Decisions, decisions

The other night someone made a comment on of my posts that really got me thinking. Well actually, I had already been thinking about this already, but the comment kind forced me to REALLY start thinking if you know what I mean.

You can read the comment here, Comment by Sarah

Now, when we first put our son on Risperdal, it was a really difficult decision based on recommendations from two different specialists in two different fields, but both with experience and knowledge about behavioural problems and medication. We always intended for it to be for a relatively short term and at a low dose. The benefits of the medication could not be denied. The difference in our son was enormous. He was calmer, less aggressive and better able to function. With him being able to stop and process better, we had a much better chance for any behavioural therapies to work.

He went along improving faster than he ever had before for about 6 months before we started to notice that we were getting a little frustrated again and having to tell him to calm down more than we were used to now. It was a gradual increase and it took us a while to realise that the ‘problem’ may have been that he had grown and needed a slightly higher dose of Risperdal. The Ritalin was still working well for concentration. So, with the Pead’s consent, we upped the dose a little. Now he is on 1.25ml of the medication. Still a very low dose. His behaviour started improving again, and we were able to ramp up all the good stuff were doing with him.

In the last two weeks, as I mentioned in my previous post, we started noticing some of his anxious behaviours coming back again. He was covering his ears when buses passed us while out riding bikes and walking. He would actually stop his bike and pull it away against the opposite side from the road to cover his ears until the bus had passed. This never really bothered him before. He was also starting up with his aggressive threats and angry behaviour for no real reason. His arguing had increased and he was avoiding school work vehemently again.

Now, there could have been a couple of other factors involved in this change of behaviour. Not just his growth and need of another higher dose of medication. He had desperately wanted a particular toy, so, (despite what I have written about ‘reward’ charts) I set up a chart that ran for two weeks. It was based around him completing each day; certain helpful things around the house. He had to do his morning jobs without being asked twice (eat breakfast, take Ritalin, feed the animals). He had to complete his school work without complaining and causing Mummy to waste a lot of time getting him to do it. He had to do one helpful job like empty the dishwasher, take the rubbish out etc. He did this. Every day for two weeks, he was simply awesome. He really worked hard to do all those things.

We also made it very clear that once he had the toy, he had to continue that behaviour, that the chart was merely a way to get him into the habit of doing all those things, and that we wouldn’t be giving him a toy for doing those jobs in the future. He understood and agreed. He got the toy, and his behaviour started going down hill. It could have been coincidence or it might have had something to do with the getting of the toy.

The weather has been sucky for a couple of weeks, that sometimes affects his sleep and general mood. There is also our parenting techniques, we slip a little when he’s behaving ‘normally’ for lengthy periods. We forget to watch what we say, to speak in a kind nice way all the time. It’s only human because that style is really hard to keep up all the time especially when you are tired or annoyed yourself. There are a few more things, but the point is, I guess there are factors other than medication that affect his behaviour.

First thing I started doing was double checking the basics. We got back on track with our parenting techniques. I made sure we hadn’t let too many chemicals or preservatives back into his diet, even though we know that he doesn’t have any intolerances or allergies to stuff. We were fine in that department. I was pleased to see that my cupboards and fridge were still in keeping with the most chemical free food we could have. I even went back to the Fail Safe people’s website and checked their recommended shopping list, and found that I have pretty much everything suggested, and some things from their list I don’t buy because they aren’t necessary in his diet, or I make it fresh myself. So all good there.

So that means we were back to the fact that he’s grown heaps in the last 4 months, and must need a bigger dose of the medication. We were just discussing increasing that dose when Sarah’s comment came through. It made me do more research again on Risperdal, or any antipsychotic. That in turn made my discomfort about these medications’ long term results return.

I started to think, am I willing to keep increasing the dose of this medication every time he grows or his behaviours come back? Does that make logical sense to me? I decided not really. I had worked out that if you smack a child and the behaviours come back, you don’t simply increase the intensity of the smack. If you keep telling a child not to do something, or you remove privileges and the behaviours come back, you don’t just increase the dose of those things. So, maybe it’s the same with medication. If I have to keep increasing the dose, doesn’t that mean that actually the medication is not really doing anything helpful long term? It’s simply keeping the situation/symptoms under control in the short term. It also makes us not know how much better or worse he really is without that medication. So the only conclusion down that road is a life time on this medication at higher and higher doses, which only increases the risk of side effects.

I don’t think I want to do that to be honest. So after much discussion with my husband, we thought we had decided to slowly start weaning him off the medication in the next 6 months. I felt better about that decision, even though I knew it was going to be harder work for us as parents.

Then on Friday I took my son to Occupational therapy. He had a really awesome play with the other boy, then started to feel uncomfortable at the end and wanted to control the game. It didn’t go his way and he got really mad. The session ended because he just walked out and the therapist came to tell the two waiting mums how it had gone. While we sat talking, my son went outside, then came back in with his metal drink bottle and swung it full pelt at the therapists head! She blocked it and caught his arm calmly and continued to name his feelings for him and calmly state that she could see he was mad but that she couldn’t allow him to hurt her. I took over and restrained him gently over with me. He started head butting me repeatedly, and I managed to avoid most of them except one that caught me on the side of the chin and bruised my jaw joint. Ouch.

After that, I was thinking, “ugh, we can’t be having all that fighting again! It’s too much hard work!” Back to putting the medication dose up!

Then after he had calmed down, which took only about 15 minutes, we went home. He put himself in the back seat of the car again, and all his furry toys in the front. (Punishing himself). He was quiet for a little while and then apologised to me for hurting my jaw. (I had remained silent this whole time… not only because my jaw hurt!). Then he started saying things that he could have done instead of getting so angry and trying to hurt people.

So, by the time my husband got home from work, I was back to the conclusion that we should reduce and remove the medication because although it’s a long hard process, we were already on the right track before we started the medication. We had started fixing our parenting and our family dynamic and we were already seeing huge improvements in his behaviours. Yes, he had had a full blown aggressive outburst, but he had calmed himself down and then actually thought about it later to find a solution to try next time. Now that doesn’t mean he’ll actually apply that solution next time. He may still lose it when it gets too much for him. But I’m seriously impressed that he actually wants to change it and thought of a way to make that happen. He’s getting closer.

We have an appointment with his Peadiatrician (Michael Kohn from the ABC documentary “Kids on Speed?”) on Tuesday, and I know he will probably try to persuade me against dropping the medication especially since it made such a positive change in his behaviour. I definitely think my son still needs Ritalin at the moment to concentrate on school work and keep his body in check, but that may change in the future.

I guess the important thing is for me to keep an open mind and remember that while I really hate this medication, the thing I need to keep at the front of my thoughts is what will be best for my son in the long term. If medicating him for another year so he can benefit from our parent assisted therapy and that of his psychologist and get more social practice, is the best thing, then that’s really what we should do before weaning him off.

Either way, it’s going to be a hard decision and not one to jump into either way lightly. I hate having to make these hard decisions and sometimes it just makes me tired and want to eat cupcakes! Better go and make some…..

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7 Responses to Decisions, decisions

  1. sarahk750 says:

    Hi Kathryn,
    Wonderful post. Im looking forward to reading peoples comments on this. You have made some tough decisions and you have more ahead of you. I agree with your logic about medication. And while I can see why you are considering maybe keeping Corey on risperdal for another year to help him respond to parent assisted therapy… the longer the medication is used the more dependant you will all become. If Corey uses the medication to better respond to behavioural techniques he will learn to rely less and less on his own abilities to self-control and more on the medication. While im not ruling out the possibility that it could happen…the idea that medication use helps someone get better self control gets less and less likely the longer they are on it.
    I also want to say that even though I don’t want to be too harsh about Dr Kohn, I REALLY question his abilities as a paediatrician after some of the things he said on he program. Especially the dietary advice he gave to samuel and emily when ritalin was causing weight loss. To me it shows a real lack of care for childrens long term health…I was really quite horrified! Ice cream after every meal and deep fried mars bars….take his medical advice with caution..
    Hoping for the best for all of you while you wrestle with some tough choices
    Sarah

    • KL says:

      Hi Sarah,

      Thanks :) I completely get what you are saying re reliance on the meds rather than on himself. I think the important thing to remember here is that we are aware of that, and will be aware of that for however long we have him on the meds. It may jut be a matter of the meds being needed to support US as much as him if we are struggling with anything other than his behaviours at the time. Either way, our limit will be two years, of which he has already been on it for one.

      In defence of Prof Kohn, he will never be a stand up comedian that’s for sure. What he suggested was suggested in jest in front of the children to get them excited at the idea of eating more. This is actually a method used by many of the best peadiatricians in the USA in centres where they have children who have food phobias due to things like being fed by tube for the younger years of their lives. They allow the kids to eat anything they want. I mean ANYTHING. They fill whole tables up with every possible junk food and healthy food and encourage the kids to use their hands and just eat whatever they fancy. I think Prof Kohn understood that the family already fed their children a health selection of food, and he was merely stressing the point that extra calories are important to these children. I’d be interested to see the rest of the 2 hours of consultation time and what was said in and around that comment. :) Don’t forget that what you see is only a snipped of things that a producer found amusing or they thought stressed the point better than anything else during that particular session.
      Thank you for reading and commenting on my blog. Not many people comment and I love to hear what other people have to say!
      Kat

  2. sarahk750 says:

    Woops sorry…I didnt think my other post from before came through so I wrote another one :/

    • KL says:

      No worries. I trashed the second one for you :)

      • sarahk750 says:

        Thanks for deleting my other comment :)
        Glad you are aware of the dependance factor of medication usage.
        I’m also glad Dr Kohn was joking…but I still think it was irresponsible…even if it was editors of the show who were at fault more than him. They didnt make it clear to the viewers that this was a joke suggestion. Sadly there are actually paediatricians out there that do advise that sort of diet for children who are adhd diagnosed…and they aren’t joking.
        I’m aware of the technique that paediatricians use for food phobias. I’m still not sure how I feel about it…but it is slightly different than what Dr Kohn (joking or not) was getting at. Samuel and Emily weren’t afraid of food, they were having their appetites unnaturally suppressed by ritalin and losing weight. The food phobia technique is ideally to help children get over their aversion so they can get back in to a healthy eating pattern. This wouldn’t work with children on ritalin because the appetite suppression would always be a factor. Calorie rich foods would always be needed because the “aversion” suppressing their appetite would be there for as long as ritalin was prescribed.
        Sorry to rant on your page ;)
        Sarah

  3. reditall says:

    Your rant, as you put it, is a passionate one and I’m sure you’ve also seen quite your fill of specialists. Though it seems your expectations of the specialists are bordering on perfection, which they can never live up to. Specialists are often described as clinical and lacking in good bed side manner, and I’ve often found this to be true, but I’m not going to heckle someone for trying to create a positive dialog to speak comfortably about the real issues and fears.
    This is just another form of trying to look at the reasons why someone has said something, not just what they have said, be they child or adult. Talking through issues or debating them is often a good way to understand both parties perception, as long as it is done is a positive and constructive manner.

    Now I’m finished my rant.

    • sarah says:

      Hi Reditall :)
      Yes I agree talking through issues and debating them in a positive and constructive manner is a good way for both parties to understand each other. And yes I am very passionate….please let me know if I seem offensive or rude because I don’t mean to…I enjoy a good discussion and debate…i just get passionate while doing so :)
      I hear what you are saying about my unrealistically high standards of perfection for clinicians. You might be right..but I really hope not.
      What exactly is it that I am I expecting that is unrealistically perfect? The bedside manner is not an issue for me…and neither is being clinical for that matter. My problem is that clinicians are just flat out lying. And they are getting away with it and making vulnerable families that trust them suffer.
      They should not be allowed to say that ADHD is caused by an imbalance of chemicals in the brain when they have no evidence for this (they may eventually discover this but to date they are still looking and they should just be honest about this and say so). They should not be allowed to say that medication treats chemical imbalances when it’s not what it actually does. They should not be allowed to give poor dietary advice to children and families when they know that the advice they give is going to be broadcast nationally to struggling families vulnerable families. They should not be allowed to prescribe heavy antidepressant and anti-psychotic medications to children that have not been tested nor been approved for paediatric use. I don’t think this is holding clinicians up to too high a standard. But it is really scary that as a society we have gotten to the point where it appears that way!

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