Just Normal Kid Stuff

As a parent with a child who has a medical condition, it seems like we never get the opportunity to just sit, relax and just watch our children. There is always some sort of scrutiny and or assessment going on when I watch her play. Was that a seizure, are her meltdowns a side effect of the medication, can I call her change in play progression in her development, and so on and on. I feel like I am always on a heightened sense of alertness with her.

Dr Khan, one of our neurologists, thought it was amazing how well I can spot her seizures. We went in for a 72 hour EEG. Along with the leads on her head, the entire test is video recorded (always fun trying to sleep under the watchful eye). He would see me play with her on the bed and then I would push the seizure button. He visually could not see the seizures but the EEG patterns picked it up. I am just so used to spotting them.

So, the past week or so, Meghan has been cranky, not wanting to eat, screechy, completely unhappy and unsettled. So I analyze and compare her symptoms to what I think could be going on. And it goes something like this:

Meghan's Symptoms:
Crankiness
Ear Poking
Loose Acidic Stools (sorry - tmi)
Bad Diaper Rash
No Appetite
Cranky
Waking up through the night (ugh)

My Diagnoses's (yes...plural):
Steroid Withdrawal
Vimpat Withdrawal
Adjusting to the Felbatol...still
Maybe showing an allergic reaction to the Felbatol

Verdict:
A Tooth!!!

Not just a tooth but a 2-year molar. I had to laugh. Something so normal and I completely missed it. Hello...wouldn't that be anybody's first guess!! I guess it just goes to show that with a child who has a medical condition, sometimes the normal is so abnormal for us parents.

Cautiously Optimistic

On Friday October 8 will be two years exactly that Meghan had her first seizure. Oh how I remember that day. She had her well baby check that day and got her 6th month immunizations (the final dose of the previous two immunizations). I also opted to get her the flu shot. We are not big on the flu shot, but with the girls being in daycare and Elizabeth previously having it without any problems, I went ahead and got Meghan hers. I went back to work that day after the appointment but totally had this urge to just want to be at home with her. The evening came and everything was uneventful! Meghan, being 6 months of age, liked to look at herself in the mirror. So my mom had her up on the bathroom counter and Elizabeth kept turning the light off on them. Every time she would turn it off and on, it would scare Meghan and she would jump. It was pretty funny actually. Well, they left the bathroom and my mom carried her into the kitchen. It was then that my mom noticed that she was continuing to do that "startled type" of jump or twitch. She called me in and I watched her. I have NEVER seen a seizure in my life or really gave seizures a second thought for that matter. But all it took was maybe two twitches, but the look in her eyes and the propped open mouth, I knew it was a seizure.

Poor Matt was on the bed talking on the phone to his sister down in LA. I ran in the room, yelled at Matt to get off the phone, call 911, Meghan was having a seizure. Really, poor guy, I have never seen panic and confusion like that in him. As we were waiting for the ambulance to come, Meghan let out this laugh that completely sounded like it was inhuman...seriously!!! I still get chills remembering that laugh. The paramedics came, confirmed that she was having a seizure, and we loaded up and headed to the hospital. In the ambulance, they actually had to give her an adult dose of Ativan because the seizure wouldn't stop. After a few days in the hospital, a normal EEG and MRI, we went home hoping that it was just single event.

Here we are two years later still looking for a known amongst all the medical craziness. It has always been 1 step forward and 2 steps back. But today, for the first time in 2 years, I feel like we have taken 2 steps forward, and not a single stumble backwards. I'm cautiously optimistic because I have learned that you can't jump full on into a celebration because the celebration may only be short lived. However, you bet I am doing my little happy dance in my cautiously optimistic phase!!!

So why you ask...the Felbatol is working!!!!! We have reduced her seizures on average from about 30 a day to maybe 2. We don't know what her EEG looks like, or what an MRI will show, BUT, the seizures are decreasing! That's a start and it was enough to even make Dr Chez excited (seriously that takes a lot). We are adding a little bit more Felbatol to her medicine regime to see if we can clean up the straggling seizures and we will go in for an EEG in a few weeks. I pray that this continues to work because her seizures have been so hard to control with the medication. Time will tell though.

Meghan's last Steroid shot is tomorrow...woohoo!!! She is actually starting to look normal again. Thank you all for your thoughts and prayers.

In a matter of 4 weeks on the steroids, Meghan went from this...



To this!!!

Eight Years!!!!!

I am so totally proud to announce that today is mine and Matt's 8 year Wedding Anniversary!!!! Matt is such a wonderful husband and truly my best friend. Looking back at our life, it hasn't really gone exactly as we had planned. I mean really who sits down with their new spouse and say "Let's see, we want to keep our debt level just barely below constant stress, let's throw in a water pipe breakage in which this would lead us to put brand new plumbing throughout the house, we want the neighbors behind us to constantly heave stuff in our back yard and try to shoot the squirrels with homemade blow gun darts. Oh, and those darts will sporadically litter our yard thus making us do a walk through prior to letting the kids out. Kids, lets plan for a special needs child that will truly test our marriage to the very last straw...but it will be great!" I can go on and on, but I DO have to say that I am truly blessed with EVERYTHING we have. It has had it's bumps, and there will be so many more bumps, but when I snuggle in his arms at night and he holds me tight, I feel that WE can take on the world by ourselves. It is the best feeling EVER. Happy Anniversary Matt <3>








Every year, the Monday before our anniversary, Matt will send me a dozen red roses and a white rose for every year we have been married to work. Every time I look at then I get this ridiculous grin on my face!!

Back To The Drawing Board...

We had another EEG on Tuesday and the improvement was not any better over the one we had two weeks ago. So, we have decided to take Meghan off the Sterroids, and adjust her medicine regime. Currently she is on Vimpat, Depakote, and Clobazam. We are going to take away her Vimpat, keep the Clobazam as is, reduce her Depakote a tad, and introduce Felbatol. Apparently, in some situations where the Depakote works some, but does not completely eliminate the seizures, the Felbatol can go that extra mile and possibly knock out the rest of her seizures. Dr Chez was very happy with her socialization and her trying to mimic new sounds and actions. Yay for that.

We really hope this works. It may take some tweaking to get the medications right, and her blood levels OK, but for her age, we are running out of medicine options. If this combination of medication does not work, then Dr Chez wants to put Meghan on the Ketogenic Diet. In March of 2009, we met with a dietician to go over the Keto diet and what it entails. It is basically an EXTREME Atkins Diet. I guess with the total elimination of glucose and carbs, your bodily naturally will raise the Ketone levels and for some reason they help reduce, even eliminate seizures. So instead of a snack of cheerios, she could have some peanut butter, mixed with canola oil, and topped with some mayonnaise. Yum...I think not. BUT, if this diet will help, then yes, we will do it. Our plan though for now is to get her adjusted to her new medications, get the Sterroids out of her system, then put her on a Gluten Free diet. If all that still fails to help eliminate her seizures, then Atkins here we come (You know I will be chowing pizza in my garage).

Matt and I are also in the process of researching Hyperbaric Oxygen Therapy (HBOT). This is definitely a more homeopathic route and is frowned upon by the some neurologists (ours especially). This therapy we would use in conjunction with her medication. There is no telling if it will totally help her or do absolutely nothing for her. This therapy is SO expensive. We are looking at going 5 days a week for 80 weeks (yes 80) 1 hour a day. Total cost, 10K! Yikes, as it is not covered under insurance. That amount of money is A LOT for us, but really can we put a price limit on what we will do to help get our daughter well. No. SO friends, if you see us out holding a sign to wash your car for donations, please stop...LOL! We are still researching it, looking through medical journals (thank you psychology degree for teaching me how to read those), talking to anybody that has heard anything about it. Right now, we are leaning towards yes.

Meghan is such a strong little girl. She totally brings us so much joy. To say that I love her, is TOTALLY an understatement. I'm so proud of both of my girls.

I feel bad that I never talk much about Elizabeth. She is an ANGEL...well an angel with an attitude...but hey, she is my child :) She is doing so good in first grade. I love listening to her read, and the effort that she puts into her homework. I actually got in trouble from her teacher...LOL. Elizabeth has the BEST teacher! She is retiring this year and I am so blessed that we got her as a teacher. So, when the kids went back to school, they were assessed on their reading. I HAD (there is that darn word again) planned on working with Elizabeth throughout the summer to make sure that she keeps up on her reading. Well, didn't happen. So, based on her reading assessment, she was put into the early reader program which is for the lower level readers. Elizabeth didn't care, but it broke my heart. So, I drilled sight words, letter identification, letter sounds, rhyming words down her throat EVERY night. Matt and I mom shook their heads and told me that I was only going to hurt the situation more. But oh no, I was right, the overachiever Type - A personality, I was right and this was the way to do it. So proudly I went to Elizabeth's teacher so I could take a look at her reading assessment and know what to focus on (well really to add another layer to the homework schedule). I told her what I was doing and she sat there and totally looked at me. She said that I was doing way too much and really Elizabeth only needed help with certain letters and their sounds. So, she wants me to let her do the teaching and I will supplement with sight word identification and her homework papers that get sent home. I felt SO much better talking to her. Love you Ms. Knight!!! I am so so so so proud of Elizabeth! And, oh my, she is growing up so fast!!

The Past 6 Weeks

Oh my goodness...where has the time gone. We have been in a whirlwind of busyness over these past 5 to 6 weeks. Seeing how I took 3 weeks off of work, one would think I should have been able to post an update blog earlier...FAIL!!! So here we go...

The Biopsy
Meghan had her Bilateral Burr-hole Brain Biopsy (that's the official terminology) on Aug 6! This biopsy was going to give us the answer on whether or not she has Rasmussen's or some other form of Encephalitis. Needless to say Matt and I were scared to death for this biopsy. After all, they were going in and taking brain tissue on both sides of my daughters head. The Neuro-Surgeon stated that the right side of her brain looked great! Thank goodness for that. However, he did say that the left side looked very abnormal with a completely different coloring and texture (we sorta knew that with since that is where the damage is). Well after she awoke from her anaesthesia, she was good to go. She was still the same Meghan that we went in with...phew! Well she was missing a couple patches of hair and had some gross looking scars, but she was great. Twenty-four hours later we headed home!!!

Meghan pre-biopsy at 5am!


Meghan during recovery. She actually launched herself forward and hit her head against the bars. Of course...my child less than an hour after brain surgery hits her head!


Looks like we removed her horns instead of giving her a brain biopsy...LOL!



The Waiting
Her biopsy was on a Friday and we were told we would get the results by the following Friday. Luckily, Elizabeth went back to school in which I busied myself with that and doing odds and ends around the house. If I didn't have that to keep my busy, I would have gone CRAZY. SO...Friday rolls around, the 1 week mark, and no call. I picked up the phone and called the Neurologists office! I was told that our Neurologist is out of town and will not return until the following Wednesday!! WHAT!! The receptionist could see that the results were in but there was nobody in the office that I could talk to at that time to get them. Grrr, I was sooo not happy. How dare they go on vacation when I am sitting on pins and needles. So once again...I busied myself through the weekend and tried not to think about it too much...yeah right!

The Call
Monday morning came, I got Elizabeth off to school, came home, and cleaned my kitchen. I walked in my room and saw I had a missed call and a voicemail from the Neurologists office on my cell phone. My heart totally stopped. With shaky fingers I called my voicemail. Our Neurologists Nurse Practitioner called to discuss the results of the biopsy so give her a call back. I HATE PHONE TAG. So I frantically call the office and tell the receptionist that I just missed a call from the NP and had to talk to her right then. Well, she was with a patient but would call when she was done. I'm such a total dork that I told the receptionist that I was going to sit there with my phone in hand and wait for the call...LOL...like she cared. The phone rings, the caller ID said Sutter Neuro...it was time!

The Results
The office nurse called me back as the NP was still busy and she didn't want me to wait any longer for the news...I guess the receptionist did tell them I was sitting there with my phone in hand...Love her!!! She starts going through all the mumble-jumble- over-my-head-medical-neurological-jargon that was in the report. I wanted to tell her so bad to just get to the damn point (sorry-I was totally stressed though). While I'm completely hanging on to each and every word she says (half of which was pointless because I did not comprehend) I hear her say: based on the tissue that was received from the biopsy there is no evidence of any type of Encephalitis in which the diagnosis of Rasmussen's in NEGATIVE. What, really, it's negative...no Rasmussen's...WOOHOO!! She then goes on to state that the abnormal tissue that was taken from the left side is a result of damage quite likely due to prolonged seizure activity. There is no underlying disease or illness that lead to the damage. Can you say that I did this crazy insane happy dance! Finally tears of joy!!!

The Follow-Up Appointment
We went into this appointment on cloud 9! Where ever the road will take us, it is much more brighter than the Rasmussen's road. Well, Neurologists have a way of taking the wind out of your sails. He pretty much has no idea what is wrong. He said that he is going to ask around (the country with other neurologists) to see what diagnoses are out there that resembles Rasmussen's but it is not that. In the mean time, he wants us to start the steroid injections to see how her seizures will react.

The Shots
I was really surprised how well Meghan tolerated the injections. We bought this cream called "Emla Cream" that we put on her leg 40 minutes before we give her the shot that numbs the surface and a few layers below. We keep the cream in place with these Tegaderm patches (expensive little things, but thanks to Ebay, I can get them cheap cheap cheap). The worst part of this process for Meghan is holding her to do the shot. In fact, when we are done with the shot, she sits down on the floor, looks at her leg and giggles. She also hates getting her blood pressure done. This has to be done on a daily basis and usually takes anywhere from 3 to 10 tries to get her to hold still. We have found that if you give her candy while doing this, she will tolerate it better. Probably not the healthiest for her, but for our sanity, it works :) Well, since we do the shots nightly, and the type of steroids they are, she needs to be seen every week by the Neurologist. Since starting the shots, her seizures have decreased to maybe 2 or 3 a day (from maybe 5 to 10 a day). Two weeks after starting the shots (9/7), he did another EEG. He wasn't impressed at all. However, over these last 2 weeks Meghan has engaged more socially with laughing. She will laugh at the T.V. and get really excited. This is new, but it is also appropriate for her age...so it is kinda like which came first, the Chicken or the Egg. So, by reporting this to our Neurologist, he is going to give the steroids 2 more weeks and do another EEG on 9/21. If at that time then he will pull the shots and think of something else to do.

1 full week of Steroids!

2 full weeks of Steroids

3 full weeks of Steroids


Family Matters
It has been an ongoing crazy roller coaster this past month in a half or so. It has been very stressful for Matt and I. My mom and his parents have been there faithfully which is a blessing and Elizabeth just goes with it. Having 3 weeks off was great, but I found it so hard to be a stay at home mom and really missed work actually. So the day to day routine is something such as: get up, get ready, get Elizabeth up and ready, drop her off at school, go to work, come home, dinner (if my mom doesn't do it - Thank you mom :)) homework with Elizabeth, shots, bath's, medication, and finally snuggle time on the couch. If I make it to bed without falling asleep on the couch, it is a huge accomplishment! Some day's go smoother than other's, and some day's just end up in tears...all around.

Like I have said before, this is not the life I had dreamt up. It does not fit with the plan that I had. Letting go of the HAD is the hardest part, but holding on to it hurts the most. I so envy every one's vacations, their happy healthy bounding children, there seemingly smooth life...ugh, I can go on...but it doesn't change my situation. And I know there are other situations way worse than mine and my heart goes out to them. What ever the future holds, I will absolutely do the best that I can, and try so hard to keep my head up and the thoughts positive. There will be tears, oh so many more, but all I can do is push forward.

I hope I can be half the mother as she is the daughter to me. I love her so!


**I really did not mean to get all emotional, but I guess I'm just on a down slope right now**

I will talk to you all soon...way sooner than last time I promise :)


Hugs to everyone!!!