new diagnosis. I won't have to worry about someone misunderstanding her 'outbursts' as tantrums, nor will I have to worry about her hurting other people during one of her seizures. Although it is an uncommon type of seizure, when you say Epilepsy to someone, they generally know what you are talking about. This is a new thing to me...Momma likey! I get tired of having to explain everything about Weaver Syndrome, sometimes I think I should make PP some business cards! Haha! Now I can just say, "Hey stranger, it's Epilepsy. Don't be a hater." and the light bulb will switch! Huzzah!
I'd have to say that this was a darn good Friday. I hope everyones day starts off good, and ends better!
Peace and love
XoX
Momma Lace thinks her little bug is SO cool, she wants to tell the world about it! Penelope has a rare genetic disorder, Weaver Syndrome, which makes life a bit different for her family...here's our story!
Friday, September 28, 2012
Tuesday, September 11, 2012
Water Balloon
I swear if PP doesn't have Epilepsy I'm going to kick someone...then kiss them.
Ever since the Doc McLellan put the bug in my ear about Gelastic Seizures I've been an obsessive and moody Momma. Can you blame me? I have been Googling the SHIT out of Gelastic Seizures trying desperately to get a better understanding of it and all I can say is that this condition is rare and the YouTube videos make me feel...weird. Weaver Syndrome is rare enough on it's own, but chronic giggle seizures?! SERIOUSLY?!
It's hilariously infuriating.
It can become a bigger issue and is not curable or very responsive to treatment, but it explains a long list of noodle scratchers that I shrug off on a daily basis. Epilepsy initially seems like a long shot for a diagnosis, but it can cause behavior problems, memory loss, and developmental delay in all areas. PP recently took a step backwards in the area of speech development and she has angry/laughing outbursts that can come from nowhere. However, she is making her way back developmentally to where she was about a month ago and I've been trying to reduce daily stressors that can trigger a seizure. Still, I feel like a drunk with a barrel of apple juice. Pissed off and ready to throw things. Motherhood is making me crazy!
I forgot to mention in my last post that I was advised to film PP having a 'seizure' to make the diagnostic process go smoother. How nice. Neither myself nor anyone I know has heard of Gelatsic Epilepsy. Explain to me once more how I am supposed to discern a laughing seizure from just laughing at a hysterical Momma Lace? The only conclusion I can come to is to constantly film PP doing her thing. Sadly, my phone only holds about 10 minutes of video because I have massive amounts of useless crap and really cute pictures on my phone. Do I really have to re-organize my phone and, consequently, my entire life? Hmm. Hello anxiety, be nice to me. I'm getting old.
There are moments in the day when I feel like I'm caught in a water balloon fight. Most of the time I'm nice and dry, keeping the brave face on that everyone likes to look at. I do like brave face the best. Then PP's beautiful hazel eyes will look at me and literally knock the wind out of me. It's not fair to be so easily caught off guard. She is such an amazing girl and it just tears me up that I can't take away her owies. Did you ever throw water balloons at passing cars when you were a kid? I did. That biz was fun. These days, instead of laughing and chucking balloons without consequence, I'm bombarded by waves of rainbow balloons filled with PP beauty and awesomeness, soaked with a million thoughts leaving me insta-pissed. PP is none the wiser. She only sees lovey goofy Momma face.
The appointment for Neurology is tentatively scheduled in December.
XoX
Ever since the Doc McLellan put the bug in my ear about Gelastic Seizures I've been an obsessive and moody Momma. Can you blame me? I have been Googling the SHIT out of Gelastic Seizures trying desperately to get a better understanding of it and all I can say is that this condition is rare and the YouTube videos make me feel...weird. Weaver Syndrome is rare enough on it's own, but chronic giggle seizures?! SERIOUSLY?!
It's hilariously infuriating.
It can become a bigger issue and is not curable or very responsive to treatment, but it explains a long list of noodle scratchers that I shrug off on a daily basis. Epilepsy initially seems like a long shot for a diagnosis, but it can cause behavior problems, memory loss, and developmental delay in all areas. PP recently took a step backwards in the area of speech development and she has angry/laughing outbursts that can come from nowhere. However, she is making her way back developmentally to where she was about a month ago and I've been trying to reduce daily stressors that can trigger a seizure. Still, I feel like a drunk with a barrel of apple juice. Pissed off and ready to throw things. Motherhood is making me crazy!
I forgot to mention in my last post that I was advised to film PP having a 'seizure' to make the diagnostic process go smoother. How nice. Neither myself nor anyone I know has heard of Gelatsic Epilepsy. Explain to me once more how I am supposed to discern a laughing seizure from just laughing at a hysterical Momma Lace? The only conclusion I can come to is to constantly film PP doing her thing. Sadly, my phone only holds about 10 minutes of video because I have massive amounts of useless crap and really cute pictures on my phone. Do I really have to re-organize my phone and, consequently, my entire life? Hmm. Hello anxiety, be nice to me. I'm getting old.
There are moments in the day when I feel like I'm caught in a water balloon fight. Most of the time I'm nice and dry, keeping the brave face on that everyone likes to look at. I do like brave face the best. Then PP's beautiful hazel eyes will look at me and literally knock the wind out of me. It's not fair to be so easily caught off guard. She is such an amazing girl and it just tears me up that I can't take away her owies. Did you ever throw water balloons at passing cars when you were a kid? I did. That biz was fun. These days, instead of laughing and chucking balloons without consequence, I'm bombarded by waves of rainbow balloons filled with PP beauty and awesomeness, soaked with a million thoughts leaving me insta-pissed. PP is none the wiser. She only sees lovey goofy Momma face.
The appointment for Neurology is tentatively scheduled in December.
XoX
Friday, September 7, 2012
What's next?!
Today marked the true end of Summer for PP. The weather is sweater-worthy and we began our busy weekly schedule. I've been yawning a lot today.
Oh, it's also Friday? Thank goodness.
Friday means we had a very important appointment today. Friday means that there are only two days until Monday. Friday means 4-5 days left until we get PP's glasses back. The most exciting thing while thinking about Friday is Saturday, because PP and I will go to a Fall Festival in the community! There will be a petting zoo and live music, among other things. It's just a hop skip away from our house so there's no pressure for time, food or supplies!
PP's famous pink glasses went out of commission on Wednesday this past week. I couldn't stand the gouges and scratches that always end up in the very center of her lenses! Sadly the optical store was not able to do a quicker turn around time than 4-5 business days, considering the extra special-ness of the glasses, so PP will just have to make due with horribly blurred vision for the time being. The absence of glasses is a welcome change to PP because I no longer can scold her for taking off her glasses to put on various other types of glasses; she just wears a million pairs in a day now! I felt like it was a good time to get those goggles fixed up anyways. PP saw the eye doctor last week and he discontinued the daily eye patching regimen! I was very happy to hear this because not only am I able to throw away the stupid eye patches, but the glasses alone are making a positive change in PP's vision. She never, ever let me put the patch on her eye without a fight anyways!
On Monday PP has an appointment to see her orthotist. She will most likely get new braces for her feet. She might be ready for a simple sole insert! The orthotic braces have made a huge, positive impact on PP's ability to walk and I love them especially because they have a dinosaur pattern! This appointment is wedged in between two therapy appointments at Children's Hospital, thus marking the start of tri-appointment days! We will run into a FULL day of appointments about once a week from here on out.
Cue insanity, wish for a bottomless cup of black coffee and a cigarette.
Today was a big day. PP had her first follow up with Developmental Pediatrics. After her first appointment with Dr. McLellan, we started the cocktail of therapies through Children's Hospital. I was anxious to see what the Doc would say now, but I didn't think it would be more than just a pat on the back and an order to carry on. As it turns out, the Speech Therapist at Children's works alongside Dr. Mclellan on a weekly basis and PP is often the topic of conversation. PP has both the ST and Doc stumped in terms of how to deal with some of PP's issues. The ST told Doc about a weird characteristic of PP: it's hard to tell if PP is crying or laughing sometimes during the day. If she experiences a strong emotion she doesn't seem to know how to express it so she laughs and cries at the same time. This characteristic put up a flag for the ST because she had never seen a child behave like that before. Speech is the hardest thing for PP to practice, so the ST sees a lot of this weird behavior and how confusing it can be from an adult point of view. Personally, I would call it a "tick" for lack of a better explanation, but Doc had a different idea. Doc referred us to the head neurologist at Children's Hospital in St. Paul because he wants Neuro Doc to rule out the possibility of Gelastic Seizure in PP. I was a bit skeptical of this possibility for PP, but as I searched YouTube for videos of gelastic seizures I feel certain that PP has this type of Epilepsy. I felt like I was watching a video of PP when I came across this video in particular. The possibility of Epilepsy strikes a few raw emotions in me, but I am trying to stay positive.
With that said, I need a drink (of wine). I have a bonfire waiting outside and it's a beautiful evening.
Good vibes and long drives
XoX
Oh, it's also Friday? Thank goodness.
Friday means we had a very important appointment today. Friday means that there are only two days until Monday. Friday means 4-5 days left until we get PP's glasses back. The most exciting thing while thinking about Friday is Saturday, because PP and I will go to a Fall Festival in the community! There will be a petting zoo and live music, among other things. It's just a hop skip away from our house so there's no pressure for time, food or supplies!
PP's famous pink glasses went out of commission on Wednesday this past week. I couldn't stand the gouges and scratches that always end up in the very center of her lenses! Sadly the optical store was not able to do a quicker turn around time than 4-5 business days, considering the extra special-ness of the glasses, so PP will just have to make due with horribly blurred vision for the time being. The absence of glasses is a welcome change to PP because I no longer can scold her for taking off her glasses to put on various other types of glasses; she just wears a million pairs in a day now! I felt like it was a good time to get those goggles fixed up anyways. PP saw the eye doctor last week and he discontinued the daily eye patching regimen! I was very happy to hear this because not only am I able to throw away the stupid eye patches, but the glasses alone are making a positive change in PP's vision. She never, ever let me put the patch on her eye without a fight anyways!
On Monday PP has an appointment to see her orthotist. She will most likely get new braces for her feet. She might be ready for a simple sole insert! The orthotic braces have made a huge, positive impact on PP's ability to walk and I love them especially because they have a dinosaur pattern! This appointment is wedged in between two therapy appointments at Children's Hospital, thus marking the start of tri-appointment days! We will run into a FULL day of appointments about once a week from here on out.
Cue insanity, wish for a bottomless cup of black coffee and a cigarette.
Today was a big day. PP had her first follow up with Developmental Pediatrics. After her first appointment with Dr. McLellan, we started the cocktail of therapies through Children's Hospital. I was anxious to see what the Doc would say now, but I didn't think it would be more than just a pat on the back and an order to carry on. As it turns out, the Speech Therapist at Children's works alongside Dr. Mclellan on a weekly basis and PP is often the topic of conversation. PP has both the ST and Doc stumped in terms of how to deal with some of PP's issues. The ST told Doc about a weird characteristic of PP: it's hard to tell if PP is crying or laughing sometimes during the day. If she experiences a strong emotion she doesn't seem to know how to express it so she laughs and cries at the same time. This characteristic put up a flag for the ST because she had never seen a child behave like that before. Speech is the hardest thing for PP to practice, so the ST sees a lot of this weird behavior and how confusing it can be from an adult point of view. Personally, I would call it a "tick" for lack of a better explanation, but Doc had a different idea. Doc referred us to the head neurologist at Children's Hospital in St. Paul because he wants Neuro Doc to rule out the possibility of Gelastic Seizure in PP. I was a bit skeptical of this possibility for PP, but as I searched YouTube for videos of gelastic seizures I feel certain that PP has this type of Epilepsy. I felt like I was watching a video of PP when I came across this video in particular. The possibility of Epilepsy strikes a few raw emotions in me, but I am trying to stay positive.
With that said, I need a drink (of wine). I have a bonfire waiting outside and it's a beautiful evening.
Good vibes and long drives
XoX
Monday, September 3, 2012
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