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

Tag Archive: clozapine

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.

image

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/

Dec 30 2011

6th Antibody Infusion: IV placed

Gavin’s IV is finally in ace and the IgG infusion has begun.  The whole process takes a few hours but as time goes by,  and his body continues to tolerate the infusion,  the process will be sped up.

He did pretty well with the IV placement. He repeatedly asked the same questions over and over again but he’s didn’t scream.

They drew blood so that he doesn’t need a second needle poker on Monday in order to refill his Clozapine prescription.

He’s back to playing Phineas and Ferb on the PS3 and has phased everyone,  and everything,  out.

Now we just wait…….

image

image

image

image

image

Posted from WordPress for Android

Permanent link to this article: http://lostandtired.com/2011/12/30/6th-antibody-infusion-iv-placed/

Dec 02 2011

5th Antibody Infusion: Prepped and ready to go

image

image

image

image

Gavin is now all prepped and ready to go.  The nurse is about ready to place the IV as his meds have kicked in by now. 

She will also draw Gavin’s blood so he won’t need to have a second needle stick today for his now biweekly bloodwork for his Clozapine refills.  That just means less trauma for Gavin and less drama for everyone involved.

Permanent link to this article: http://lostandtired.com/2011/12/02/5th-antibody-infusion-prepped-and-ready-to-go/

Nov 28 2011

Medication Monday

I met with Dr.  Reynolds this morning about Gavin.  Beginning tomorrow,  Gavin’s Clozapine dosage will be increased from 100mg in the AM and 200mg in the PM to 200mg in the AM and 200mg in the PM. 

Gavin is manic and so we have to adjust accordingly in order to stay ahead of the curve. 

He also said that we should stay home over the Christmas holiday.  He said Gavin can’t take the excitement and will likely become more unraveled.  We can’t let that happen so we will just have to make do.

We also decided that I need to have the uncomfortable conversation with the school about Gavin’s sexual aggression.  Not a pleasant conversation,  trust me.

We go back in 2 weeks for a medication follow up. Sigh….

Permanent link to this article: http://lostandtired.com/2011/11/28/medication-monday/

Oct 20 2011

Medication Miracles

As many of you are already aware, Gavin has been on a necessary but crazy amount of medications for a long time (See: My interview on CNN). Gavin was taking almost 9 different medications per day. This was necessary in order to help manage some of his health and mental health issues. As much as we hated to have him take these medication, they improved the quality of his life and the results were tough to argue.

With that said, my wife and I feel very strongly about constantly reviewing the need for medications. Meaning that, if they are needed, we don’t want him to take them. Our doctors are very good and reevaluating the need for medications and are by no means overzealous about prescribing them. While it may seem excessive, It’s important to note that Gavin is very, very complex and breaks the mold in many areas. So, for most children this may have been excessive, however, with Gavin is really wasn’t.

Anyway, on with the update.

I’m very excited to be able to say that currently, Gavin is down down to 4 medications. He’s on Clozapine to manage the Schizoaffective Disorder, Lithium to manage the Bipolar side of the Schizoaffective Disorder, reflux and asthma meds. Oh..and a multivitamin.

This is a major accomplishment for Gavin. He will need the Clozapine and Lithium long term and well as the asthma and reflux medications but this marks a significant decrease in the amount of medication he needs to essentially survive everyday life.

Whether or not this stays this way is yet to be determined. Gavin is constantly changing and the need for more medications may present itself at some point. We will however, cross that bridge when we get to it.

For now, I’m glad to have been able to remove some of the medications from his life and even happier that he is maintaining without them. :-)

 

Permanent link to this article: http://lostandtired.com/2011/10/20/medication-miracles/

Sep 21 2011

Managing medications

Gavin and I are at Dr.  Reynolds office for a follow up.  Dr.  Reynolds is Gavin’s primary psychiatrist and someone on our short list of trustables

We haven’t seen Dr.  Reynolds since Gavin’s immune system problems were discovered.  So that means basically all of the new neurological issues are on the agenda today.

I don’t think any medication changes are likely.

However,  one thing Dr. Glazer stressed was just how dangerous and even life threatening Gavin taking Clozapine is.

Clozapine is the antipsychotic that Gavin has been on for most of this year. He has been on every other antipsychotic there is and they stopped working.  Clozapine was a last resort.

The big concern over Clozapine is that it can destroy the immune system by killing off the white blood cells, causing death, secondary to things like flu or pneumonia.  Alot of people in Europe died as a result of not knowing the side effects or properly monitoring the effects.  Many of those that died were, unfortunately, children. 

That is why Clozapine is so tightly controlled in the United States. 

However,  because it’s so tightly monitored,  it’s also one of the safest as well.  Gavin requires bloodwork every week in order to get another weeks supply.

For the record,  Gavin’s immunologist said Gavin’s immunodeficiency has nothing to do with the Clozapine because Gavin’s white blood cells are fine but his IgG and IgM and defective and very,  very low. Most likely a genetic disorder.

Anyway,  when you have a child on hardcore medications like Gavin is on,or even medications in general,  it’s always good to periodically reevaluate the risk versus the benefit.  We do this every couple of months but discuss medications at each appointment.

If anyone has questions on medications,  don’t hesitate to ask.  Gavin has been on many medications and I would be happy to share our experience.

image

- Lost and Tired

Posted by WordPress for Android via Tegra 2 powered Motorola Photon 4G (provided to me at no charge by Sprint) without the use of proper editing tools and disadvantages of a bastardized version of auto-correct.

Please Vote for Lost and Tired (just click the link) and help me spread Autism Awareness. Everyone can Vote once a day :)

MyFreeCopyright.com Registered & Protected

Permanent link to this article: http://lostandtired.com/2011/09/21/managing-medications/

Jul 05 2011

Off to get Gavin’s bloodwork done

Gavin has his weekly bloodwork this afternoon as a result of the anti-psychotic clozapine.. There are going to be a few more vials drawn today then usual because the gastro is going to check for celiac markers and a few other things as well.  I suggested we wait to do this until today so that it could all be done in one stick instead of making him endure 2 separate blood draws.

Gavin is still doing OK with the bloodwork. Although, lately he does add a bit of drama to the mix. However, we are light years ahead of where we were last year. It used to take up to 9 people to get the blood. It was very stressful for Gavin and everyone else involved. So great job Gavin for continuing to do so well.

- Lost and Tired

Post by WordPress for Android via Nexus S 4G with out the use of proper editing tools and auto-correct.

Please Vote for Lost and Tired (just click the link) and help me spread Autism Awareness. Everyone can Vote once a day :)

MyFreeCopyright.com Registered & Protected

Related Posts Plugin for WordPress, Blogger...

Permanent link to this article: http://lostandtired.com/2011/07/05/off-to-get-gavins-bloodwork-done/

Older posts «