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).

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!!