This video is her typical spasm and the one Charlie does the most. I am pretty sure the video is only about a minute long but her clusters typically last about 5 minutes. Also, the hiccups aren't part of the cluster, just a coincidence.
Saturday, January 29, 2011
Charlie Claire's Spasms
A lot of people have asked what it looks like when Charlie Claire has her spasms. I was reluctant at first to put up the video but I guess if we are sharing all of this information with everyone we should just go big or go home...so here it is.
This video is her typical spasm and the one Charlie does the most. I am pretty sure the video is only about a minute long but her clusters typically last about 5 minutes. Also, the hiccups aren't part of the cluster, just a coincidence.
This video is her typical spasm and the one Charlie does the most. I am pretty sure the video is only about a minute long but her clusters typically last about 5 minutes. Also, the hiccups aren't part of the cluster, just a coincidence.
Friday, January 28, 2011
MCV
When you go to ODU it doesn't take long for you to learn that VCU is not your friend. In case you didn't know - Rams and Monarchs don't get along! This was a hurdle for us when we were first told about MCV which is part of VCU! :) Well...it looks like we might be crossing over to the dark side! We were extremely pleased with our visit today!!
We met with the neurologist (who is an epilepsy specialist), a women doing her fellowship under the neurologist and the surgeon. They all had a lot of good things to say about Charlie Claire, were very optimistic about her and had a very aggressive game plan. We felt really comfortable with this team and their concern about C, her well being and doing everything as soon as possible so she has the best outcome possible in the long run.
Our hopes are to get Charlie to 6 months before operating which is 8 weeks from now. If we need to do it sooner we could but it would be best for us to make it the 8 weeks. We are taking Charlie for an EEG on Monday morning to try and determine if the steroids are working. If they appear to be she will stay on the steroids a little while longer, if they aren't working we will start the weaning process. If they do not appear to be working there is one other medication we can try -- they are basically just trying to keep things as calm as possible in her little brain until we can get to surgery.
While Jason, C, Grammy TC and I were taking care of all that today Jackson again enjoyed his day! Toni Ann hung out with him bright and early this morning, Aunt T picked him and took him to the nail salon to visit Aunt Anna. Word on the street is that Jax is quite the ladies man and was eating up all the attention in the salon! He also got to visit with Nicole, Caitlin and Kyle - good thing he got some man time in there!
Also, our photographer, Jessie Smith, continues to amaze me with the awesome photos she takes of Jackson and Charlie! C was having a rough day and you would never know it by the looks of these pictures! Check out how stinkin' cute our babies are!
We met with the neurologist (who is an epilepsy specialist), a women doing her fellowship under the neurologist and the surgeon. They all had a lot of good things to say about Charlie Claire, were very optimistic about her and had a very aggressive game plan. We felt really comfortable with this team and their concern about C, her well being and doing everything as soon as possible so she has the best outcome possible in the long run.
Our hopes are to get Charlie to 6 months before operating which is 8 weeks from now. If we need to do it sooner we could but it would be best for us to make it the 8 weeks. We are taking Charlie for an EEG on Monday morning to try and determine if the steroids are working. If they appear to be she will stay on the steroids a little while longer, if they aren't working we will start the weaning process. If they do not appear to be working there is one other medication we can try -- they are basically just trying to keep things as calm as possible in her little brain until we can get to surgery.
While Jason, C, Grammy TC and I were taking care of all that today Jackson again enjoyed his day! Toni Ann hung out with him bright and early this morning, Aunt T picked him and took him to the nail salon to visit Aunt Anna. Word on the street is that Jax is quite the ladies man and was eating up all the attention in the salon! He also got to visit with Nicole, Caitlin and Kyle - good thing he got some man time in there!
Also, our photographer, Jessie Smith, continues to amaze me with the awesome photos she takes of Jackson and Charlie! C was having a rough day and you would never know it by the looks of these pictures! Check out how stinkin' cute our babies are!
Thursday, January 27, 2011
Project Steroid
Dear Steroids: Please start working, thanks! Love: The North Family
So, one week down on steroids and we still have not noticed any change whatsoever in Charlie's spasms. While we are trying to remain hopeful it is getting harder with each passing day. I keep telling myself that maybe they needed a full week to get into C's system and any minute now things are going to get better!
A couple things that are making life a tad more difficult right now...
#1 Jackson has his first cold :( We have been trying to keep Charlie Claire away from sick people because the steroids weaken her immune system and go figure Jackson, the one who is around her all the time, is sick. He has been a little more fussy than normal but for the most part he is handling it like a champ!
Please, please, please say LOTS of prayers that these steroids kick in. If they do it will buy us some time before surgery which would be really nice.
One last thing: Jackson would like to thank Aunt T for the snuggles last night!
So, one week down on steroids and we still have not noticed any change whatsoever in Charlie's spasms. While we are trying to remain hopeful it is getting harder with each passing day. I keep telling myself that maybe they needed a full week to get into C's system and any minute now things are going to get better!
A couple things that are making life a tad more difficult right now...
#1 Jackson has his first cold :( We have been trying to keep Charlie Claire away from sick people because the steroids weaken her immune system and go figure Jackson, the one who is around her all the time, is sick. He has been a little more fussy than normal but for the most part he is handling it like a champ!
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| CC rocking out some serious zz's yesterday afternoon! |
#2 C's sleep schedule is all off so she is sleeping a lot during the day and waking up around 2am and staying up!
#3 We have a moody girl on our hands from about 5pm-9pm. Typically during CC's clusters she laughs and smiles but for some reason after her 4/4:30ish bottle she will usually have a cluster right after finishing and it just sets her off and pretty much for the rest of the night she is fussy but gets hysterical during/after each cluster. It seems that just as you are getting her calm she will have another one and you have to start all over again. This is super out of character for Charlie Claire -- it's hard to say if this is just a fussy time for her or if this is directly related to the steroids. I guess we will find out when she stops the steroids. (Thank you Aunt Anna and Aunt Theresa for giving me a hand last night so I could love on Jackson and get some cleaning done!) Please, please, please say LOTS of prayers that these steroids kick in. If they do it will buy us some time before surgery which would be really nice.
One last thing: Jackson would like to thank Aunt T for the snuggles last night!
Tuesday, January 25, 2011
Hi Ho Hi Ho it's off to Richmond we go...
Whew, it's been a busy day...
We found out the other day that there is a hospital in our network that can potentially perform the surgery that Charlie Claire needs to have. It is MCV in Richmond, they are part of VCU.
Our insurance is requiring us to go there for a second opinion before they would give us the green light to go to Hopkins since it's out of network. We now have a case manager through our insurance company who is super nice and she is helping us navigate this whole insurance thing. We researched the dr at MCV and they are actually a really great hospital so we might get up there and be pleasantly surprised!
Charlie Claire has an appointment at MCV on Friday morning at 9 with the neurologist and at 10:30 with the neurosurgeon.
So, our day has been spent calling the EEG lab and requesting those discs, calling the MRI lab and requesting that scan, on the phone with MCV getting everything squared away for Friday, having paper work faxed to Aunt Gina's office (THANKS AUNT GINA!!) and arranging care for Jackson on Friday (THANKS TONI ANN & AUNT THERESA!!)
We found out the other day that there is a hospital in our network that can potentially perform the surgery that Charlie Claire needs to have. It is MCV in Richmond, they are part of VCU.
Our insurance is requiring us to go there for a second opinion before they would give us the green light to go to Hopkins since it's out of network. We now have a case manager through our insurance company who is super nice and she is helping us navigate this whole insurance thing. We researched the dr at MCV and they are actually a really great hospital so we might get up there and be pleasantly surprised!
Charlie Claire has an appointment at MCV on Friday morning at 9 with the neurologist and at 10:30 with the neurosurgeon.
So, our day has been spent calling the EEG lab and requesting those discs, calling the MRI lab and requesting that scan, on the phone with MCV getting everything squared away for Friday, having paper work faxed to Aunt Gina's office (THANKS AUNT GINA!!) and arranging care for Jackson on Friday (THANKS TONI ANN & AUNT THERESA!!)
Monday, January 24, 2011
Steroid Update...
Do things get worse before they get better? Possibly...
We have been documenting every cluster that Charlie has every day and she seemed to be having them every 30-40 minutes while she would be awake. Since starting the steroid she seems to have her clusters every 15-20 minutes now. Extremely frustrating since we were hoping to see an IMPROVEMENT in things. We called Dr. White (CHKD neuro) and emailed Dr. Kossoff (Hopkins neuro) and they decided to go ahead and increase her dose of the steroid today instead of waiting until Thursday to do so. Dr. White said it's not completely uncommon to see things get a bit worse before they start to get better so please say lots of prayers that this is the case with Charlie Claire! Dr. White said she is just being a tad stubborn, I wonder who she gets that from?!! Her fussiness has seemed to kick in :( She is either super duper happy or super duper unhappy. We have an appointment with Dr. White on Thursday just to check her out and go over our game plan with meds.
On a lighter note: Charlie Claire's physical therapist came today! I was super nervous about this appointment since the last month has been touch and go with her exercise sessions. Her clusters make it very hard to do her exercises and sometimes following big clusters she falls asleep. Even with all that going on she is doing almost everything a normal 3 1/2 month old baby should be doing!! :) The only thing we are having an issue with is her vision - she isn't tracking objects yet or reaching for her toys but she is getting much better at focusing on people and objects. Vision services is going to start coming out and working with Charlie but the therapist today said we might need see a big difference until after her surgery.
Ok, Jackson is upstairs sleeping and C is sleeping on Grammy TC so Mama Bear is off to bed!
We have been documenting every cluster that Charlie has every day and she seemed to be having them every 30-40 minutes while she would be awake. Since starting the steroid she seems to have her clusters every 15-20 minutes now. Extremely frustrating since we were hoping to see an IMPROVEMENT in things. We called Dr. White (CHKD neuro) and emailed Dr. Kossoff (Hopkins neuro) and they decided to go ahead and increase her dose of the steroid today instead of waiting until Thursday to do so. Dr. White said it's not completely uncommon to see things get a bit worse before they start to get better so please say lots of prayers that this is the case with Charlie Claire! Dr. White said she is just being a tad stubborn, I wonder who she gets that from?!! Her fussiness has seemed to kick in :( She is either super duper happy or super duper unhappy. We have an appointment with Dr. White on Thursday just to check her out and go over our game plan with meds.
On a lighter note: Charlie Claire's physical therapist came today! I was super nervous about this appointment since the last month has been touch and go with her exercise sessions. Her clusters make it very hard to do her exercises and sometimes following big clusters she falls asleep. Even with all that going on she is doing almost everything a normal 3 1/2 month old baby should be doing!! :) The only thing we are having an issue with is her vision - she isn't tracking objects yet or reaching for her toys but she is getting much better at focusing on people and objects. Vision services is going to start coming out and working with Charlie but the therapist today said we might need see a big difference until after her surgery.
Ok, Jackson is upstairs sleeping and C is sleeping on Grammy TC so Mama Bear is off to bed!
Friday, January 21, 2011
Steroids Day 2!
Now that we are home and settled I thought I would give a quick update!
Charlie Claire was a ROCK STAR on her first road trip! She settled in quite nicely to the hotel life!
She enjoyed the bed, the big bath tub and having Mommy all to herself! Charlie Claire did great in the car and was super happy to get home to Jackson!
Jackson also had fun during his time as an only child! He got to hang out with Nicole, Caitlin, Aunt T, Toni Ann, Mimi, Papa Jim Jim, Aunt Nicole, Hope and Lucy! Aunt T took him all around town and he certainly enjoyed being the center of attention!
So, now onto medical stuff! C started her steroid Wednesday night and so far we haven't noticed any fussiness - fingers crossed it stays like this! She went to the dr this morning for a blood pressure check because the steroids can make her retain water - everything looked normal this morning. We have been keeping count of her clusters and can't say we have noticed a big difference yet but it still may just be too early to tell. We are all praying these steroids do what they need to do.
If you are anything like us you may have done some research on infantile spasms and we know that the internet doesn't paint a pretty picture of what is going on. What we need to focus on are the positive things right now -
1: C is AWESOME!
2: we caught the spasms fairly quickly and now just need to stop them quickly
3: Her spasms are coming from one localized area and not affecting her entire brain
4: We are seeing great doctors
5: She has SO MANY people that LOVE her!
So, while the infantile spasms aren't so great we have some good things on our side and we all are feeling really positive about the long term for Charlie!
Charlie Claire was a ROCK STAR on her first road trip! She settled in quite nicely to the hotel life!
Jackson also had fun during his time as an only child! He got to hang out with Nicole, Caitlin, Aunt T, Toni Ann, Mimi, Papa Jim Jim, Aunt Nicole, Hope and Lucy! Aunt T took him all around town and he certainly enjoyed being the center of attention!
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| Talking to Nicole! |
If you are anything like us you may have done some research on infantile spasms and we know that the internet doesn't paint a pretty picture of what is going on. What we need to focus on are the positive things right now -
1: C is AWESOME!
2: we caught the spasms fairly quickly and now just need to stop them quickly
3: Her spasms are coming from one localized area and not affecting her entire brain
4: We are seeing great doctors
5: She has SO MANY people that LOVE her!
So, while the infantile spasms aren't so great we have some good things on our side and we all are feeling really positive about the long term for Charlie!
Wednesday, January 19, 2011
Hopkins Update
Ok...so here is the deal. Charlie Claire is having infantile spasms which are not so good, we most certainly want to stop them as soon as possible. There are about 3 things that could work in stopping them...1-ketogenic diet which this dr thinks she has been having them for too long for the diet to work 2- steroids- this has about a 70% chance of working but there are side effects (bloating, irritable, etc) 3-another drug which I can't remember but that causes some serious vision issues so we are going to wait on that. We are starting the steroids tomorrow. If there is no improvement in 2 weeks then we will basically be buying our time till surgery. When I say improvement the spasms need to stop - right now she is having about 24 clusters a day an each cluster has about 10-28 spasms. So even if it drops down to only 3 a day that still isn't good enough.
Surgery...they would like her to make it to about 6 months old before the surgery. Since she will still more than likely be having the subclinical seizures she will most likely need the surgery even if the steroid stops the spasms.
It appears that there is a little part (an 1/8) of her brain that didn't form properly and that is where the seizures are coming from. The good news is the rest of her brain looks perfect! The motor strip on the left side of her brain shouldn't be affected and therefore she will have good use of the right side of her body. The main issue will be the vision--the right side of each eye will be affected.
I'm submitting this post through a text message so I apologize if this is a hot mess but if I missed anything I'll add more later!
We are on the road heading back to VA so we can give Jackson lots of kisses.
Surgery...they would like her to make it to about 6 months old before the surgery. Since she will still more than likely be having the subclinical seizures she will most likely need the surgery even if the steroid stops the spasms.
It appears that there is a little part (an 1/8) of her brain that didn't form properly and that is where the seizures are coming from. The good news is the rest of her brain looks perfect! The motor strip on the left side of her brain shouldn't be affected and therefore she will have good use of the right side of her body. The main issue will be the vision--the right side of each eye will be affected.
I'm submitting this post through a text message so I apologize if this is a hot mess but if I missed anything I'll add more later!
We are on the road heading back to VA so we can give Jackson lots of kisses.
Tuesday, January 18, 2011
We are going on a road trip...!
Can you tell how excited she seems for her first road trip?! About to hit the road and head up to Baltimore!
Saturday, January 15, 2011
Welcome to Charlie's Page!
Well hello everyone!
With everything going on these days with Miss Charlie Claire I thought it would be good to start a page so that everyone knows where to go to get the latest and greatest news.
Just in case anyone doesn't know yet, the results of Charlie's EEG the other day weren't too hot. We were hoping to see an improvement as we have been increasing her level of Tegretol but that was not the case. On top of the sub clinical seizures (seizures that don't show any outward signs), C has started having clinical seizures (seizures that do show outward signs). We have started her on another new medication (clonazepam) to see if this can control the clinical seizures that have started.
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| C's EEG on 1.11.11 |
We will be heading up to Johns Hopkins on Wednesday the 19th to meet with a neurologist to see what the next steps for Charlie should be. Will keep you posted on what they have to say about our little girl.
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