Autism, Aspergers, Rob Gorski,Special Needs Parenting, Reactive Attachment Disorder, Fibromyalgia,

Tag Archive: side

Dec 17 2012

When I first met my wife

This whole thing with losing Rogue today has brought up a lot of old memories.  It’s sorta funny how something like this can spark so many memories, long buried and forgotten and bring them to the surface for you to relive.

The events of Sunday have certainly done that for me.

I had completely forgotten that Rogue was by my side when I laid eyes on the woman that would become my best friend, my wife and the mother of my children, for the very first time.

If it wasn’t for Rogue, I would never have been at the park that day. That being the case, mine and Lizze’s paths may never have crossed.

For that reason alone, I will be forever grateful to my overly enthusiast and always shedding   Australian Shepherd.

Permanent link to this article: http://lostandtired.com/2012/12/17/when-i-first-met-my-wife/

Dec 03 2012

Operation Hope: Medication Monday

Today is going to be a day of medication changes for the Lost and Tired family.  I’ve already discussed Elliott’s situation but I haven’t explained Gavin‘s. 

Tonight, Gavin will begin taking ativan as a means of suppressing his constantly elevated heart rate.

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We’re going intobthis knowing that there are some serious risk factors.  The combination of the ativan and the clozapine that he’s already on increases the risks of side effects for both drugs.

The ativan isn’t as big of a deal but the clozapine is.  Clozapine is the most tightly controlled medication in the United States. It’s been responsible for many deaths in the EU. The most serious and deadly side effect has to do with the destruction of immune system. 

If safely controlled and tightly monitored, Clozapine is an amazing anti- psychotic. In Gavin‘s case, it’s the last medication in this category that he has available to him. He has suffered no side effects and he has been on it well over a year now. 
He went from weekly blood work to biweekly blood work. Currently, he gets his blood work done one a month. 

The chances of any serious happening advantage result of the combination, should be minimal at this point

I know it may seem like a big risk. However, leaving his heart rate out of control is even more dangerous at this point.  Basically, it’s the lesser of the two evils. I’m not thrilled about this but we literally don’t have any other options at this point.  We have some of the best neurological minds in the world working on this and right now, this is our best shot.  

Lizze’s parents will have to watch him closely but that’s something they will do very well. 

It’s bad timing to begin this now but we have put it off for too long and honestly, it’s always going to be a bad time. 

Please keep Gvain in your thoughts and prayers. 

Permanent link to this article: http://lostandtired.com/2012/12/03/operation-hope-medication-monday/

Nov 28 2012

Operation Hope: New problems and tough decisions

I mentioned the other night that we had some more concerning news about Gavin‘s autonomic issues.  His specialist at the Cleveland Clinic decided that the pros outweighed the constant when it came to adding Ativan to Gavin‘s daily medication routine. 

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You may remember that this was discussed briefly before Thanksgiving the doctor that was filling in for Gavin‘s doctor was not comfortable do this and pulled the plug. 

However, Gavin doctor is back and pushing forward anyway with Ativan.

I actually picked it up from the pharmacy yesterday.  The pharmacist was uncomfortable with this as well and went on the record as stating just that. 

Here’s the problem.

Gavin‘s heart rate is still out of control. The Ativan is supposed to help suppress his heart rate and bring it down to a more normal range, thus making him a bit more stabilized. No one is disputing that.

The concern is how the Ativan is known to interact with Clozapine. Clozapine is the most tightly control medication in the country and a very hard core anti-psychotic. Clozapine can have very serious and even fatal side effects of not closely monitored. That’s why it’s so tightly controlled. 

Apparently, the combination of the Ativan and the Clozapine is known to increase the risks of side effect for each respective medication.

This is one of those situations where, as a parent, we have to weigh the pros and cons of a situation and do what we feel is best. 

In this situation, there is a increased risk of side effects.  Gavin has been on the Clozapine for well over a year and is generally considered to be at little risk for side effects now.  We don’t know that anything bad will happen.

Having said that, we do know for sure, that Gavin‘s heart rate cannot be allowed to continue the way it is.  It’s too high and basically means that Gavin is in a state of constant autonomic crisis. At least to some degree anyway. 

It basically comes down to this.  Something bad may happen by adding the Ativan.  However, something bad is going to happen if we don’t get Gavin‘s heart rate under control.

It’s a horrible position to be in.

The reason we have decided to go forward with this is because Gavin‘s doctor is among the best in the world at what he does. We also know that there is a difference between a potential problem and an accident waiting to happen.

This wasn’t something to decide lightly but based in the information at hand, this was the best decision.

It doesn’t feel good to be in this position and have to make these types of decisions. At no point in life, does anyone ever teach you to be prepared for this type of situation, let alone what to do. There’s no guide book for this.  Trust me I’ve looked. 

Of course, the symptoms we are supposed to be looking for could be difficult to notice in even the most typical of children.

The reality is, Gavin is many things but typical is not one of them.

I will say that this weighing pretty heavy on me at the moment because with Gavin not being home, I have to rely on others to makes sure nothing happens.

I hate this situation. 

Permanent link to this article: http://lostandtired.com/2012/11/28/operation-hope-new-problems-and-tough-decisions/

Jul 22 2012

Attacking a special needs family

The police showed up at my house a few minutes ago.  Someone,  decided that we weren’t going through enough already. They decided to create more drama and turmoil in our lives.

A few years ago,  one of my neighbors from a few doors down was drunk and driving his car all over the neighborhood. 

Up and down the allies and through people’s yards.  One of those yards,  happened to be mine.  He drove through my yard with such speed that he literally sheered the Do Not Enter sign off, flush with the ground. He barely missed my car as well.

I wrote about it at the time but can’t find the post to link back to.  :-(

The sign has set in my back yard since then. No one ever came to put it back into the ground.

Fast forward to this evening and one of my compassionate,  understanding and we’ll meaning neighbors,  decided that they would call the police and report that I stole the sign and stashed it in my back yard. 

Ironically,  I believe it may have been some of the friends and family of the idiot that sheered the sign off in the first place, that called the police. They all watched from their front porch as the police walked up onto my porch and confronted me about the sign.

However,  one of the officers was a very good friend of mine.  We went to grade school and high school together.

Their plan to cause us distress had failed.  My friend and his partner hung out for a bit and caught up.  I showed them the sign and explained what happened. It was obvious that the sign wasn’t stolen and was run over.  For one thing,  I wasn’t hiding it very well.  It has been leaned up against the side of my house,  out in the open for years.

My friend reported what had actually happened and said the city would be out in the morning to fix the sign and relieve me of the burden of storing it. 

When the officers left,  we shook hands,  while my neighbors watched.  My buddy said that he was going to look after us,  now that he knows we live here. 

My guess is that when my neighbors decided to try and hurt us,  this is not how they had envisioned it going.  All they succeeded in doing was making me realize how badly we need to get out of this neighborhood.  However, until that day comes,  at least I have a someone watching out for us now.

To my so called neighbors,  and I use that term loosely, I just want to say that we are much stronger than you think we are. We may appear weak to you because of all the challenges we face.  However,  it’s only because of your ignorance that you don’t see the truth.  You live your lives trying to hurt others and make them as miserable as you are. 

My family is stronger because we work to build people up.  Despite all of the challenges we face,  we are always trying to help others.  Yes,  my children are different as you are aware.  I know this because I’ve heard the word retard used more than once,  when describing my kids. 

However,  despite all the challenges they face,  they are now and always will be better than you.  They are kind and compassionate.  They can show empathy and love.  They would never target those they perceived to be weak.  In fact,  they would stand side by side,  as would I,  with those that can’t stand up for themselves. 

I feel sorry for you.  I hope that someday you realize that the path you’ve chosen in life will lead you nowhere. 

You have my sympathy not my anger.

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Permanent link to this article: http://lostandtired.com/2012/07/22/attacking-a-special-needs-family/

Permanent link to this article: http://lostandtired.com/2012/06/14/not-a-good-morning/

May 28 2012

Trying to see the bright side

Man,  today has been a crappy day. Between the issues with Gavin and the overstimulation of the other boys,  I’m exhausted. The back tire on the van needs replaced and Lizze Nook broke.

We spent the afternoon at my parents house and had a nice cookout.

However,  when I got home,  I found we no internet.  Time Warner had shut is off,  even though that collected a post dated check from us a few days ago. Apparently,  it was an oversight,  but the department that can fix the issue won’t be open until Tuesday. I spoke with 4 different people at customer service and no one could fix it.  I wasn’t even hung up on by a supervisor.

Very frustrating….

Last night,  Elliott and I repaired one of our dinning room chairs.  After we glued the legs back in place I had to force one of the pieces back in with the palm of my hand and ended up actually bruising it.  It being the palm of my hand.

I am so ready for this day to be over but it’s not yet. 

It’s so friggin weird without internet.  I mean,  we still have enough our phones but it still disrupts my plans for tonight.  For one thing,  I have a review to post that will be delayed now because I can’t do that for my phone.  Not a huge deal but still. 

I guess it will just be a really quite night. That may actually be a good thing.  :-)

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**Thanks for reading**

       -Lost and Tired

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Posted from WordPress for Android so please forgive any typos as auto correct and I don’t get along very well sometimes.

Permanent link to this article: http://lostandtired.com/2012/05/28/trying-to-see-the-bright-side/

May 21 2012

Waiting for news and reconnecting with old friends

Lizze and Gavin are at Akron Children’s Hospital and I just finished getting the boys down.

It’s frustrating as I’m only getting bits and pieces of information.  The waiting to find out what’s going on is really difficult.

On the positive side,  I’ve been chatting,  via Google Talk with my friend,  “dreams”,  from back when I was actively developing on Android. It’s nice to reconnect with old friends. 

Hopefully,  I’ll hear something from Lizze soon.  I really hate waiting.  Having said that,  no news is good news.

**Thanks for reading**

       -Lost and Tired

Please join our Autism Help Forum

Look for “Autism Help” app at the Google Play Store

MyFreeCopyright.com Registered & Protected

Posted from WordPress for Android

Permanent link to this article: http://lostandtired.com/2012/05/21/waiting-for-news-and-reconnecting-with-old-friends/

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