Purple Day

The Martens Family on Purple Day

Isn't that a contagious grin on his face? Mason loves having his picture taken. 

We all wore purple! (Daryl's shirt looks black, but actually is a dark purple). Although Mason is clueless about Epilepsy, he does know when he's having a seizure and can say it... sort of. So, even he has a sense of awareness about Epilepsy. 

He had a rough night Tuesday night. Throwing up. He gives no warning, it just happens. Messy. He stayed home from school on Wednesday and lay on the couch all day. Because I needed to watch him closely, so did I. he was also very clingy and cuddly. The stress of being sick added a bunch of seizures to his day as well. The risk with him being sick is a fever. That kick-starts non-convulsive status. That just means he starts seizing and it doesn't stop. Thankfully Advil liquid (not the pill) works. Pray that it does keep working! Otherwise it means a trip to the hospital in an ambulance, and Mason doesn't really care for those.

He perked up Wednesday at supper time. Ate like a horse, making up for the rest of the day! Thursday back to regular and off to school. :) Happy mommy!

Travis

Here's an update on Travis in Michigan from his mom:

 Travis got out on Friday night.  Unbelievable he had minimal seizure activity although on Thursday evening had one of his major seizures - looks like a drop seizure on the video and eeg. Unfortunately they appear bifocal which you probably know means that there is no possibility of a resection [this is the surgery where they remove a portion of the brain].  We talked a little about the corpus callasotomy, but we aren't there yet.  Travis is definitely in the throws of puberty which they acknowledge is making the frequency worse.  He has grown too he's just about 5 foot and weights about 109 lbs.

The plus of being in the hospital is you have more Docs checking him out and brainstorming.  The Doc in charge of the floor last week, likes to tweak VNS pacemakers.  He got a little creative with the cycle times, pulse width and amp strength.  Based on those new settings, when Travis had his big seizure the swiping of the magnet stopped the seizure within seconds which is a far cry from the minute or two (which you know feels like an eternity) we were used to.

So I have to set up an appointment with his pediatric neurologist - who was kept informed but wasn't able to see Travis at the hospital he was in because he was in charge of the monitoring floor at one of the new hospitals that just opened up.

I'm feeling a little better about Travis' seizures, they adjusted med doses to his new weight so between that and the VNS settings perhaps we can get him seizure free for a little while.

I feel bad because people who don't understand this process seem disappointed that there was no clear cut solution and as you know there is no easy way to explain it except that its just so complex when you are dealing with the brain.

Thanks for all your encouragement and the request for prayer from all of those who know you.

Allergies and Seizures

Allergies (Hay Fever) and Seizures don't mix. It's 2:30 am and I've just come from Mason's room - he's still awake. His congestion woke him up triggering an episode of seizures. Waking is a common trigger in many people and Mason has seizures every time he wakes up, whether in the morning, middle of the night or dozing in the car. Allergies also have the potential to trigger more seizures as well as increase the intensity. In Mason they do both. 

Mason did not have allergies until nearly two years ago. The trickiest thing about it was that he could not have allergy or cold medications because they interact with his seizure medications by changing the dose in his system.  (He suffers cold turkey through all his colds. Thankfully he doesn't get sick very often) All the sneezing and itchy watery eyes was stressing his body so much that his seizures shot up. We have a great pharmacist that gives us a lot of great advice. (She used to recognize my voice on the phone before I told her who I was! So many phone calls...)  She did a bunch of research for me and gave a recommendation for an allergy med that ended up having little effect on the seizure meds. :] 

So he's back on that as of today. I'd noticed his seizures increase in the last couple of days but the sneezing really kicked in yesterday and today. The seizures that he just had were quite strong and he had probably around 20 or so. I don't count anymore. (I counted and marked down every single seizure for the first five years.)

Well, he's been quiet for a few minutes, now. Probably fell back asleep. It will take a few days for the allergy medication to really work. Restricted outside play! : (  Which is too bad now that we finally have some warm weather!

He does think that sneezing is terribly funny and laughs like crazy every time he, or anyone, sneezes!

G'night....

Moments Ago ....

With eyebrows raised and mouth opening and closing ever so slightly in a rhythmic fashion, Mason sits at the table surrounded by paper, stamps and scissors. 

Something has just occurred for the first time in his life. 

He cut a strip of paper. Woo Hoo!!! Isn't that exciting? Ok, you may think I'm strange for writing this, but the boy has always cut randomly on paper. Cutting a fairly straight strip indicates improvement in his fine motor skills and the facial contortions show his concentration. 

Anyway, thanks for reading my random little stories!

ps Vikki Hopes did an amazing job on writing the story on Mason and us in the local newspaper. abbynews.com (click on the lifestyles tab)

Travis

A little while back I let you know about my friend in Michigan whose son also has Epilepsy. She sent this today:

fyi for those who don't understand all our lingo:

- intensive monitoring: that's what Travis is undergoing right now. He must stay on camera so they can see the seizures as well. Have you ever tried to keep a kid in a bed for a few days straight? While he's attached to a wack-load of wires?! They also have to be sleep deprived for this, as that often triggers more seizures. Mason has had quite a few of these sessions, and they are not pleasant, to say the least. They stay hooked up until they have received enough data. anywhere from a day or two to a week or more.

- leads: wires that are attached to a computer that records electrical brain activity. The leads are glued on to the scalp, then they put this mesh toque on to keep it all in place. It's very uncomfortable and the kids tend to try to pull it off. Glueing the leads on can take an hour or more, depending on how many there are, what kind of glue they use etc. 

-pray for seizures: This is the one time that it is GOOD to pray for more seizures. And some big ones, too! The more info the dr's get, the better.

Yesterday was the first day for Travis at the hospital, prayer is already paying off as the applying of the 28 leads to Travis' head went better than expected he fought it a little, but the EEG techs were so good and worked so fast that I think they did it in record time - Randy and I were able to keep him busy doing his puzzles and such that there wasn't nearly as much resistance as we expected.  We of course had to keep him entertained frequently and we can't leave him alone for a second as he will have the netting cap covering the leads and wires off in the matter of a nanosecond - I'm sure you know what that's like LOL!! So now we are hoping for some seizure activity events for them to check out without having to take meds away to do so, they are also interested in the general state of his EEG outside of the seizure activity.  Thanks again for the good thoughts and prayers they are appreciated and needed. I'll keep you posted.  Suzanne

REMEMBER TO WEAR PURPLE FOR EPILEPSY AWARENESS!!! MARCH 26

Spring Break

We are now over halfway through our two week Spring Break. Not that it's spring here! We keep getting snow! Mason has been doing quite well so far, for being out of routine. Although, he is having trouble with his bedtime routine and not cooperating. I need to get into using the picture symbols like I'm supposed to. I started to, but I'm not good at that stuff. I have a wonderful friend who will be helping me get that better organized. (check out some recent archives if you want to know what I think of structure!!) 

I am using a lot of respite, so Mason is getting lots of fun sleepovers!:) When he's at home, he's been having a lot of fun with Sydney, doing crafts, playing computer games, baking cookies, and playing air hockey, while Asia's been helping me with home improvement projects. (now, that is something I do well and enjoy a lot. Just give me some power tools.....)

Mason even slept through the night twice in a row last week! 

I also want to let you know that Mason will be featured in the Abbotsford and Mission newspapers on Thursday March 19 to bring awareness to Epilepsy! You will also be able to see it online on Wednesday at www.abbynews.com. Scary and exciting all at once! :)  :0

March is Epilepsy Awareness Month!

March is Epilepsy Awareness Month.

Here are some Quick Facts (from purpleday.org)

Epilepsy affects approximately 1 in 100 people.

At least 1 in every 10 people will have one seizure in their lifetime.

There are approximately 300,000 Canadians living with epilepsy.

There are approximately 3 million Americans living with epilepsy.

There are approximately 50 million people around the world living with epilepsy.

Epilepsy is NOT contagious. Epilepsy is NOT a disease.  Epilepsy is NOT a psychological disorder.

Find many more interesting facts about Epilepsy at 

bluesticker.com/mason