Saturday, January 5, 2008

Losing my mind...

I have been struggling with the decision of whether or not to put Jaysen back on medication. He did so awesome on the Risperdal, but he did have a significant weight gain, and a TD scare. When I pulled him off of the med, I vowed that I would not put him back on unless his anxiety returned to the point that it had gotten.

My dilemma is:
His anxiety is back up, but it's not due to his lack of self-regulation. It's because of the issues going on at school. Putting him back on, will help him regain focus. I hesitate, because if the district were doing their job, he should be able to handle it without medication. But in reality...they're not doing their job. I fear that 1st grad is totally a wash, and now I'm trying to lay the groundwork for 2nd grade. I also seethe at the thought that the school will take full credit at Jaysen's turnaround, and think that they don't need to provide the support he needs.

The pros: More focused, more verbal, less combative, increased cooperation, willing to participate, increased social skills...

The cons: Could make the school lazy, weight gain, potential major side effects, having to medicate him without him knowing...

I'm sure there are a bunch more, I'm just listing a few of each.

My question to all of the parents out there, whether you medicate or not- what was the deciding factor to your choice? To those parents that do medicate- what medications have you tried that were successful/unsuccessful? Has anyone gone the Risperdal route before? What kind of side effects have you encountered?

Jaysen's scare with TD on Risperdal in the past, freaked me right out.
The neurologist explained that TD doesn't manifest until the puberty years, so he was certain it was not TD (that's where Tourette came in). That's not to say that TD wouldn't surface after a few years of using the med.

But he did so well on it...

If the school were doing their part, this would be a non-issue. Jaysen's behavior at home has been fine. In school, it's a different story. He started out just being "non-compliant", which grew to refusing to do anything at all, and has turned out to be combative, with a splash of physical aggression. But they're setting him off. The teacher admittedly doesn't know how to interact with him. They're not allowing for accommodations, which raises his anxiety, and he goes into fight-or-flight. Everyone thought he was easier to manage on the med, and that didn't sit well with me. They liked the Risperdal-Jaysen. Risperdal-Jaysen is easier.

Just recently, this behavior has started to trickle into the home. I know I can handle it, but unfortunately, he's not with me for the majority of the day. He's talking to himself more, and isolating more.

Ugggggh. Why does this have to be such a difficult decision? I shouldn't feel like it's a lifetime commitment, but I do. I feel like since my child can't communicate to me what he's feeling inside, what the problems are, or how to help him, I am unable to make such a decision for him and feel certain I'm making the best choice.

My question to all of the parents out there, whether you medicate or not- what was the deciding factor to your choice?
To those parents that do medicate- what medications have you tried that were successful/unsuccessful?
Has anyone gone the Risperdal route before, long term?
What kind of side effects have you encountered?

Now excuse me while I go self medicate with a glass of wine.


Jodi said...

We didn't start medication until my son was 15 after trying everything else: changing school placements included. When there was absolutely nothing else to try, we put him on meds. We have tried Paxil, Risperdal, Zoloft, Prozac and Cytomel. All of them had their ups and downs. Right now we are finding some success with Prozac and Cytomel with Xanax as needed.
Risperdal turned him into an absolute Zombie. He lost his personality. When he wasn't a Zombie was totally OCD about food. Wouldn't stop asking for it...I mean for hours refusing to go to bed because he wanted to eat, eat, eat. After we took him off I found out that diabetes is a real risk with Risperdal. That really scared me as his doc never mentioned this side affect.

misha_k said...

Thanks for stopping by and commenting. I can understand the uncertainty about having our kids on medication. It's a tough call to make. Here's our experiences with medications, if you don't mind a long comment.

J has been on medication since he was three. It was a tough decision to make but it was something I had to do and I feel J has benefitted from it. I don't use it to control him, or as I saw someone elsewhere say "parent" him. He takes meds to help him. He was a lot like how you describe Jaysen when not on meds.

I began with Risperdal and it helped tremendously. The only problem I saw was that J developed a series of tics. Each one lasted a couple of months then went away. It was a predictable pattern. His psychiatrist closely watched the tics to make sure they didn't become permanent. If they went over two months he would have been off the medication. It never came to that. Eventually, though, the Risperdal wasn't effective anymore.

As he grew J was on different combinations of medications. Some he's been on and eventually off were Welbutrin, Tenex and Zyprexa. All worked well except for the Tenex. That made him incredibly agitated and he was quickly taken off of it. And the Zyprexa had concerns that it caused diabetes. Because Lilly Pharmaceuticals agreed to pay out on a settlement from a lawsuit I had J taken off of it. The Zyprexa also made J very subdued and just not wanting to participate in class or interact with his peers.

He's almost eleven now and he's on Strattera, Clonidine and Abilify. The first two - been a while, the Abilify, under a year. It may seem like a lot but again these meds help him not parent him. He actively particpates in class and interacts with his peers and the combination of meds has helped that. He also eats a healthy diet so I feel the meds compliment that as well.

I don't know if the meds will be a permanent fixture in J's life. He's learning how to regulate himself and understand his emotions. I wouldn't be surprised if he's off meds completely in the future.

I don't know if this helps at all. I hope maybe just a little bit. Enjoy that glass of wine. We all deserve it once and a while.

Casdok said...

Difficult one.
Autosm Vox has recently done a post on Risperadal you may be interested to read.
C has been on beta blockers and Risperdal(he actually lost weight)for his headbanging which is life threatening, neither helped in this. It was more about the staff learning how to intereact better.So i felt it unfair to medicate C as staff cant cope.

I also self medicate with wine!!

Elissa - Managing Autism said...

I'll admit too, wine is great self-medication!!

Sorry I'm no help as we haven't gone down the road of medication yet... my heart goes out to you though, it's certainly not an easy decision for any parent :-(


mommy~dearest said...

Jodi-Jaysen's psychiatrist is great. She did make me aware of the risk of diabetes right up front, and was going to order bloodwork to monitor his lipid and glucose levels every 3 months.

Misha-He did develop tics as well. He's actually always had some, but I noticed they were more pronounced at times on the Risperdal. That's what led us to the neurologist, and he was dually diagnosed with Tourette Syndrome. He said the tics were the TS, and not from the Risperdal.

Casdok- That's exactly where my quandry is. I don't feel it fair to put him back on the meds because staff can't cope. However, the meds will help them cope, and in turn, may help him.

Thank you all for your comments!

misha_k said...

J was being watched for Tourettes too because of the tics. His psychiatrist, and I forgot to mention his neurologist too, watched him closely while on Risperdal.

Ashley's Mom said...

I have two children on Risperdal, and it has had a positive effect on their behavior. I'm not sure in my case that the school could have done anything differently that would have precluded me from going the Risperdal route.

My oldest daughter is diagnosed with Reactive Attachment Disorder, common in older adopted kids. It manifests as outbursts of rage and aggression. The Risperdal has made a huge difference for her. Before Risperdal, the school was having to call the police (justifiably) at least once a month to help with her aggressive outbursts. Since Risperdal, not one call.

My youngest daughter, also adopted, is diagnosed with fetal alcohol syndrome. Unfortunately, aggressive behaivor can come with that also. Risperdal has helped her a great deal, and I have seen no side effects. Even the initial weight gain, I believe, was more a result of pre-puberty and puberty than the actual medication.

All 4 of my kids, with disabilities or not, had a prtty significant weight gain just before puberty set in. Once puberty came in full force, they have all shot up in height and lost weight. My oldest son and daughter, both 17, have leveled out now to a normal weight - not too heavy, not too skinny.

Risperdal has been good in my family, but I will continue to monitor for the onset of TD symptoms.

Mary P Jones (MPJ) said...

No meds here yet, but I'm definitely willing to consider them in the future. I'm so angry at the school on your behalf -- we have been facing a similar situation. There were some changes at school, and that always causes my son anxiety.

He began refusing to do anything and the school didn't know how to handle it -- although he was fine at home. They wanted the problem to go away without any work on their part.

It's so frustrating and infuriating. Our kids are hurting, the school is hurting them, yet they expect us to fix it somehow -- through medication, through some kind of miracle parenting. Argh!

I don't know what to tell you other than that the situation sucks, that I sympathize and that I'm keeping you in my thoughts.

Marla said...

Good luck with this decision. Never easy to figure out. If medication helps him get through this difficult time it may be worth it and continuing to work with the school at the same time. Good luck and keep us posted. Hugs.

mom2spiritedboy said...

I read your post yesterday and have been mulling over my response. You have really hit a chord with me as we are going through a very similar situation right now. We put C on Ritalin at age 5 after much soul searching. It was the best thing we ever did. That worked for a few years, then the OCD really hit. All the professionals we work with have been suggesting a trial of meds for the anxiety for 2 years. I "caved" at the end of last summer when he was so wrought with anxiety his fingers were raw from chewing and he was up until all hours every night worrying about people. The trial did not go very well in the long run but I did see some positives - namely being more "connected" with people and not being "stuck" on things. But the side effects far outweighed the benefits. He's now just on Concerta but I still feel like we need to help him with the anxiety and he's not in a place to do it through therapy. We've avoided Risperdal but I'm starting to wonder. Good luck in your choice - it's never easy.

Val said...

I never tried meds until I was 22, but then again, my parents were in denial for most of my childhood (come to think of it, my father still is).

That said, my p-doc tried me on Abilify for a while, but it caused me to have Restless Leg Syndrome (and my father's nickname for me already is Rotisserie butt). Not good.

So then I got switched to Invega, which is like Risperdal's better developed offspring. It really seems to work for me and I'm on the lowest dose (3 mg). In fact, if they made a lower dose, I would take that instead. It takes the major edge off of my anxiety, allowing me to not only think about anxiety causing events, but also to go through with DOING anxiety causing events. So like I can drive to the supermarket and not have an ulcer before I get there. You know?

I can interact daily with people and not be wigging out on them. Most importantly though, I can sleep and I can sleep well. And my stimming is greatly reduced because my anxiety/tension levels are also greatly reduced.

I'm also on Effexor and Adderall.

I just wish that I had had this stuff when I was a kid. Maybe I could have stood up for myself or something, I don't know. My stomach problems have also greatly reduced, leaving me to wonder if my lactose intolerance isn't actually a definite thing, but rather just stress induced.

My senior year in high school, I dropped to 122 pounds; compared to previous years at 140 or a little more. I dropped because my anxiety was so high that number 1, I couldn't force myself to eat much, and number 2, when I did eat, I just got sick.

I'm at 150 pounds now and a large amount of that is muscle that I did not have, because I couldn't find the strength to do anything back in the day.

Anonymous said...

I feel for you. We tried to have my Asperger's son dxed for years but no one would believe something was wrong with him--until he hit first grade. Then all of a sudden it was like "WTF? This kid's messed up!!!" You think?
Boy, aren't the school people smart??

Since then it's been trying to keep them at arms' length since he can be explosive and he is scripted and you never know what will come out of his mouth. We tried Strattera; nothing. We tried Adderall--tics. OMG, tics that have not stopped to this day, three years after we stopped the meds. We had TSS so they had a babysitter. We stopped that, when the TSS worker finally said, "why am I there again?"

So now he's on his own. And I'm waiting for your kind of incident. Any day. I'll add you to the prayer list. :)


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Anonymous said...

After my experience with psychiatry I would warn anyone away from it! It's a long story. Maybe I'll come back and type out the thing sometime. At least wait until they're old enough to decide for themselves. I'm still living with drug damage.

mommy~dearest said...

Yes, Anon- please come back!