NW Epilepsy Walk

Today was the Tacoma NW Epilepsy Walk and Team Joshua was out in force!  Everyone looked awesome in their Team Joshua t-shirts and the sea of purple was so neat to see.  I really felt all the support and love for Joshua while we were there and teared up when I got home thinking about how lucky we are to have such an amazing support system made up of friends and family.  Some friends we have known forever and some are new friends that we met through this journey, but both are so needed in our life right now.  We had a great turn-out and Tacoma raised over $28,000 and beat Portland!  Whoo Hooo!  Team Joshua took top honors for the most money raised by a team with just a little over $3800 - yeah!  Also, 3 out of the top 5 individual fundraisers were from our team so we were a force to be reckoned with!  I am still amazed at the generosity of people to give to such a worthy cause and to show their support for Joshua and our family (we even had friends who were NOT walking, but came by to cheer us on and even made signs!).  We are blessed.  Here are some pics of the event.

 My happy boy!

My nephew Ben and Cole showing off our shirts

The 4 of us - me, Joshua, Chip and Cole

Team Joshua group photo

Joshua's cape that my Mom made him

Riding in the bike trailer - too long of a walk for him

Another group photo of Team Joshua

I was asked to speak at the opening ceremony today and I was nervous, but also excited to bring awareness to Doose Syndrome by sharing our story with so many people.  I was toward the end of all the speakers and listening to everyone before me made me start tearing up while I was waiting to speak so I was really worried I would not get through it all.  My first few words were a bit shaky (wanted to cry), but then I pulled it together and made it through!  It felt so good when it was over that I was helping to make an impact on this beast that has taken so much from us.  For those of you that were not there, below is the speech I gave. 


Michelle's Speech
Our family did not know a lot about epilepsy before 2012 and we certainly did not understand the impact it has on people's lives and of the lives of those that love them. 

I am the proud mother of 2 young boys and in January of this year our lives changed dramatically.  Just before Joshua's 4th birthday he started hitting his head on tables and spilling his milk.  We just thought he was clumsy or unbalanced.  After researching the web to see what might be going on,  we feared these might be Atonic seizures and took him to see our pediatrician.  We had an MRI and EEG done and the EEG revealed he was having generalized seizures about every 2-8 minutes.  We were put on Depakote immediately and told that Joshua had Epilepsy (it was 3 days after his 4th B-Day). 

We were doing OK on Depakote for a few weeks until Feb. 22nd.  At 5 AM I woke up to a strange noise and found Joshua in the middle of a grand mal seizure on my bedroom floor.  I had never seen one before so I panicked when I saw he was foaming at the mouth, turning blue and having a hard time breathing.  We called 911 and spent most of the day in the ER.  After this Joshua started having absence seizures, Myoclonic seizures and Atonic head drops on a daily basis.  We were seeing on most days around 50+ seizures. 

In March we were diagnosed with Doose Syndrome which is a rare childhood epilepsy that is very difficult to treat because the patient has multiple seizure types and the seizures are often resistant to medications.  Joshua is on 3 medications twice daily and they have done little to control his seizures. 

Joshua has regressed in most areas since his seizures started and sometimes he seems like a totally different kid.  He has issues with his speech, focus, attention span, balance, gross and fine motor skills, memory and preschool academics. He is often lethargic, irritable and overly sensitive.  He qualified for and now attends special Ed preschool.

Now, let's get to the positive stuff!  On May 5th we started the Modified Atkins Diet (MAD) which is similar to, but less restrictive than the Ketogenic diet.  We have seen over a 50% reduction in his seizures and have almost completely stopped his daytime seizures.  We are now working to get rid of his night time Myoclonics by tweaking the diet and adjusting his medications.  If all goes well we could be weaning one of his medications starting in July. 

My ultimate goal is to get Joshua seizure free and medication free and I won't stop until that happens. 

Our family is fighting WITH you and together we WILL beat this beast we call Epilepsy.