I Saw This One Coming...

As soon as Isabel walked through the door yesterday I said to Brian that I think a seizure is coming soon. The last few days she has been miserable. She also has been waking up shaking very badly, which has recently subsided a bit. Last night she cried non-stop from the minute she got home until the seizure started, why is that? I wish she could tell me. It really did come out of the blue. I turned away for just a minute and when I looked back she was already blue. I layed her down and her eyes rolled back in her head and she went unconcious. It lasted well over a minute. She went to sleep in my arms for awhile, it is so hard looking at her pale little body. Thankfully when she came to, she was back to herself again, just a little slower...happy as can be. The transformation was amazing. We kept her up for awhile to ensure that she didn't have another seizure.
I put a call into Dr. F today and am currently waiting to hear back. I know that he is going to want to increase or add another med. I really do not want to do that. She is honestly overmedicated as it is. I want to know the route of this. We still haven't figured out where these seizures are coming from yet! I know that she has epilepsy and seizures are a normal thing but no parent should have to watch their child go through this...it's just not fair.

Discrimination?

Isabel has been in the same daycare since she was twelve weeks old. The majority of the teachers there she knows and loves. Although the room she is in now I am less than happy with. I won't get into the details but lets just say that I did not want her in it for another 9+ months. We started looking for a new center for her a few months back and found one that we really loved. A spot finally opened this week and we jumped at the chance to get her in. I had spoke with someone from the center over the phone earlier this month about Isabel's epilepsy and they seemed like it was just fine. When I went in yesterday to pay her registration fee they acted as if I had never told them about it. They said that they would set up a meeting with her teachers and myself before she started so that they would feel comfortable, I thought all was well so I gave her old daycare center the one week notice. Today I get a call saying that they will NOT take Isabel unless we hire and pay for a full time nurse to stay with her. Excuse me?! If I had the money to hire a full time nurse I would be able to stay home and hence not need your stinking daycare. I told then that Isabel is fully functioning and does not require and addidional help unless she has a seizure. I would provide instructions on what to do if that happens and everyone in that building is CRP certified. Im mad to say the least...so mad for my little girl. I wanted to reach through the phone and grab the lady on the other ends shoulders and shake her and be like, "Do you know how long we have waited for this, you said she was fine? She is not severely disabled as you called her!!" You can bet that this is not the last time that they hear from me!

October Update

We were doing so good, two and a half months with out a seizure when out of the blue they started again. We were on vacation in the Outer banks at the aquarium when the first one came, we were expecting more because normally Isabel never just has one isolated seizure. Thankfully though, they stopped for the day. They next day she had three more. The following day, two more and so on for the rest of the week. She had a total of eight seizures throughout the course of our vacation. After speaking with her neurologist (Dr.F), he upped her Topamax so she is now on 45mg in the morning and 45mg at night along with 3.5mL of Keppra in the morning and at night. Thankfully she was seizure free Saturday and Sunday but she had two more on Monday so Dr. F squeezed us in for an appointment yesterday. He added yet another medicine to her regimen...Lacosamide. We are starting off on a low dose and slowly increasing the amount. I would really like to see her off of the Topamax because she is really staring to loose her appetite. She lost one pound in one and a half weeks. I know that doesn't seem like a lot but when your only 25lbs, it's quite a bit of weight! He would also like her and us to get a blood test to check and see if this is genetic or benign. He is beginning to believe that it is genetic which really makes me sad for Izzy. I know things could be a lot worse and I am in no way complaining, I just wish that I could make it go away. The blood test is not covered by insurance and runs around 1200$...yikes! He would also like to admit her to CHKD at some point to get a 3-4 day EEG. Dr. F is amazed that Isabel is not a zombie with all of the meds that she is on, in fact she is just the opposite, she is a nut! That girl has more energy than Caden half the time!
In other news speech therapy is going very well! She is making wonderful progress and we both love her therapist. Hopefully we can get these seizures under control and this new medicine will help her out a bit!

Isabel vs the Sprinkle Capsule

I don't know who's idea it was to give a one year old a capsule full of beads to take three times a day...Isabel is a smart cookie. She knows when you are trying to sneak medicine in even when it is disguised in her favorite food. We have tried mixing it with applesauce, yogurt, ice cream and frozen yogurt, to no avail. We eventually get it in her after a long and tedious fight. She ends up smacking our hand away from her mouth which in turn sends the spoon flying and the said food and medicine all over the floor/couch/bed etc etc. We have tried mixing the beads with juice to try to get them to dissolve so that we could put the medicine in a syringe, but just our luck, the beads do NOT dissolve (I'm assuming they are time realeased). Does anyone out there have any tips for me before me house becomes covered in dairy products?
In other news Isabel started speech therapy this past Monday and she seems to absolutely love it! The therapist has diagnosed her with dyspraxia and aphasia but is hopeful that with therapy and time she will be "just like all of the other kids." She has been waking up shaking very badly the past week or so and we are hoping that this is not a sign of an impending seizure. I have a few videos that I would like to post but have not yet figured out how to do so.
I'll leave you with a picture of Isabel and I...she is just too sweet. I can't get enough of her hugs and kisses!

Tegretol vs Topamax

So we started the Tegretol on the 6th after meeting with the doctor. Isabel seemed to be taking to it just fine, she actually loved the taste! Before she started the meds we noticed some bruising on her face, just normal toddler stuff but as the week progressed the bruises started to alarm me. They lightened a bit like they should but then they darkened again in the exact same spot, then lightened again, and darkened. I looked up the side effects of Tegretol and serious blood disorders was high on the list...so I thought a call to neuro was in order. They ordered a CBC which we had done right away and thankfully in true Izzy fashion she was quite the trooper through the whole ordeal. Afterwards I thought that I would treat her to lunch in the cafeteria and I am SO thankful that I did. She was happily eating her fruit loops when I looked down and noticed blood dripping down her arm and pooling on the chair. I quickly took the band aid off from where she got the blood drawn and applied pressure while we went back to the lab. She then proceeded to bleed through 2 more pads and band aids. After about 10 minutes and a lot of crying we got the bleeding to stop.
The office called  later that afternoon with the results and thankfully the CBC was normal but they wanted her to stop the Tegretol immediately due to the clotting issues.
So now we start the Topamax and what I don't like about this already is that it comes in sprinkle capsules...which are really just little beads. How the heck am I supposed to get her to take this?? They don't dissolve in liquids and my daughter can definitely tell when I am trying to sneak medicine into something! Last night we finally got some into her when we mixed it with yogurt and ice cream but doing it 2-3x a day is going to be tough!
My happy girl...

Update

Last week we had Isabel's first neuro appointment since her last set of seizures. He did not have any office availability so he met with us in his "on-call" room at the Children's Hospital. He obviously was not very happy with how Isabel's body handled the seizures so he decided to add another seizure medicine. She is now on Keppra (what she was one before) and Tegretol. She is going to be taking the medicine three times a day in smaller doses, instead of twice a day in larger doses like we have been doing. This sounded great at the time until I realised that I had to get up in the middle of the night to give her 2 syringes full of nasty tasting medicine!! So far she has been a real trooper though *knock on wood*!
We also spoke about her being so far behind with her language skills. She had quite a few words before this last set of seizures and now we can barely count 10. This past weekend she has just started to use some of the words that she learned prior to the last seizure. He recommended the name of a great speech therapist that he tends to send his "difficult" cases to (GREAT). He also recommended that we get a bag valve mask at home in case she stops breathing and we can not resusitate her with rescue breathes. I hope this doesnt happen, but it's always better to be safe than sorry. We set up a follow up appointment for September and were on our way. So overall, it was a very good appointment. 
After I dropped Izzy off at school I put a call into the speech therapist. Thankfully she (herself!!) called me back the next day and spoke for almost an hour. We set up an appointment for this past Tuesday and it was definetely not what I was expecting! She was fantastic with Isabel and held her attention for almost an hour. She believes that Isabel's brain is swelling after each set of seizures and is pressing on the broca area, which is responsible for speech. When the swelling starts to subside, Isabel will start to regain some of the words that she lost after the seizures. This makes perfect sense! She also agrees that Isabel is not moving her tongue when she speaks, which again is neurological and points back to the broca area of the brain. So...to make a long story short, Isabel will need intensive therapy twice a week until further notice. Trust me, I am NOT looking foward to this at all, but I will do anything for my little girl. We are going to try to get Caden involved in this therapy and bring him to at least one therapy session a week to make him feel included.
The news could have been much worse but honestly I am ready for the news to be 100% better. She is constantly on my mind and when I am not with her I am just waiting for my phone to ring saying that she has had another seizure. I know I talk a lot about her but she truely amazes me, she is my little hero.

Hospital Stay Round 3

July 2011
I know that I have been a bad blogger lately and I apologize for that. Between EMT class, work and the kids I haven't had much time to sleep, never mind blog! As you can tell by the title of this post, my poor baby had to endure yet another hospital stay. Forth of July weekend started off great! We spent a day at the bay with our friends and attended a great neighborhood cookout where the kids played their little hearts out for hours. On July 4th Isabel woke up with hives all over her body. While Brian and I were looking at them, she had a seizure. With the combination of the hives and the seizure I decided to take her to the closest ER. When we arrived, they hooked her up to a pulse ox (97%) and listened to her breathe sounds. They gave us a prescription for benedryl and sent us on our way seeing that she has epilepsy and has had seizures before. We were in and out in about 10 minutes. After we arrived home, she had two more seizures that got progressively worse. At this point I called the on-call neurologist who told us to come into the Children's Hospital. When we arrived, while we were in the triage room, she has another seizure which allowed us to get right back into a room (good timing Isabel!). While we were in the ER, she had four more seizures despite the bolus IV doses of seizure meds that she was receiving. Her pulse ox was dropping into the 40s and it seemed that each seizure was lasting a bit longer.

Thankfully they decided to admit her. When we got up to her room, she had two more seizures and these were the worse by far. Her pulse ox dropped to 4 (it's supposed to be 96-100) she was completely limp and blue and she was not coming out of them. They had to push the staff assist button and start bagging her. It was by far the scariest experience of my life. I somehow knew that she was going to be alright but having the knowledge that I have now, having to use a BVM is NOT a good thing. Shortly after these seizures the neurologist came in and thankfully Isabel had another seizure right in front of him. While she was seizing he checked her pulse and listened to her heart to rule out cardio problems and thankfully her heart seems just fine (wonderful news)! Thankfully he ordered a new seizure med called Dilantin. After they pushed that, her seizures stopped...but her hives got SO much  worse.

They think that she is allergic to the medicine, but hey I'll take worsening hives over seizures any day! They next day they did another EEG, which of course was clear. The hives worsened and she developed a fever.

They believe that she initially had a virus which brought on the hives. Since she has epilepsy she is weak already, so anytime that she gets sick she has a chance of getting breakthrough seizures and that is what happened in this case. The fever also came from the virus. Thankfully on day 3 the hives and fever began to subside and we finally got to go home!

I give my baby girl so much credit. She has been through so much already and she continues to be so strong and so sweet. We continue to watch her very closely and in the days that have followed she has been very tired which we believe is from her being overmedicated. She still has her happy, loving and spunky personality and that's all I care about!

Admitted Again

April 2011
We have been busy lately with visitors and enjoying the beautiful spring weather. We were all starting to relax a little until last Wednesday. Isabel had four seizures, but they weren't nearly as bad as they were before. She had a low grade fever so the seizures were considered "break though seizures". She would stop what she was doing, stare off and then put both of her hands over her head and hold them there. Her pulse ox was low but she didn't turn blue or have any interruption in her breathing. The on-call doctor raised her medicine dose yet again (she is now on more than she should be for her weight). I called her doctor the next day and thankfully he wanted to see her as soon as he could. Along with the four recent seizures she has been having some balance problems so he wanted to access her. He had already ordered a four hour video recorded EEG which was scheduled for May 10th but he called the hospital and got her in as we were sitting in the room with him. He said that he wanted more data, he needed at least one seizure to be recorded. So we headed over to the Children's Hospital and she got hooked up the EEG. They had to confine her and she cried herself to sleep...

We stayed in a small room complete with toys, a bed, TV, comfy chairs etc etc for four plus hours and no seizure. The doctor decided to admit Isabel to the hospital. We were admitted to  the critical care floor again mainly because they are the only unit that can monitor children with seizures (obviously Isabel was not in critical condition).

We were brought up to her room around 3pm and I was told that she would have to stay in her crib the entire time we were there due to her being video recorded. As soon as we got to the room Isabel had a FIT...I think she remembered her previous stay. Thankfully she was so tired that she quickly fell asleep and we were able to hook up all of the machines.

Daddy and Caden came for a visit which brightened her mood quite a bit. She had to wear the EEG machine in a kitty back pack when she was awake and she was not too fond of it by the end of the night. That poor cat was hit, punched and kicked more times than I can count! It was extremely hard keeping her confined to the crib, those of you who know Isabel...she is a busy little girl! So I spent most of the night (while awake and asleep, in the crib with her).

The following day, the doctor paid us a visit and of course we didn't have any seizures recorded. He wanted to keep us for the entire weekend but since it was Easter, he released her. We are meeting with him this week to discuss changing her medicine. If that doesn't work she may be admitted again for another recorded EEG study with out medicine. Honestly I don't know why they didn't just take her off her medicine this time...
They came to remove the electrodes from her head which were glued on with some gritty substance (which is still not out of her hair 5days later :( ) and she looked a little something like this...

I wish there was an easy fix for this. I know it isn't life threatening but it's hard having to watch your child endure all of this.

Meeting with Neuro

Today we finally met with Isabel's neurologist and the news is pretty good! He is classifying this as childhood epilepsy but he is not yet ruling out that it may be genetic. Both of EEG's (the one from the day after the onset of the seizures and the one from this past Wednesday) were identical and almost perfect. The doctor said that it is very rare to see a near perfect EEG the day after that person had eight seizures, so Isabel is a mystery. He also stated that the onset of the seizures (ie 8 of them in one day) is very strange so he may be leaning SLIGHTLY towards it being genetic. But genetic testing for epilepsy is so new and even if it came back as being genetic it wouldn't change his course of treatment. But, it would mean that she would more than likely never grow out of it.
As far as the pineal cyst on her brain goes...right now it is measuring 7mm. We are going to keep a close eye on it and do another MRI at the end of the year. We are going to watch it's growth and see if it's causing Isabel any ill effects like balance issues and headaches. If it is, they will have to remove it but this is very unlikely.
She will remain on the anti-seizure medicine until further notice and thankfully we think we finally got the dosage adjusted correctly. We have gone up 1.0mL since we left the hospital which doesn't seem like a lot but when your trying to squirt medicine in a toddlers mouth twice a day, 1.0mL seems like an enormous amount! They will up the dosage again if she has another seizure or when her weight hits 28lbs. We also learned that we don't need to take her to the hospital unless her seizure lasts more than five minutes or if she has more than one in a row, like she did when she was first diagnosed. We do need to give a rescue breathe if she does not breathe on her own for three minutes or more. I hope this doesn't happen but I do feel much more at ease after just completing CPR class.
I hate that all of this is happening to my baby girl but I am happy because it could be so much worse. I just want to thank everyone who has kept Isabel in their thoughts and prayers the past few weeks, we certainly appreciate it.

Frustrated

I'm sure you're all tired of hearing my pity party (trust me, I'm even tired of hearing it) but I am really at a loss. When we left the hospital I felt confident...I felt that I had a grasp on Isabel's situation. But now I can't even put into words what I am feeling. I had to watch my baby girl suffer through another seizure last night. This one was in the bathroom and came on very suddenly. Her face turned an awful shade of grey, her lips turned blue and then she fell. Her eyes rolled back in her head and she became unresponsive. She was out for about a minute and when she finally came to she fell right to sleep in my arms. I was at home alone and just sat on the bathroom floor holding her for quite sometime. I called her neurologists office and was very nonchalantly told to up the dosage of her medication...and that was it. I spent the rest of the night staring at her, waiting for the next seizure, which thankfully never came.
This morning I woke her up for school and Izzy was not herself...it's almost like she's not with us at all. No smiles, no excitement...nothing. We dropped her off at school and I left a message for her neurologists office to call me back when they opened as Izzy was not acting like she should. The nurse called back and told me that Isabel's doctor is out of town and that she will leave a note on his desk, if he feels it's urgent enough, he will call me back...and if I don't think she is acting like herself to go to the ER and the on-call doctor will take a look at her. EXCUSE ME? All I want is some answers, I want someone to sit down with me and help me sort through this and to answer my questions. I want to know what's going on with my baby and I really don't think that's too much to ask.
I know that it is going to take time to get her medication regulated, I get that but I sincerely hope that I don't have to wait until May 24th to talk to a doctor...that I think is absurd.

Isabel's First Set of Seizures

March 2011
Last Saturday (the 19th) started off as any normal weekend day. The kids slept in then we went and got some pictures taken at JCPennys (mistake #1). We got home around 10:30 and put Isabel down for a nap. After she woke up I took her and Caden grocery shopping. I gave the kids some free samples of Swiss cheese and headed over to the bread aisle while talking to Caden about which "toast" he wanted for the week. I then looked back at Isabel who was slumped over the front of the grocery cart, lips blue and unresponsive. I grabbed her and immediately thought that she must be choking. I started whaling on her back to no avail. I shook her and screamed her name...thankfully she came to in about 30-40 seconds. She looked at me, smiled then fell asleep on my shoulder. We left the grocery store and quickly headed back home. She was alert on the way home and seemed to acting like herself. When we got to the house, I took her out of her carseat, stood her up on the grass and she immediately fell to the ground like a wet noodle. I picked her up and again she fell right to sleep, she was fighting so hard to keep her eyes open. At this point I knew something was very wrong. I put her right back in the car seat and we headed to the closest ER.
When we got there, again she was acting normal but I was a mess. They took us right back and a nursing student was doing her vitals when it happened again. She started staring off, her head started to bob, her lips turned blue and she fell asleep. At this point they started to take me very seriously and took us right to CT. They tried twice to get a decent CT scan but she was crying so hard that the picture just wasn't clear enough. She then went on to have yet another seizure in the CT room. They decided to transfer us to the Childrens Hospital by ambulance since there was nothing more that they could do for us there. They started an IV in her left hand (she ONLY sucks her left thumb so she was not happy) and gave her some anti seizure medicine. While we were waiting for the ambulance, she had another seizure.
They strapped her in her car seat to the stretcher complete with an oxygen mask and blood pressure cuff. The ride was very short but it seemed to take forever. She was so upset that she couldn't comfort herself  with her thumb and she also couldn't eat due to the tests they had to run at CHKD.
When we arrived at the Childrens Hospital we were brought into the room right next to the nurses station and Isabel was added to the patient board on top in red...which is huge for all of you who know CHKD. She proceeded to have three more seizures while we were in the ER. Each time she had a seizure her oxygen level would drop into the 60's and all of the alarms would go off. We met with countless nurses, residents and doctors. Finally we learned that we were going to be admitted and that they wanted to run another CT scan to get a better picture of her brain. By this point they had started her on a second anti seizure medicine called Keppra. Thankfully she slept soundly through the CT and it came back clear. Around midnight we were admitted and brought to our room.

She slept for about an hour then woke up screaming bloody murder. She screamed like I have never heard a child scream before. After about an hour we had to call the nurses in. It took four of them to hold her down and somehow she had managed to rip her IV out. They said that her behavior is a side effect of the first seizure medicine since they had to give her such a large amount. The nurses took Isabel to the treatment room and tried twice to start a new IV in her right hand but it blew both times. They finally called a PICU nurse who was successful. They brought her back to the room around 3am and she slept fairly well after that.

The next few days were spent waiting for tests to be run. The EEG was done on Monday and that was fairly normal except when they flashed the lights in her eyes. Her readings went up more than they should...not enough to say that she has epilepsy, but we can't rule it out. She then got a EKG on her heart which was just fine. While we were doing the EKG the lights were off in the room but the TV was on, right in front of her. While we were on the elevator coming back to her room after the procedure we think she may have had another small seizure. Her lips did not turn blue but she was unresponsive. The last and final test was the MRI. We had that done on Tuesday and thankfully it was clear for the most part. They did find a pineal cyst/tumor on her brain but they don't think that is what is causing the seizures but it is something that we are going to have to keep an eye on. Her neurologist set up another EEG for April 6th and we have a follow up with him every two months. She was sent home on anti seizure meds twice a day until further notice.

The meds seems to be working but I feel like I have lost a little piece of my Izzy. She no longer gets as excited about things, she just doesn't seem as happy. It's almost as if she is just...here. She has also been starting to get "tics". She clicks her tongue and jerks her jaw and head foward. I'm scared of whats to come. I know things could be a lot worse and I am thankful that the diagnosis is JUST seizures. I'm just nervous for my little girl, so very nervous.

New Blog!

I thought that I would go ahead and make Isabel her own blog for many reasons. One being that I was constantly posting on our families blog about her and not really about much else. Two, some people don't want to hear the constant sob story that I am telling...so now they don't have to unless they specifically click on her blog! Anyway this blog is going to about our sweet girl and the battle that she is fighting with epilepsy. For those of you who are new to my blog, she got diagnosed in March of this year at 15 months old. We have good days and bad days but she manages to keep a smile on her beautiful face through it all. I am going to copy and paste some of the posts from my previous blog to this one so that my new readers can get Isabel's full story. I am very new to the epilepsy community and would love to chat with other moms and dads who are going through the same thing with their children.