May 25 2011
Gavin and I are at Dr. R’s. We are following up on the Clozapine and reviewing Gavin’s progress.
While I completely agree with the medications I do have my concerns. Gavin’s chest pain for one. Most likely nothing, but it could also be related to the Clozapine. Gavin is also still forgetting things more frequently now. However, the hallucinations seemed to have stopped and that’s a GOOD thing.
Posted from WordPress for Android
Permanent link to this article: http://lostandtired.com/2011/05/25/a-clozapine-review/
May 21 2011
I haven’t been posting as much recently. Partly because I did most of my blogging from my phone and I didn’t have one until a few days ago (see the previous post for details on that). A lot of stuff has been going on. Quite a bit of stress and frustration. I’m not sure where to begin. I suppose I can just begin and see what happens.
This past week or so has been full of challenges. I threw my back out about a week ago trying to help neighbors with a larch branch that came down with one of the last storms we had. Lizze has been in a pretty rough place and there doesn’t seem to be any relief in sight. She has her headache infusion this coming week and I pray it helps. If it doesn’t then we are pretty much out of options and I don’t know what we are going to do.
I mentioned in an earlier post that my dad came by last week to help me clean out the gutters. What I didn’t mention at the time is what was discovered while cleaning out the gutters. The company that put on our new $30,000 roof 2 years ago SCREWED up in a pretty big way. They never replaced the fascia on at least one side of the house. It’s not completely exposed and dry rotted away leaving the roof line open. The gutters have to be pulled and quiet a bit of work needs to be done. The roofers and the gutter guys have issues that are causing the shingles along the roofline to break off. The really crappy part is that I don’t believe the company that did the work is still around. I have to call State Farm on Monday and discuss options.
Gavin’s medications got screwed up, specifically, the Clozapine. Gavin had his bloodwork this past Wednesday as usual. The lab faxed the results within one hour. We went he following morning to pick up the refill and it wasn’t there. Walgreen’s told me that they never received a fax. As I have stated before this medication is the most tightly controlled in the United States and so there is a VERY specific chain of events that MUST occur in order to get a refill. Lizze called the lab and they had proof it was faxed. Turns out Walgreen’s fax machine was down (and they knew it). The lab called Walgreen’s to report the results verbally but they couldn’t accept them. The director of the lab called Walgreen’s and reported the results and explained how serious missing a dose for Gavin is. Apparently the verbal report can ONLY come from the prescribing doctor himself. Long story short, Gavin missed a dose and so must most likely start over and lose 5 week worth of progress. We are waiting to hear back from Dr. R in order to know what we are supposed to do. For right now we are continuing as though it was never missed until otherwise instructed. I’m not totally sure if Walgreen’s is to blame for this or simply the process required by the government to refill this particular script. Walgreen’s should have some type of backup fax service and MANY scripts are faxed in by the doctor. Being down for almost and entire day because the fax machine itself is broken is unacceptable and irresponsible.
Aside from all that and a few other things happening that I won’t get into I have just been feeling……off. Maybe everything is just getting to me. Perhaps I’m beginning to crumble under all the pressure. I just know that I just can’t seem to maintain my focus. I suppose that’s understandable considering everything.
Permanent link to this article: http://lostandtired.com/2011/05/21/lets-play-catch-up/
May 18 2011
Gavin will be starting week 5 of his new meds. They seem to be helping so far, however, the bipolar side of things is out of whack. Meaning he is manic. He had a rough time with today’s blood work but still worlds ahead of where he was this time last year. Great job Gavin, we’re proud of you.
Posted on the go without the use of proper editing tools via Nexus S 4G
Permanent link to this article: http://lostandtired.com/2011/05/18/clozapine-week-5/
May 16 2011
Gavin is going on his 5th week of Clozapine now for Schizoaffective disorder. We are starting to see “potential” problems now that may or may not be related to the medications. Gavin has been having “accidents” at night lately. This is not normal for him and so it’s concerning for us. I’m wondering if he is just so sedated by the meds that he just dosen’t wake himself up to go to the bathroom.
He was sick last night and puked up his dinner and night time meds but was then fine. So we aren’t sure what that was all about. We suspect that it’s more of the “bowel” issues again. He says he hasn’t eaten any “nonfood” items lately. But that I his standard answer for when we ask him. We don’t usually find out till later that he wasn’t telling us the truth.
His overall demeanor is just “weird” for lack of a better word. He rambles on about incomprehensible things and then expects that we understand. I do my best to just smile and knod my way through it cause I don’t want to hurt his feelings. He isn’t having behavioral problems per say but he is struggling to follow simple 1 or 2 step tasks.
The main problem is deciding whether or not this is a natuaral phenomena with him (which is VERY likely) or if it’s medication induced. We are waiting to here back from Dr. R so we know what do do. The good thing is that all his blood work is good so that a positive thing. I write back when I know more….
Permanent link to this article: http://lostandtired.com/2011/05/16/possible-medication-problems/
Apr 26 2011
As many of you know, Gavin started on the medication Clozapine last week. He seems to be handling it pretty well. I messed up yesterday by forgetting the morning dose but I was able to fix it so we didn’t have to start over.
Lizze and I did some further research into the possible side effects and discovered that delirium is a possible side effect. That compounds our concerns because we have begun noticing changes in Gavin. He is appearing more confused then normal. He’s not remembering dates like he could normally. I was asking him things about his birthday last year that he couldn’t remember. This is VERY unusual for him. The question is whether or not the medication is at work here. He was already decompensating prior to the new meds and this would fall in line with that.
We will have to get in touch with Dr. R’s office and see what we should do, if anything. He does have his psychologist tonight so we’ll get some guidence there as well. We have to keep going with Clozapine if at all possible because we are out of other options.
-Lost and Tired
Posted using my Epic 4G on the fly and without the use of proper editing tools.
Permanent link to this article: http://lostandtired.com/2011/04/26/gavins-medication-woes/
Apr 22 2011
Many special needs children are on medications for various behavioral or medical conditions. This really isn’t any big secret. However, what many people don’t know is how difficult it can be to manage it sometimes. In our case Gavin is on 8 or 9 different medications for several different problems. We have mood
stabilizers, anti-anxiety, anti-psychotic, meds to help with the movement disorder and meds to help him sleep. He metabolizes medications EXTREMELY fast so they are constantly changing. I wrote in Special needs parenting and the “tough decisions” the other day about a MAJOR medication change on the horizon for Gavin.
We are starting the medication called Clozapine. This is a anti-psychotic medication and also the MOST TIGHTLY controlled medication in the entire United States.It requires weekly blood work in order to get the next weeks worth of pills. We were scheduled to begin this past Monday but were met with lots of “red tape” and several delays. Everything was finally resolved and we obtained the prescription this morning. I wanted to share with you all the instructions for taking this first i initial dose. This will be changing about every 10 days until we reach the maintenance dose.
We had dealt with MANY prescriptions in the past but never this complicated. This is requiring a great deal of scheduling because we ONLY get 7 pills at a time. If we make a mistake or miss a does we HAVE to start ALL OVER again. For some reason we only received 5 pills this time and the next refill is scheduled for April 27th. We will have to have more blood work done on Monday or Tuesday of this coming week.
With everything else we are having to keep track of this is going to be one of the most challenging things we taken on. In the past Gavin has missed his medications on rare occasion for various reasons like, illness, prescription delays or we just forgot. We’re not perfect and we are overloaded as it is so things like this have happened before. However, they CANNOT happen again or we will lose ALL the progress we have made in battling the schizophrenic side of the schizoaffective disorder. No pressure, right?
This is just one special needs child and one special needs family. There are many of us out there struggling with similar issues. This is also just one of the MANY challenges facing the special needs parent on a daily basis. I hope this gives you just a little bit more insight into the intricacies of special needs parenthood.
Permanent link to this article: http://lostandtired.com/2011/04/22/special-needs-kids-and-medication-management/
Apr 20 2011
We went to pick up the Clozapine prescription this morning and we were met with more “red tape” and further delays. Apparently Dr. R must have omitted a signature somewhere because the manufacturer wouldn’t release the medication to the pharmacy. Dr. R was out of the office today so we could not get this addressed today. Hopefully this will get fixed first thing in the morning. We did find out that the blood work results are good for 7 days, so we don’t have to worry about having to redraw his blood again. Hopefully everyone can get it together so we can get this done and get Gavin the help he desperately needs. This has been quite complicated already and we haven’t even started the Clozapine yet.
Here’s to hoping tomorrow is the day for new medications.
-lost and tired
Permanent link to this article: http://lostandtired.com/2011/04/20/clozapine-has-been-met-with-further-delays/
Rob Gorski is a husband and father of 3 boys on the Autism Spectrum. Gorski began his writing career in June of 2010 with his multiple award winning blog Lost and Tired: Confessions of an Autism Dad. Recently cited as the 3rd most influential Autism Blogger on the internet by Dr. Oz's Sharecare website, where he is an expert on Autism.
His mission is to create dialogue, spread Autism Awareness, educate the public on how technology can benefit a special needs family and do so in ways that society can relate to and understand.
Gorski advocates for special needs families and those on the Autism Spectrum, both young and old.
Find Me Here