Monday, January 31, 2011

Good Times

This is just a random new medical information, no fundraiser talk, just mostly me practicing up on this new technology we call a blog and just Owen being happy. We are so ecstatic to have our Owen back; though seemingly insignificant to most, brief moments like this make us the happiest parents on the planet. (Note: Notice the audience in the background; he wants to be next)

Owen's Benefit

Many of Owen's relatives and friends are graciously working together on a benefit raffle to help with Owen's medical bills. This raffle will be held during the Odin Club Room Annual Basketball Tournament on April 2nd-3rd. Gavin's sister, Alisha, has set up an event page on Facebook to keep up to date on the fundraiser. Check out the link for updates and more information:!/event.php?eid=172714866105383


Saturday, January 29, 2011

Our Trip to Johns Hopkins in Baltimore

We're back and thank goodness for that. What a long and cold three days! Owen's dr.'s appointment was as productive as we hoped for. We were looking for three things: 1) a diagnosis, 2) an agenda of how to treat his condition, and 3) the dr. agreeing to communicate with someone back here so we wouldn't have to travel to Baltimore 4 times a year. We were potentially 3 for 3!
Let's start with the diagnosis. Dr. Kossoff believes (along with Dr. Knupp from Denver Children's Hospital whom we saw this last summer) that Owen has what's called Dravet's Syndrome. Owen tested positive months ago for a gene mutation called SCN1A, which goes hand-in-hand with Dravet's. Gavin and I were tested, and Gavin turned out to be a carrier for the mutation. Our dr. told us that since Gavin isn't exhibiting any of the symptoms (seizures, developmental delay, etc.) that it's impossible for this to be Owen's issue. We laid this lead to rest trusting he was correct. After many misfortunes with our dr. at Children's Mercy, and two other reputable dr.'s telling us the same condition, we are possibly getting to the end of the road as far as Owen's diagnosis. We will see a geneticist in the next month or so and hopefully she can shed some light.
Dr. Kossoff gave us a list of medicines, supplements, and possible surgeries that are complimentary with children with Dravet's who are also on the ketogenic diet. We have new hope that something will work, or at least decrease his seizures. For the longest time (about 8 months to be exact) we have been on the same diet and the same medications. The drs. would just increase a medication, tell me to call them in a week, and wait three days to call me back, only to basically stall because they didn't know what else to do. The cycle would repeat itself and they would tell me to increase another medication. Now we have new medications, new procedures,'s a new day and we are hopeful something will help! The last procedure he recommended is a surgical implantation of a VNS chip; it would be implanted in Owen's chest cavity (a one-day procedure) and would hopefully decrease the seizure activity in his brain. He said they rarely stop the seizures, but usually decrease the frequency.
Finally, Dr. Kossoff agreed to communicate with our dr. at Children's Mercy if we had any concerns or, does this save us some travel time and money! Overall, this was as productive of an appointment as we could have hoped for.
And the best news of all--though it's not set in stone--Dr. Kossoff does not believe Owen's condition is degenerative. Hallelujah. He simply believes the seizures caused him to lose some skills, which is very common in kids with epilepsy.  Thank you for caring about our little boy, who is so blessed to have all of you in his  life.

Friday, January 28, 2011

Owen's Story

It's very important to us that everyone who's working so hard to help our little boy be knowledgeable about his journey. We'll try the shortened version; let's see if it turns out that way.
Owen seemed perfectly healthy when he was born--no complications during pregnancy or the first few months of life. It wasn't until he was 6 months old that he began having spells that consisted of his eyes rolling back. Thus began the long road of MRIs, EEGs, and CT scans. These spells soon went away temporarily, but left Owen developmentally delayed. Owen turned 2 and these spells returned but were noticeably different and occurred more frequently. Owen was soon after diagnosed with chronic infantile epilepsy and we were still left with the question of what caused all of this to happen to our little boy. We went through extensive genetic testing and found nothing. We have tried multiple medications along with an extremely strict (disgusting I might add) ketogenic diet to attempt to control his seizures, but so far have been unsuccessful. Which brings us to the present. This winter has been tough on Owen. He has been hospitalized for pneumonia and for dehydration due to having the flu. He was completely over-medicated for over a month and spent his days sleeping; he ate just enough to get his medication down, then would sleep again. After a 3 day stint at Children's Mercy, they took him off of 3 out of the 4 of his medications, and he's a completely new little man. After not smiling or making eye contact for over a month, not being able to sit up or control his head, he's doing all of these again. However, during this hospital stay, we found out Owen's dr. thinks his condition is degenerative, which was a blow that was difficult to digest. Leaving for Johns Hopkins in two days, we are still in the investigative stage of Owen's journey. We don't know how much time he has, we don't know a specific diagnosis, and we don't know how to control these seizures. We do know that we'll love and support him unconditionally as all of you do as well. Gavin and I can't ever fully express how grateful we are for everyone's help. All we can do is say thank you with all our hearts.