Finally A Diagnosis...Sort Of

Tuesday we had an EEG for Meghan. We have seen very little to no seizure activity over these past several weeks, so I was so excited to see what the EEG would look like. Well...not too good. Still abnormal with more spiking on the left side (the more "sick" side) with some on the right. It is hard to say if she is actually have seizures on that side, or if the seizures are firing very close to the right side and just crossing the hemisphere. She had better EEG's when she was on the Steroids, but the overall improvement from the Steroids themselves was very minimal. Minimal enough where he felt that the risks outweighed the benefits. So far, the medication that has worked the best is the Felbatol. Dr Chez was hoping for a better EEG, but was so totally thrilled to hear about her diminished seizure activity.

Meghan has been seizure free, but her balance is so bad. She literally bounces off the walls when she walks down the hall. It is so sad to see her get frustrated from falling all the time. So, starting today, we are reducing her Clobazam and Depakote to see if that will help her. I'm totally nervous. I really hope that we wont see an increase in her seizure activity.

So I spend a lot of time on the Internet researching Epilepsy. About a month back I happened upon Dravet Syndrome. When I read about the onset, seizure progression, triggers, reluctant to medications, and the developmental delays, I could swear this was written for Meghan. So Tuesday I asked the Neuro about her possibly having Dravet Syndrome. He indicated that he was pretty sure that during her genetic testing, the SCNA1 Channel came back normal, which it did. I reminded him that it was indicated that one of her channels came back abnormal. He pulled up her tests and found that she did have an abnormal mutation in her KCNQ2 Channel. He then went on about how the Channelopothy's work and blah blah blah blah (I shut down when it comes to genetic talk). To sum it up...he is confident the she has some form of epilepsy that could be Dravet (because you don't need to have the gene mutation, they can clinically diagnose it) or related to Dravet (undiscovered...still). Hello...where is my kick down doc??? After all, I suggested it...right (LOL).

From here going forward, we are going to continue on our path of treatment of medications. She is responding well to these current medications which is awesome! We will be doing another MRI in hopes to see a reduction in her brain inflammation due to the past Steroid treatment and her lack of seizure activity. We have the Keto Diet in our back pocket if need be. We are also going to more than likely pursue the HBOT (just need to figure out fundraising). Unfortunately our hope that Meghan will outgrow her seizures is diminishing rather quickly. So...we will pick up our boot straps and keep on truckn (I think that's a saying...I get them confused).

Going Back...I Wish I Could

I go through phases of epilepsy research. There are times that I cannot absorb enough information and other times I PHYSICALLY cannot make myself look into epilepsy. I guess 2 years later, it is still a bit surreal. Well this past week I have had my face in the computer reading blogs, researching websites and emailing new friends who share the world of epilepsy with us. I have gained a plethera of information and I have formed quite a list for Dr Chez (sorry doc). During my research, I did happen upon a type of epilepsy called Status Epilepticus. Meghan has had this quite a few times. Whenever she goes into a Generalized Tonic Clonic, she can never pull herself out of them on her own. It takes high doses of Diastat and Ativan, to the point of intubation, for them to stop. But reading about this brings me back to an event that, to this day almost 2 full years later, physically hurts my heart to think about.

In January of 2009, Meghan got some random virus which ended up in double ear infections. Matt and I took her to the after hours clinic where she ended up going into a Status Epilepticus seizure. The doctor sent us over to the ER, which was just on the other side of the parking lot. We got right in, X-rays, CT scan, blood...the whole nine yards. They admitted us that night into the special care unit as she was being monitored. On the second day, the doctor came in and said that she can go home. She still had a fever, and was still apparently sick, but they did not see anymore seizure activity. That night we put her to bed. My mom told me that maybe we should stay up with her, but I said that she would be OK. She has not had anymore seizures. So off to bed we went. I got up the next day, got ready and went to work. At 8:30 that morning my mom went in to get Meghan up as she usually didn't sleep that long. Meghan was completly unconcious and unresponsive. She was breathing, but she wouldn't wake up. She was 10 months when this happened, and when we got back from the hospital after that episode, she was equivilent to a 2 1/2 month. That night she had a Status Epilepticus seizure that honestly probably lasted 3 to 4 hours, thus causing her brain damage.

This event will haunt me forever with the "if only's".

Since I have read so many personal experiences, I don't blame myself much anymore for Meghan's epilepsy or seizure condition (since we don't have an actual diagnoses yet). I did go through that and it sucked. I have really worked on having a better attitude about it, and I think it has worked. I was talking to my friend yesterday about a mutual friend of ours who's daughter has epilepsy. She said something like "I don't understand. There are so many parents who are crack heads or meth heads and have perfectly healthy children. Here are you guys who did everything right in pregnancy and look what happened." Awe friend, I have said that to myself a hundred times in the past, talked to God about it wanting that explained. But here is where I know I have grown as a mother and I am so damn proud of myself. Instead of responding with "It's not fair. I did do everything right." I responded "But could those parents care for children like ours. Not in a million years." For me this is a HUGE breakthrough. I can do this, and I am so proud of my Meghan that she has been so patient with me while I journeyed to this point. Thank you my Meggers!!

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!!!

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!!