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....
Sunday, January 25, 2009
Tuesday, January 20, 2009
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.
- 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.
Tuesday, January 13, 2009
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
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
Monday, January 12, 2009
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?!?!
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?!?!
Sunday, January 11, 2009
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!!
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!!
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