I'm Not a Doctor, But I Play One on TV






I am in no way a medical professional. Information provided is just my experience. If you need medical information, please contact your doctor.

Friday, May 30, 2008

Stealing Time When Everyone is Sleeping on the Living Room Floor

Boy, it is really hard to "steal time" for myself, including writing in my new blog! As I sit here, on the couch, everyone is laying down for bed. Mind you, they are laying on the living room floor, where we have been camping out since we got back from the hospital. Jason is still uneasy about the possibility of another seizure. He feels he can watch Westin better this way. I honestly don't mind as I get the couch and I don't wake up with my usual back pain. FYI: memory foam type mattresses aren't the best choice for overweight people, at least not me! So, it is like camping in the living room. Westin is on a twin mattress. Jason and Wieland are on a blow up mattress. It isn't too different from our normal arrangement. Normally we are all in our master bedroom.

It started when Westin was 2 and diagnosed with type 1 diabetes. When we brought him home from the hospital we moved his full size bed into our bedroom. (Our bedroom isn't that big so imagine it will a queen and full bed plus dresser.) I would sleep right next to him, to watch for sweats or a change in breathing, anything that would let me know something was wrong. For some reason I didn't think to just check his blood sugar. Later we had a twin day bed sent our way from a friend of my mom. That opened up a lot of room, but now I was sharing a twin with my 3 or 4 year old. Anyway, it worked. Then, when he was 4 and had just started pumping insulin, I was, for the first time in 2 years, doing night checks. I never had checked Westin's blood sugar at night before then. During the start up on the pump, our trainer asked us to do 3 am checks. We went from being use to chasing highs with insulin to being coached to keep his numbers much lower which meant chasing lows with food. We got a little too comfortable and one spring morning, right after waking, Westin had his first and only hypoglycemic seizure. After that day, I became a maniac about night checks. Every time I would wake at night, I would have to check his sugar. I couldn't go back to sleep worrying that I might have woke due to my mother's intuition. What if I was suppose to wake up to check his sugar? For a period of time we did put Westin back in his own room. And for some time my husband and I would take turns going to check his sugar. If I woke, I would either go do it myself or have to wake my husband to go do it. Eventually, Westin just ended up back in our room and I pretty much do all the checks. It works for us.



So along came Wieland. A few months after his 2nd birthday he proved he could climb out of his crib, which was in his own room. So for a little while we got by by extending the top of his crib with a gate and some zip ties. I wish I had a picture to share. It was a little barbaric and family would tend to ask if I was still caging my child. So when he was old enough to handle sleeping on the floor, without too much disruption, we moved him to the floor with Westin, right next to the bed. Everyone is happier this way and I don't have to walk across the house to do the never ending blood sugar checks. We have decided to embrace the idea, rather than beat ourselves up over it. I purchased a queen bed frame that is meant to have a trundle. And I even got a full size trundle frame. Now I just need to scrape up the money for a full mattress. (And a new queen mattress...have I said how much I hate my mattress.)

Now some of you are still probably wondering why I check Westin's sugar up to 10+ times a day?! Westin's blood sugar is never what you would call stable. Remember, type 1 diabetes is a balancing act. They don't have the benefit of the body doing the self regulation. They are completely dependant on the insulin we inject or pump into the body. You are always trying to balance food and insulin. A little too much insulin and you are fighting lows. Too little insulin and you are fighting highs. A little too much exercise and you are fighting lows. An air bubble in the line from the pump and you are wondering if the resulting high blood sugar is from a bad infusion set (where the insulin enters the body), too little insulin, oncoming illness, growth spurt, air bubble, full moon? It is a constant guessing game. So how could I possible sleep well at night for 8-10 hours without multiple blood sugar checks. SO much can change in 8-10 hours! Would I go 8-10 hours during the day without checking him? Absolutely not! I wish I was a heavy sleeper but I am not.



On the topic of sharing a room, we have a three bedroom house and are only using one bedroom for actual sleeping! Why not consider turning our house into a co-op? I say that only half joking. If I could find the right family, I would actually consider having a family live with us and share expenses. We have the room! Ideally it would be great if it were another homeschooling family, especially with another little one. Nothing is harder than trying to homeschool with a 2 year old....well, when it comes to homeschooling that is probably our biggest challenge. We definitely face harder challenges throughout the day.


Okay, so I really got on here tonight thinking I would explain why we started homeschooling. Maybe I will save that for another day. I think I would rather head to bed...well, lay down where I sit typing this (the couch) and go to sleep...after I check Westin's blood sugar of course :)

Thursday, May 29, 2008

Oprah Show Idea: Faustman vs Type 1 Diabetes

Some other parents on Children With Diabetes decided to bombard Oprah with videos about type 1 diabetes. This is my attempt. I have sent this video to Oprah and a similar one to numerous other news organizations. I have had plenty of positive response to the video, but not from any media outlets. I have had parents contact me, letting me know about fundraising events spurred by this video. Others have made personal donations to http://www.faustmanlab.org/. 25 million is needed to start phase 2 trial sometime in 2009 or 2010, whenever they are ready to proceed. Will this be the cure? We don't know. Will it be a cure for all with type 1? We don't know. But the fact that she is an underdog (Dr. Faustman) is enough to get me riled up. The fact that she isn't backed by Big Pharm gives me hope.

Lately, with Westin's additional diagnosis of epilepsy, family members have asked what they can do to help? Even though we hate the additional diagnosis, we hate diabetes even more. All these diseases are manageable but diabetes affects our lives all day everyday. We need a cure. So what can you do? You can make a donation at the link above in Westin's name. That would mean a lot to us.

Advertising

So you might be wondering what is up with all the ads on my page? Well, in the long run I hope to offer some useful links to items I use and recommend. Maybe I might even make a little income off of it.




Westin, though covered by insurance, uses a continuous glucose monitor that is NOT paid for by insurance. A little extra money in this self employed household could go a very long way!




So if you have an Amazon purchase in your future, think of heading to my site first and going into Amazon that way. I would really appreciate the help.

Wednesday, May 28, 2008

Pediatrician Follow-up

We met with Westin's pediatrician today after this weekend's visit to the ER to be diagnosed with epilepsy after two seizures in a row. The first happened around 1:20am and was a grand mal or tonic clonic and lasted a good 5 minutes (not typical of the type of epilepsy he was diagnosed with, most are far less severe). In the ER before being discharged he had another, but not quite as severe. After the EEG our neurologist reported back to the pediatrician that Westin appears to have Benign Childhood Epilepsy with Centrotemporal Spikes (BCECTS), also known as benign rolandic epilepsy. The pediatrician assured us that this was really the best case scenario. According to some papers he printed off for me with more information, is makes up about 10-20% of all childhood epilepsies. The average age of onset is 9 (Westin is 10) and generally go into spontaneous remission before the age of 12 or 13. Most BCECTS is not treated with antiepileptic drugs, which did not sit well with Jason when I passed that info on to him. He (We) feel better right now with him on the antiseizure drugs.

We meet with the pediatric neurologist next Thursday so I will find out more then.

Introduction

My name is Michelle. I am a 32 year old mother of two boys. I have been married to my husband, Jason, for 12 years. We live in a small town west of Kalamazoo, Michigan. I started homeschooling in the fall of 2004.

My oldest son, Westin, 10, was diagnosed with type 1 diabetes at the tender age of 2. By the time he was 8 he was diagnosed with celiac disease (he can't eat gluten) which is also an autoimmune disease, like type 1 diabetes and shortly before that he was diagnosed with asthma. Now, just this weekend he was diagnosed with epilepsy.

Westin loves to play video games and isn't into doing any sort of homeschool work. He isn't naturally inquisitive and that makes teaching a challenge. I try to embrace what he loves and find ways to incorporate it into a little extra learning. There are some things that can be learned from video games, believe it or not.

My youngest son, Wieland, is 2 years old and healthy, so far. As a mother of a child with all these problems, you can see why I say "so far". He is a very inquisitive boy and I look forward to homeschooling him.

I want this blog to document the trials, the joys and the issues in homeschooling and caring for a child with many medical needs. I wish it to be funny, yet informative. I hope you enjoy. Oh, and I want it to be therapeutic to me, as I need it! :)