We saw the developmental pediatrician today. We were going to spend about 10-15 minutes talking about medication and the rest talking about behaviour managment issues. That was the plan. But we’ve been trying to sort out the dose on the patch, and not been having QUITE as much success as we’d like, so we ended up spending the entire 50 minute session working out medication ideas.
Essentially, the patch is working really well. But not exactly the way we’d like. At the lowest dose the patch comes in, his hyperactivity/impulsivity was still not controlled quite enough. At the next dose (50% higher), his hyperactivity/impulsivity was totally under control, but he became melancholy, lethargic, disinterested, and sad. So we moved him to 1 1/4 patches of the lower dose, which is a pain in the neck, but doable. Unfortunately, we still saw the mood side-effects, though to a lesser degree, which is just not okay. It’s very difficult, this balancing act. It breaks my heart. I don’t want to lose my vivacious little boy who is so full of life and love and energy and hope and beauty.
Switching to another stimulant isn’t really the answer, because we’ve been there, done that, and getting him to TAKE it is impossible, plus it would be just like using the patch – they’re all closely related. We know the patch is working, using more of another stimulant isn’t going to change what the patch is doing at this point.
So we’re going to augment with another medication entirely and work with that. We’ll give it a few days and see how it’s going and adjust the dose as necessary. Dr. S. is going to Ocean City this weekend and into next week. I feel like my lifeline is going away, even though he told me not to hesitate to call if I needed anything. I don’t want to call him on vacation. He reminded me that he knew when he decided that he would not sign over his practice except if he leaves the country, that this means that he gets interrupted on vacation for five minutes several times a day, and he’s okay with that. Still, I don’t like it one bit. That being said, we’ll probably NEED to be in touch, since we’re moving into starting a new medication and will need to be monitoring J pretty closely.
We’re starting at a teeny, tiny, ridiculously small dose. 0.2 ml of the medication (there are 1mg/ml). I’m hoping we can get J to even take it. Really, really hoping.
I feel this tremendous responsibility to J through all of this. I feel like we are manipulating him, in a sense. I suppose in a way, we are, though we are doing so to help him be able to function in a positive way. We want him to be able to learn optimally in a classroom, function socially like a normal preschooler/kindergartner, behave appropriate as a typical child in society. We want him to feel like he is in control of his little world, and like he has a positive effect on the world around him. We don’t want him receiving only negative feedback from teachers and friends. We don’t want him to be ostracized for his inability to control his impulses. Still, this manipulation is a tremendous responsibility. It’s difficult to know that we’re always making the right judgments. I wholeheartedly believe that we are doing the right thing by choosing to medicate him, as we are also choosing a behavior management approach in tandem with the medication trial. I just sometimes wonder if I’m adequately assessing the effects of the drug. What if I had a bad day and I’m looking at his behaviors through tinted glasses one day? What if I’m being unfair or biased? What if I’m not the RIGHT person for this job?
People see me with my triplets and they say, "You must be so tired" or "It must be so hard to parent triplets." But they never consider that the triplets are the easy part. They practically parent themselves right now. But every time I turn around, I feel like I’m doing the wrong thing with J. What if I accidentally yell at him and scar him for life? He’s so sensitive. What if I don’t give him enough positive feedback today? What if I don’t choose the right routine for him? What if I can’t find the right scenario to help him control his impulses to avoid the temper tantrum or conflict in the store? What if I make the wrong parenting choices today? What if I give the wrong input to the doctor and we choose the wrong medication based on faulty input from me? What if this has long term consequences that we didn’t know about?
These are the things they don’t tell you about in the parenting manual. These are the things I’m kind of glad I didn’t know about ahead of time. If I had, I might have chickened out and missed out on all the fun stuff.
ChezPerky 
The truth is that parenting is scary. Since we can only see the results of our decisions in retrospect, we tend to say “if I’d tried this,” “if I’d done that,” instead of remembering that we made the best decisions that we could with the information we had at the time. The two of you are the best parents for J, and you’re making the best decisions that you can.
Of course giving him medication is manipulating him. That’s your job. Discipline is also manipulating him, it’s just done without chemical assistance. They’re both invaluable when needed to help J live up to his fullest potential, and to function in a way that works.
I can tell that it’s hard, but it sounds like you’re doing all you can. Give J an extra hug and remind yourself that you’re a great mom to all of your kids.
Remember what I told you – Moms love their kids no matter what and they never give up.
That doesn’t mean they never make mistakes. It means that they do as well as they can. Every parent has their less shining moments, and most of us kids survive.
kids may remember the one time you flew off the handle, but their stability is established by the 100 times you didn’t.
I know how you feel, although to a much lesser extent. My son has trouble gaining weight and I have been advised on several occasions to put him on a medication to stimulate his appetite. However there are side effects and one of them is that it makes him sleepy. Well he is already speech delayed and I don’t want him to be even more developmentally delayed than he already is, and giving a kid a medicine that makes him sleep more would NOT help that problem. BUT he needs to gain weight to be strong enough to not be sick all the time. It is a hard balance. You want to make the best decisions for your kid, but also not necessarily give them something that they don’t absolutely need or that could have possible long term side effects. I agree with you, why couldn’t they put this stuff in the manual? It is so hard to act as your child’s decision maker and have the burden of knowing that you might not always make the right decision. It is a big burden to carry. As usual, thank you for your honesty. It helps those of us going through similar decisions help to make the right one for us and our child.
Thank you for writing this post. I am ignorant on why people choose to medicate their children. I tend to think medication for ADD etc is not a good thing but that is just my gut reaction. Reading this post and hearing your reasons and your struggle with just wanting to do the right thing for J is helping me to understand. I am sorry you have to do all this but you are doing the best you can and with the best reason, because you love him. He is one fortunate little boy!
This post is EXACTLY why you are a good parent. You want the best for J.–striving at every single moment to do that.
You worry that you’re not patient enough, not praising him enough, not giving him what he needs. In reality, he’s so wonderful BECAUSE you and S. have done the work of good parents.
The fact that you are willing to go through and play with the doses and all the different meds with him shows you care and will do right by him. If you didn’t care you would just have him doped up on them and not care that he is sad, as long as he was quiet… I remember my mother going through the ritalin dosing with my baby sister. Mom, her teacher and the doctor were all involved with trying to get the right dose. Poor sibling felt sick a lot due to the side effects of the ritalin, I am glad there are more options now.
I think the behavioral counseling aspect is a great thing, my sister didn’t really have that and I think it would have benefited her more than the meds. Medicate so they can keep up with their peers and work on getting them to the point where they can be less dependent on the medication, I wish they had that strategy with Sibling (this was over 10 years ago, she is 22 now).
While there are a lot of ups and downs during this journey I think the fact that you love him and you try so hard to do what is best for him is what matters and what he is going to remember. I don’t think he could possibly have a better mother for him than you!