Special needs kids and medication management

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.

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