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!!

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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.

Day 2 on New Meds

So far it's difficult to tell exactly what the new medication, Risperidone, is doing. I think it may be taking the edge off Mason's impulses. They are still happening, but he's also been at school and away for respite tonight. He is still unusually hyper with a short attention span and extreme stubbornness. But we have seen no negative side effects so far!!!! :) :)

I spoke with a friend who is a nurse working with psychiatric patients. She is very familiar with this drug and was able to answer a lot of questions I had. Thanks ML!!!

Surrender

We have entered another difficult phase with Mason. He's been having an increase in difficult behaviours. Now remember, he is at a 2 - 3 year old age developmentally, but he is a big strong 9 year old boy. So that comes with some typical tantrums and boundary pushing. yet, with Mason, they accelerate to violent explosions instantly. That involves kicking, screaming, punching, biting and throwing furniture, including coffee tables, chairs and lamps. (The lamps actually still work! but we can't get the shades straight anymore.) He is also not sleeping most nights. It really escalated this past weekend and so I had a total meltdown on Monday. I talked to our social workers, a friend who has a child with a severe chronic condition as well, and our nurse at Children's hospital (she said it had been a long time since I cried on her). Mason seems to do much better when he is with other people though! That's something to be thankful for.

I can't say that we have figured out what's going on, but the nurse said they see this kind of thing happen a lot when the seizures come down. The seizures themselves act as a sedative, so now that Mason has less of them, he is more aware and alert, therefore wanting his own way a lot more. We see that in his increased comprehension and attempts at sentences. He is also on the lowest amount of medication he's been on.

So we are going to be trying out a new medication tonight. An anti-psychotic called Risperidone. It's a little bit scary. Although Mason has been on I don't know... fifteen different medications? This is a totally different category. He also has a tendency to paradoxical reactions to medications. One example is when we gave him Valium years ago to stop a seizure. I was told he would be very sleepy. He actually became so hyper that I couldn't even touch him for hours. The Risperidone is supposed to make him sleepy as well. It also has the potential to increase seizures, which I can easily live with right now. What it's supposed to do is settle him down and reduce his impulsiveness, as well as get him to sleep at night.

The other night he was awake a lot of the night. I slept in his bed with my arm across his chest and my leg across his legs to keep him down. I would doze off, and each time I woke, his eyes were open. I don't know if he was having seizures but most likely he was, as he does every night. I recalled how I used to hold Mason night after night in the rocking chair, seizure after seizure, singing "Jesus, All for Jesus" by Robin Mark. "All I am and have and ever hope to be". "All of my ambitions, hopes, and plans, I surrender these into Your hands". Many nights I couldn't even get past the first word of the song - "Jesus".

With that same song I now continue. "Jesus, all for Jesus". Once again we must surrender to Him our ambitions, hopes and plans. Jesus doesn't waste anything. :)

The Amazing Adventures of Mason

We are noticing that Mason is very observant and attempts to do whatever we do, or whatever he wants to do. Daryl and I were out last night and left Asia, who is 14, in charge of him. She told us this interesting story:
She had gone to the bathroom and when she got back, Mason had pulled up a stool to the kitchen gate and climbed over. He then pushed another stool up to the stove to get at the cupboard above to get the candle lighter. He then went and sat down at the kitchen counter with a cupcake. He put a candle into it and lit it. All this in a matter of a couple of minutes! Those brain synapses are working well!! Time to figure out a decent locking system in the kitchen that doesn't look funny!

Doors, doors, doors. All the doors on our main floor have keyed locks. Plus our deadbolts are keyed on both sides. He learned how to pick a bathroom lock when he was 2 1/2, so that's why the extra precautions. So we have a few tacks high up on the walls, way out of the reach of a 9 year old boy, to hook the keys on. Mason has figured out that if he throws something at it the key will fall off and BINGO, he can go into any room he wants and get into trouble. So it's back to the drawing board to find a new way to have the keys easily accessible, but not to the boy.

Another thing we'll have to be on the look out for is Mason climbing over the gate at the base of the stairs. I'm thinking barbed wire. Anyone have a better idea??