Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.


Thursday, December 28, 2006

Medication Skepticism

Sandis had his psychiatric assessment today. The whole psychological evaluation/psychiatric evaluation thing to me is a tad confusing. I'll explain so you can be confused and somewhat frustrated with me. The psychologist does all of the evaluations. She will distribute standardized surveys and questionnaires to teachers, caregivers, day care staff, and parents to try and gather information based on a the standardized psychological axes. She (the psychologist) will spend quite a bit of time in interaction with the child and has an EXTENSIVE interview with the parent discussing concerns and behaviors, and again, doing a standardized survey and questionnaire. After the many hours you and your child spend with this psychologist, they assess the surveys and standardized questionnaires and intersperse that information with their own observations garnered from time spent with the child and what was discussed in the parent interview. The psychologist then makes an educated guess as to what they believe the diagnosis to be. They are not qualified to actually make a diagnosis, but they ARE qualified to recommend a diagnosis based on all of the information they have gathered and quantified.

The psychiatrist, then, takes the written evaluation summary from the psychologist, spends five minutes one on one with your child, and has limited conversation with the parent. After this short and usually long-awaited visit, they pull a diagnosis from their hat which from here on out will be this child's official medical diagnosis (ie. diagnosis from a medical doctor, EXTREMELY IMPORTATNT!)

Does this seem backwards to you? I mean, I don't mean to discredit all of the psychiatrists out there, but it seems to me that they read a bunch of information about my son gathered from other people, and basically they can say yay or nay to diagnoses recommended by the psychologists (you know, the folks who spent any real time with my son) based on their limited exposure to my son.


Anyhow, medical diagnoses are absolutely necessary to qualify for disability medicaid programs, SSI, and most other services that are obtainable from government sources. So this psychiatrist visit is absolutely necessary to ensure that all services Sandis needs are able to be provided.

Today's visit wasn't bad at all. The psychiatrist handed over the PDD-NOS primary and ADHD-NOS secondary without batting an eyelash. He did mention that Sandis's ADHD is atypical as it is not constant and is prevalant in certain situations that are predictable. Well, I could have told him that anyway.

Then came the drug pushing......

I am skeptical about medicating my child. When I was 23 I was assaulted and my neck was injured. I endured constant pain for a couple of years, and I was "medicated" for my pain with narcotic pain meds. I was also treated for Generalized Anxiety Disorder. One medication led to another. I followed the doctor's orders. I took the medication as prescribed, but the pain persisted as did the anxiety. Over the course of a few years one med tacked on top of another med tacked on top of another. The true sources of my problems were never treated, only the symptoms. I ended up in drug treatment for fentanyl addiction two years after this medication journey began. It was a horrible experience. Coming out from the depths was excruciatingly painful. What I put my family through during the worst of my addiction is more than shameful. I do not intend to lessen my part in my addiction with this, but I truly wish that my doctors had first attempted to help me with a solution other than the solution that is found on a prescription pad. Not a quick-fix, but a solution to help me manage my pain (other than addictive meds) and a plan to help me manage my anxiety. Granted I didn't ask for this, but only coming out of the depths of an intense drug addiction did I ask for something different. I remember all of this, and because of my experience, medicating my son is not going to be my first option. It also won't be my second, third, fourth, or fifth. It will be my last and it will more than likely be a choice made in desperation. Well, maybe not that bad....but it gets my point across how low on my list of treatment options medication is.

So the psychiatrist feels that perhaps Risperdal would be a good option for Sandis. The most common side affects are: gain of 15% of body weight, in-alertness (isn't that what it is supposed to be helping?), lack of energy.....He said that risperdal is one of the only medications studied in treating children on the autism spectrum. (That is fine, but why does it fit my son?) He said that it has been shown to help improve transitioning, improve adaptability, reduce aggression, and reduce disruptive behavior. Granted, my son needs help in ALL of these areas. The psychiatrist also told me that even though I am loving and tolerant of Sandis's ineptness in social situations, for the most part other people will not be tolerant and this will cause Sandis many painful problems in the future. I understand that too. Although that is a painful thing to think about, I think it is my responsibility to address the pros and cons of this treatment.

I told the psychiatrist that as of yet Sandis has had no IEP interventions at school (we are working on that) and will start Occupational and Speech therapy in January. I told him that I feel the most comfortable waiting until Sandis has had an opportunity to be in OT and ST and have his IEP up and rolling and see if things improve. I stated that I would be willing to re-evaluate my stance on medication in the future, once Sandis has had an opportunity to have other interventions.

The psychiatrist seemed okay with that, but I did go home with about 15 pages of information on...................Risperdal

Ya well, I had to humor him eh?


Maddy said...

We are still debating the medication issue for our two boys. They're so young that I just keep putting off making any decision at all. [ostrich]
I was pretty dumbfounded by the clinical delivery of their [my boys] diagnoses too. I think [hope] it's just professional detachment, afterall it wouldn't help much if they broke in tears too.
Best wishes

Scott K. Johnson said...

Ehhh - tough decision to make, especially with the background on where you've come from.

My first thought is to spend some time praying on it. I'm sure you don't need me to tell you that, but it's what popped into my head.

Maddy said...

Can't get your email to work with my Firefox [not a very technically minded person] but I remember that moment when I was handed the 'papers' and expected to read them all too clearly.
Best wishes

Minnesota Nice said...

Sarah, you are an experienced medical consumer and very determined woman, but I know it's not easy by far.
Our society always wants to "fix it with a pill".
The whole psychologist/psychiatrist deal sounds like a mishmash of subjective opinions, yet, I suppose you have to give them some credit for knowing what they're doing. Is the clinic in St CLoud or down here?

Mark said...

Bravo for you for resisting the medication!

My husband has a diagnosis of manic-depression, i.e. bi-polar disorder. He takes meds willfully of his own accord, and I support that decision. It was made after a manic episode in which he tried (with far too much success) to tear the door off our mini-van; which means there was due cause.

However, my three children have never been on medications for their autism and they are making marked improvements. For "controling," better yet managing, the hyperactivity and such I strongly recommend you try the sensory regulation. If you want a detailed list of some techniques to try immediately (i.e., without the book I cited), I can provide that for you. Just send me an e-mail.

Mark said...

BTW, there are other ways to get an autism diagnosis without going through the circus hoops you went through. Just in case you need to know for the future, you can usually find someone along the neurologist bent (neuro-psychologist?) that's got the whole doctor thing going for them and can expedite the process. It took me three tries to figure that out, though.

Amberthyme said...

I know you'll do what is right in your heart and what ends up being the best for Sandis. I am of the same opinion: drugs are beyond the last resort.

Lucky for Therin, the only person who pushes medication didn't really have anything to do with his diagnosis.
We haven't even done a whole lot of OT (well, professionally directed OT at school, we have followed Therin's lead for years at home before diagnosis and then have had "ah ha" moments for example the "squish me" game is the deep pressure sensation) and she was eager to suggest medication before even an OT evaluation.
In your post you said:
"The psychiatrist also told me that even though I am loving and tolerant of Sandis's ineptness in social situations, for the most part other people will not be tolerant and this will cause Sandis many painful problems in the future."
You are surrounding your self and your children with people who ARE loving and tolerant. Don't we try and teach all of our children whether or not they have special needs to find friends that accept them for who they are?
Anyhow, I think you're on the right path.