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

Random Stuff About Mason

Overall, Mason is doing quite well right now. Here are the nitty gritty details:

Potty Training

Ughhhh. Will it ever happen? He tells me "poop" after the fact. I've been loaned a little device that sounds an alarm at the first sign of moisture. (I'll spare the rest of the details) The thing I'm waiting for is my memory. I keep forgetting to use it. 

Mason will be turning ten at the end of March. I figure that we've changed about eighteen thousand diapers in the last ten years. Many rather disturbing ones.

Nights

Not too bad. Mason is still waking every night, but he settles quicker most of the time. I have also been not turning on the baby monitor. So I don't get up until he's banging the walls and yelling "Mommy!!!". I go to him right away if he's having a bad dream and screaming from that. I'm not a totally non-responsive mom!  

Mason has been falling asleep within five minutes of going to bed. It would take him an hour or two to fall asleep over the previous months. He sleeps through the night 2 - 4 times per month. Last night was one of them! 

Then there are sleep positions. He falls out of bed every once in a while for moving around so much in his sleep. Last night I checked him before I went to bed. I so wished my camera battery had been charged! He was sitting cross-legged with his head on the bed in front of him - asleep! Another night Daryl got up to Mason's crying. He found him partially fallen out of bed with both hands on the floor, rest of his body in the bed, stuck.

Behaviour, Anxiety, and Seizures

Huge improvements! :) The doctors said I could play around with the Risperidone in how much to give Mason and when. So in the end, it works best for him in the morning. I can see when it takes effect. Mason often wakes up rather aggressively. He kinda explodes out of his room some mornings. After about 45 minutes I see the change. With each change I made in the

 medication, I saw his seizures increase quite a lot. I also know that it takes about a week or two for the side effects to diminish or go away completely. So I decided to wait it out. Sure enough, the seizures reduced again. In fact, we hardly see any now (2 - 4 per day?). And what we do see is so extremely mild. My theory is that the Risperidone has reduced his anxiety which has, in turn, reduced the seizures. Anxiety and excitement are well known triggers for increasing seizures in someone with Epilepsy.

Development

It continues to amaze us that Mason is still learning and progressing at a rapid pace! Speech is the most evident right now. Most of his words are still partial and we don't always know what he's saying. Sometimes, when we don't get it, he tries a different word that has a similar meaning or explains the first one he was trying to say!  

He is stringing words together to make partial sentences. He knows he's doing it, and he is trying so hard. There are days that he is an endless chatterbox. When my ears and brain start to hurt from it, I remind myself "this is a very good thing". 

All the speech also reveals to us what's inside his head. He has a sharp memory! We can't tell him something and hope he'll forget. He also understands nearly everything we say.

Burp! Fart! Two of his favorite words. Most uncomfortable when he shouts them out in public! But put him in the same room with other boys that find that funny!?!!! Boys are SOOO different than girls!  

Interests

Mason has to do EVERYTHING we do. If the girls are baking, Mason's right in there. So we have devised an alternative for him! We give him a bowl of flour, add some pepper or cinnamon, something that contrasts the white of the flour, give him a spoon and he is a happy boy stirring.

Mason loves to paint. "taint" in his language. 

Coloring is also a favorite. he even tries drawing certain things like hearts and circles and grass. :) A little while back I watched him draw and name the things he was drawing. I had never seen him do that before!

Hair. He loves getting his hair done up with gel. Loves getting his hair cut and highlighted. You should see him look at himself in the mirror!

Playing with cars, Webkinz on the computer, reading - well having us read to him , bubbles and baths are also lots of fun. :) Occasionally, he plays on his own for a while.

Medical Stuff and Doctors

So we had a few appointments with the psychiatrist. They went very well. We  got a partial evaluation and are waiting for an appointment for the big evaluation at Sunny Hill. So far they have seen indicators of anxiety, autism and ADHD. 

Blood work has not yet been taken. I have a sort of appointment for someone to come to our house this Tuesday, Feb 24 at 8 am. So if any of you want to use your powerful muscles to help me out that morning, give me a call! 

I've gone blank on some of the funny things he does. There are plenty of stories with this boy!

Well, I should go. He has plunked himself down in my computer chair, waiting impatiently to play Webkinz - lots of  noise in my ears here..... Did I mention that his volume control is broken?

Prayer Request for Travis

Occasionally I put up a prayer request for someone I know. I have one today for my dear friend,  Suzanne, in Michigan. We met online a number of years ago because of our boys. (there are always good things that happen in the midst of even extreme difficulties!) She has a son with Epilepsy who is a few years older than Mason. She has been an amazing encouragement to me over the years. I always know that she knows what I'm going through when she says thinks like, " Mason reminds me so much of Travis at that age!" That also means that she herself has felt the way I have on many, many occasions. And I understand her current fear. Her faith in God has been a huge inspiration to me. Yes, Suzanne is an amazing mom, friend, and sister in Christ!

Here lies the need for prayer: Travis, who is going through puberty, has been experiencing some frightening break-through seizures. He's been doing better over the last few years, but recently the seizures have been getting out of control again. They, too, have experimented with many medications and treatments. I have read that puberty can cause significant changes to a seizure disorder, and as Suzanne says, there's not much that can be done about puberty. Mason's not there yet, so I haven't looked into it that much. 

Coming up:

- adjusting medications for Travis

- Travis will be going into the hospital for a few days for intensive EEG monitoring. Just like Mason, Travis cannot understand what's going on when they wrap him up and physically subdue him while they glue 25 - 30 'leads' onto his head, then keep him hooked up to a computer for those days, as well as constantly videoing him. ( I"ll inform you when they have a date)

- Other stuff. Some forms of Epilepsy are very unpredictable, especially the more severe kinds. So there may be other medical tests coming up, as well as unpredictable changes in Travis.

- Pray for the doctors. That God will give them amazing wisdom, knowledge and discernment in understanding precisely what is going on, and abilities to treat Travis effectively without harmful side effects. 

- Suzanne and husband and other son. Such changes in seizures, along with the up-coming tests, are very difficult on a mom and the rest of the family. 

from Suzanne: "... nothing stronger than the power of prayer on our behalf.  Mostly I'm praying for the seizures to just get under control - I've been praying much bolder lately and asking for a miracle - what a story to tell.  Thanks for thinking of me and Travis!!"

We are all placed where we are for a purpose beyond ourselves and our own happiness and fulfillment. We are here to come alongside others, just as God has been there for us. (my paraphrase of 2 Corinthians 1) 

Please join me in coming alongside Suzanne and her family.

Thank you, friends.

The Birth of IMAGINE Ministries

I have some very, very, exciting news!

We are only a few weeks away from launching Imagine Ministries!

This is a program designed for FAMILIES of children with special needs. When you have a child with any type of disability, it is very difficult to attend many community functions. Church is one of those difficult places to attend because there is seldom an appropriate place for the kids to be. We seldom attend church all together as a family. Mason either goes to Grandpa and Grandma's house, or Daryl and I take turns going to church with the girls. When we do take Mason along, we usually end up walking the halls, bugging the person in the library, pulling the public phone off the wall (he actually did that a few years ago) or Daryl often ends up taking Mason to Starbucks.

We have had help at times, which was great! But there still was not an appropriate room for Mason. He doesn't learn anything in the grade 4 classroom because his comprehension level is that of a 2 or 3 year old.

Here's the quickie version:
~ It will be available for the Saturday night service at Northview Community Church in Abbotsford (northview.org)
~ Each child will have a one-on-one caregiver
~ Caregivers will be interviewed and trained
~ Available to EVERYONE - the whole community! :) not just church members
~ A classroom is being renovated for sensory reasons, and will have a trampoline with handle bars, great toys, a private change table area, and more!
~ There will be free play time, KidsTown (Sunday school) worship/singing time, structured classroom time with stories and songs, colouring and crafts.
~ We will be implementing a buddy system with typical kids

Contact myself or Robyn at imagine@northview.org if you have a child with special needs or want information about volunteering.

So how did this begin?

Fall of 2007 was the first time I heard that Willingdon Church in Burnaby had a program for kids with special needs called Imagine. That was when I started bugging our new Children's pastor, Robyn about getting it to Northview. Then I heard she had been the pastor at Willingdon when it started there! She started waiting for someone to take it on. So half a year later, spring of 2008, when nothing had happened I met with Robyn to let her know I would help get things started, while we more actively looked for someone to direct it. I told her, "I have no time for this, and no passion for it." I knew it was needed and would do what I had to in order to get it going. Little things here and there started to happen, but no leader.

A week and a half ago my friend Thaleia shared her story of obeying God when she really didn't want to go where he was sending her. The very day she arrived, he gave her an unexplainable joy! I asked her how this whole experience had changed her life. I can't remember her exact quote, actually she doesn't either... but it was something to this effect: She learned that she needs to obey God no matter what her feelings were. She obeyed, kicking and screaming, but she obeyed. Feeling good about what God wants us to do is not a prerequisite. Feeling good once we do it is also not a guarantee.

Prior to this, there were some Bible verses that kept popping up in different places.
Isaiah 58:10-11 if you pour yourself out for the hungry and satisfy the desire of the afflicted, then shall your light rise in the darkness and your gloom be as the noonday. And the Lord will guide you continually and satisfy your desire in scorched places and make your bones strong; and you shall be like a watered garden, like a spring of water, whose waters do not fail.

Satisfy the desires of the afflicted ... satisfy the desires of the afflicted. Even now as I write this my emotions well up. Our community, Abbotsford, has so very many families, with a child with disabilities, that have desires. Desires to be accepted in a public setting. To not feel out of place. To not be on edge, wondering if the person looking at them is going to say something hurtful because of the behavior of their child or because of the way their child looks. Wondering of they will have the energy to go out.

afflicted
adjective
1.	grievously affected especially by disease
2.	mentally or physically unfit

Does that describe kids with special needs or what! ( I would differ with the unfit part, but that word is not used according to God's view of these kids,although that's the way society often sees them)

Anyway... these were the two nudges, Thaleia's experience (interesting note here: she went on her mission's trip last fall and did not have the opportunity to share her experience in our pastorate until recently...hmmmm interesting timing!), and the Word of God. So .... the next day I said yes to God and popped in at Robyn's office to tell her the news that I would fully take on Imagine Ministries, "add me as the contact person".

Was I crazy? Yup. I was exhausted from waking at night all the time with Mason, changes in his behaviour, new doctors to see (it's amazing how energy-draining a new investigation and seeing new doctors is!) etc, etc (just read my posts over these past months!). My brain was totally fried, I would go into the garage, I don't know how many times a day, and just stand there because I had no clue why I was there. I would do that when driving as well. No clue where I was going. So I would just keep heading in that direction until it came back to me. My kids are used to me making lots of U-turns anyway, so they didn't even notice! I had begun a Theology course, but gave it up because my brain could not process anything. (that was brutally difficult for me to do. I love studying) I was taking huge naps every day, laying around on the couch ... That's what I do when I'm depleted...

So this is where faith steps in. Believing in and following God even when and ESPECIALLY when it doesn't feel comfortable! Taking on something new when I couldn't even handle what I already had! People very often quote that God will not give us more than we can handle. Yet, he does give us more than we can handle! I think he gives us beyond what we can handle, so that we will ask him for help. That is when he steps in and does amazing things! If we are handling it, we don't need him. In 2 Peter the author is talking about how God has rescued different people, and even angels. Then he says this: "if this is so, then the Lord knows how to rescue godly men from trials".

So, an amazing thing happened the next day. I woke up refreshed and renewed. And it was not because I was excited about the Imagine Ministries. When I talked to Robyn, I was still wondering how on earth I was going to do it, and I still did not feel like doing it! On Thursday my gloomy feelings instantly turned to light, where I felt scorched, God was guiding me, and I felt strong again after feeling so weak for so long. The scripture was coming true in a way I have never experienced before! Ideas started pouring in, everything started to fall into place in amazing ways! I am totally awestruck by what God is doing!

This past weekend we had our first promotion looking for volunteers for Imagine with a video of different parents and their kids with special needs. Robyn and I were available after each service. We had 25 volunteers sign up!!! Incredible! If you were one, thank you! If you're going to be one, thank you! If you're praying for us, thank you! :) This means we can accept more children!

I'll be letting you know about some other WONDERFUL things that are happening, but I can't tell you yet! It's a SURPRISE!

Our God is an awesome God!!!!!!!!!!!!

Company for the ride in

Hi Everyone. Two items here:

1. I have an appointment with Mason's psychiatrist at Children's Hospital on Tuesday morning at 10 am. He does not have to come along. That means I am going in alone and do not get to use the HOV lane. So, is there anyone out there that would like to spend the day with me? (then I can use the HOV Lane and shave off a lot of driving time) Here are the details:
Leave at 8 am
10 am appointment (lasts about an hour)
IKEA!!!!!
home by 2 or 2:30 at the latest (gotta pick kids up from school - but always have a back-up plan)

2. The blood test has not yet happened. We went in, but SOMEONE forgot to read the fine print. (Mason can't read, so obviously it must have been someone in charge of him) He is supposed to fast for 10 hours first. So that means an early morning blood test (after not eating all night). The complication is that the wait at the clinic is always LONG in the morning, because so many people have to fast for their blood work, and they don't take appointments. I cannot see Mason hanging out in a medical clinic for an hour or more. So I contacted our Health Unit nurse to see if she could do it at home. There is a program where a nurse will come to our house, I first have to get a requisition from our doctor. So when I have that in place, I will be asking for help again.

Volunteer

I need to take Mason for blood-work this week. It always requires 4 people to do it. Usually there are 2 technicians, me, then I need one more. Daryl's no good. He gets all wimpy and tries to talk me out of doing it. I'll double-check with the clinic when the best time to go is, but I think it's around noon when it's least busy.

So let me know if you'd like to assist me. He fights us off, so you have to be prepared for lots of screaming and kicking etc.

Thanks....

Answers.... sort of.....

I saw Mason's psychiatrists today. (there are two) They see many things affecting Mason and we will begin implementing some stuff. I will be going back to see them in two weeks. These are some first steps:

- sleep - intensify Mason's bedtime routine with pic symbols. (pictures showing the sequence of the details of the bedtime routine) I don't know how that will help for 5 am.

- anxiety - I need to read and gather more information to understand it.

- emotional development - Mason had NO emotional development for the 5 years of intense seizures before his brain surgery. So now, with three years of reduced seizures, that part of his brain has had a chance to develop. ( the stuff you take for granted when your children are typical!)

- medication - apparently there is some link with omega 3 fatty acids helping with anxiety. I'm supposed to give him 3 grams per day. Risperidone - There is room to play with the dose, but comes with weight gain as a side effect. They are hoping to deal with his problems in such a way that we could perhaps take him off the Risperidone in 6 months or so.

- Autism?? - They are going to refer Mason to Sunny Hill Hospital in Vancouver to asses him for Autism. In the past, the seizures have been so overpowering that they masked anything else he could have. I kinda don't think they'll come back with an Autism diagnosis, but it would be nice to have the label! The label gets us more funding to help him.

- Behavioural Intervention - I have to keep records of his behaviours over the next couple of weeks. So when he has a 'tantrum' or explosion, is defiant or oppositional, I need to write down what happened before, what the behaviour looks like and what happens after (consequence). We will also be looking into Behavioural intervention.

The quick bite is that there will be a number of appointments coming up and significant changes in our routine at home. Yes I have routine, it may not look like a routine, or actually be routine, but it is! What will actually have to be implemented is more STRUCTURE!! UGH!!! Many of you may not understand this, but this will be exhausting for me. Bottom line is: Mason likes structure, I don't. Mason does well with structure, I don't. Maybe it's ME that needs a behavioural interventionist. I'm sure my dear husband would agree. Those of you who know me well, know that this will definitely stretch me. When Mason was on the Ketogenic Diet I had to be extremely structured for those 6 months. It took all my energy. So I'm not looking forward to that much structure again. At least we're starting with small bites like bedtime.

I needed to vent. I'll probably do it some more.......

Today's appointment has confirmed my suspicion that we are entering another "New Normal". This will be round 3. The first was when the seizures started, 8 1/2 years ago. It took me a year and a half to find that new" normal". The second time was after brain surgery. Mason changed drastically and I had to find my feet again, as his mom and in family dynamics, and what that all meant for our family. That time it only took 9 months to a year or so. Hopefully this next phase of life, involving psychiatric issues, will not take too long to adapt to.

ttfn!
ps did I tell you I don't much care for too much structure? There are a lot of things I take in stride. Structure = kicking and screaming.

Life

One of my favorite albums is "Satisfy" by Kathryn Scott, which I was just listening to. This song is my prayer so often, especially now. I am reminded again that there is nothing and no one that will meet my needs, not even sleep, like Jesus will. He restores my hope and life. He does satisfy.

Breathe on Me Now

When my soul has cried its tears
And my heart begins to faint
Will You draw near
Will You meet with me

When my days are filled with longing
And my spirit groans and waits
Will You draw near
Will You meet with me

I'm calling and waiting
Your presence Lord is life to me

Breathe on me now as I bow down
I'm desperate Lord for more of You
Come satisfy until I
Am even more in need of You

When my dreams have been forgotten
And my hope begins to fade
Will You draw near
Will You meet with me

When my days are filled with searching
And my strength has given way
Will You draw near
Will You meet with me

I'm calling and waiting
Your presence Lord is life to me

Breathe on me now as I bow down
I'm desperate Lord for more of You
Come satisfy until I
Am even more in need of You

Another Sleep!!

Yes!! Mason slept through the night last night!!! AND woke up dry!!! Two nights in a week! I have been praying (actually begging) that Jesus would help Mason to sleep through the night. So I figure if I'm asking for that, may as well ask for a dry bed! :) He does not always say yes, but often enough (twice!) to give me a break.

Also, I gave him the Risperidol ( the anti-psychotic) only in the morning today. He's been VERY calm and co-operative today. Wow, what a change. But then his seizures are way up, which also have a sedating effect. So I don't know what is calming him, but it was the first relaxing evening with Mason at home in a really long time.

It's just after 11 pm and after laying in bed, quietly, for a LONG time Mason has just fallen asleep. Was it because he, too, is not used to a good night's sleep?!?!

First Appointtment with the Psychiatrist

We saw the psychiatrist at Children's Hospital last week Wednesday. It was an hour and a half of questions with a follow-up appointment shceduled on January 20.

We have no real answers yet, but I know it will be a lot of trial and error.

So far: When I was asked what I wanted out of this process, I said that I just want to understand what is going on, then go from there.

When I asked her (Dr. Chapman) what she thought so far, she said there definitely was an anxiety component, but with Mason's seizures, other meds, behaviours, etc it is very complex. They will be evaluating everything and hopefully have some answers next time. Most likely Mason will be officially diagnosed with anxiety disorder.

In the mean time, she said I could try different times and doses of the Risperidal. So I've given some during the day instead of bedtime. We have seen less anxiety during the day. We have also seen a big increase in seizures. He had an increase in night seizures when we started this medication, but they seemed to settle a bit after a while. So I'm just going to wait it out and hope the seizures lessen.

As Mason continues to develop cognitively and in speech, he is also much more aware of his seizures. They have been upsetting and frightening him in the last couple of months. I feel so sad for him, especially when he has several seizures within a short period.

So how is this affecting the family? It's not been easy. In fact, it's been more difficult than it has been in several years. For myself, I have become quite accustomed to figuring out what is going on in regards to seizures and seizure medications. I understand that stuff. Anxiety is a whole new ball game. It feels like I've stepped off the bottom step without a floor to step on to. Just waiting for my foot to hit something solid. Dealing with the extreme behaviours, aggression, screaming, and stubborn defiance takes a lot more of my time and energy, which will, of course, take that away from the girls and Daryl making balance in our family difficult to acheive. Thankfully the girls are at an age of being able to reason, so we can talk things through. And Asia made tacos for supper tonight, which was a treat!! Beats what I would have made: crackers and cheese again!!

Good things:
- Mason is going to bed easier again
- For the last two nights he has settled quickly when he wakes at night
- Mason even slept through the night once and woke up without having soaked the bed for the first time in nearly a year!
- Some easier daytime behaviours
- Did I say Asia made supper?!?!

Difficult things:
- Sleep deprivation for me which does a number on my memory and energy, as well as my health.
- Mason waking every night, sometimes multiple times, (except that one night!)
- Mason soaks the bed every night. So I have to change him and his bedding in the middle of the night. I prefer sleep, thank you very much!
- He's not progressing in potty training, although his teacher at school is determined to do it. She's amazing!!!
- I have more frequent days that I "crash". Overwhelmed by it all.

In spite of all this, we are thrilled over and over by what Mason is saying and understanding. He's been putting together a string of words into sentences many times per day. Not all the words are understandable, but often we know what he is saying! Today, as Daryl was getting ready for bed, Mason said, "Papa" as he was removing his shirt. Daryl commented, " did you wear your shirt to Grandpa's?". Mason said, "No, gift". He was wearing the shirt he got for Christmas from Grandpa and Grandma! His memory is sharp. He knows what's coming up next in every episode of Mickey Mouse Clubhouse on TV. They do a lot of counting on that show, yet, that concept has not yet registered with Mason. Along with the toilet training.

Mason desperately wanted to open gifts before Christmas. He would sit down with a gift on his lap, finger positioned in a little gap, face looking up at us eagerly. Heartbreak when we said no. So one day I asked him if his name was on the gift. I pointed at the name and he said the correct name. Although he cannot read (he can't even say his own name), he does recognize his sisters' names and mommy and daddy. He seemed to understand these were not his gifts. The next gift we looked at said to Shirley from Asia (she's 14 and gives us some occasional attitude... LOL). Mason looked at my name and said "Mommy". That was a shock. We are convinced over and over that Mason understands much more than we realize. It appears that there are areas of his brain that are functioning well, and others minimally. I wish the toilet training part of his brain would work!!! Please!!!!! At least all his diapers, bed pads, wipes etc are provided. :)

Well, off I go. Thanks for listening. And I know that God does, too. I've been asking and begging for long dry nights, and He's given me one, plus others that are more manageable. Will you continue to join me in this? Thanks!!

Psychiatrist Appointment and more

Mason has an appointment to see a psychiatrist at Children's for January 7. So that's good, nice and quick. Maybe we can get some more insight into what's going on with the boy. The Risperidone is helping, so that's good, but hopefully a short term fix as we deal with the long term behaviours. Behavioural issues will be something we will always have to deal with, as Mason does not have the capability to understand and reason as we do. With him getting bigger, they will be harder to manage. He is almost 10 and is taller and heavier than average. He is also very solid and strong.

Mason has slept straight through the night all the way until 7:30 am two days in a row!!!!! I actually woke just before my alarm today!! I don't think Mason has had two full nights in a row since the spring, therefore... I haven't either! Except when he's been away for an overnight respite.

Mason is loving the snow. Anyone want to hire him? He does "random " snow shoveling! Shovels the snow wherever he feels like it. This is at school yesterday.

He also LOVES "art"! btw, doesn't a Santa scarf go great with a Hawaiian shirt?

Day 10

It's been ten days, now, since we started the new med. It's been very up and down. Over all, the daytime behaviours have settled. Our idea of "settled" is still stressful, but he cooperates more often :). Some days are better than others. We increased the dose on day 8.

On day 7, Mason had an "episode". He had been doing well all day and evening being the sweetest little boy. Suddenly, in a matter of a split second, his alter-ego appeared and he started screaming, freaking out, and thrashing the Christmas tree, stripping one side of it's ornaments. After a minute or two he calmed slightly and spent the next few minutes sobbing like crazy on the couch. It was heartbreaking to see him swing so wildly. I could not figure out a trigger, it was so random. I really don't know what to expect each day, or even each hour.

Mason has had a few good nights this week :) He even slept in until 9:30 today with waking only once at night for his usual seizures! Not that I slept in...I lay there waiting...

Mason had a blast this morning decorating a gingerbread house with his sisters. He even restrained himself from eating the candies until the decorating was finished!

Mason has been referred to a psychiatrist at Children's. We expect to see her soon in the new year.

Meds 101:
If you're not familiar with medications here's a little lesson!

- It usually takes 1 - 2 weeks for side effects to settle down.
- Some side effects go away
- Some side effects do not ever go away
- Some side effects linger, but are minimal

Honeymoon period: Medications are often effective for a period of time then become less effective - ranging from slight changes to not working at all. Sometimes they can even have the opposite effect that was intended. As a result, Mason has been on 12 - 15 different meds, up to 4 at one time. Thankfully Daryl has great prescription coverage at work! Most of the pills have been quite expensive.

Some medical conditions are resistant to any treatment. Lennox Gastaut Syndrome is such a condition. Most forms of Epilepsy respond positively to medication. There are a few types that do not and LGS is one of them.

Currently Mason is on one type of seizure medication. I don't think it is doing anything for him at all. In fact, as we went down on it, Mason had less seizures. This has happened with others as well. (all seizure meds have listed that they could actually increase seizures. If taken by someone without seizures, it could induce them)

With Epilepsy, everything is trial and error. We have always been told that we would try something and hopefully it would work. Even the most specialized specialists in neurology cannot predict what will happen in LGS.

Carrying on, one day at a time..... Shirley

Seizures

Mason had some unusual seizures at night. They scared him. :( Probably from the new meds. It usually takes at least a week or two for any side effects to subside, so we'll wait it out.

There could be another reason for the increase in seizures. Christmas! All the excitement of the lights and Santa could be doing it. Many kids with seizures have more at this time of year. They have to avoid the malls, lights, Christmas programs, etc. It never used to bother Mason because he was in such a fog all the time that he wasn't even aware. We had to open his gifts for him. he didn't have a clue what was going on. In the last couple of years that has changed! Now he has to open everyone's gifts!!

testing the subscribe stuff

testing the subscribe stuff

Try subscribing at the left. I don't know if it works yet.

It works!! :) Cool!

Day 4 on New Meds

Today was the first day that Mason was home all day since starting Risperidone. He was pretty calm. He even watched a whole Rudolph movie in the morning!!! It's been at least half a year since he stayed in one spot that long. Lately he's done 20 minutes on a very good day, and those have been extremely rare.

It's still a little early to tell how well the medication is working. This could be the "honeymoon" period. We've had a lot of honeymoons over the years!! One time it was two whole weeks from a new med. He was seizure free for three weeks after brain surgery.

It was incredible to have a whole day without the screaming and the violence! :) :) :) We even decorated the Christmas tree today! Mason did something I have never seen him do before. He was able to hook the tiny wire hangers onto the plastic ornaments, and had the patience to do it, as well. He has very poor fine motor skills, so this is progress.

He had two of the stronger seizures this morning and had to lie down for about ten minutes after the second one. This is the first time a seizure has made him tired since he had surgery over three years ago. This new medication has the potential side effect of increased seizures. If it increases this much in the long run, that's just fine by me.