Archive for January 17th, 2009

Bending, not Breaking

I feel like the last 6-8 weeks have been all about testing me to see how far I’ll bend without breaking. A number of you have commented, emailed, IM’d, facebooked, smoke-signaled, and sent carrier pigeons to make sure I’m doing okay. Clearly the tone of my blog posts has become increasingly desperate and is reflecting my recent state of mind.

The fact of the matter is that I’ve always wondered where my limit was, and I may just have found it. I had an unbelievably crappy December, and I mean that in every sense of the word. I mean, actually, many of my friends had unbelievably crappy Decembers, but it took a truly emotional toll on me. And it affected my schedule, my activities, my workload, my family, my coping ability, everything. And then everyone got sick. And the sickness hasn’t stopped, really. There was the norovirus starting December 21st that went on for 10 days that I already wrote about. Then I got a horrendous cold and gave it to the babies (sorry!). Then the babies had that forEVER, and Ellie got double ear infections subsequent to the cold. Now Abby has 4 molars coming in and Sam has a horrendous rash all over his entire back and his abdomen.

Work has been incredibly stressful, both for me and for my husband (more for him). I’ve got so much going on that I don’t know which way is up. Now I’m having daily back spasms, where I suddenly turn into a twisted pretzel and can’t get out of it.

And to make things more fun, the J-man is now on a medicine strike. And this is really where I am realizing that I’m reaching my limit. Can I bend any more? Will I break? I’m sure I won’t, but really, each day I feel like I get closer.

So about this medicine strike…

The J-man is currently taking two medicines: Focalin and Tenex. We’ve tweaked the dosages and frequency a number of times and we’ve gotten ourselves to a comfortable point where he takes the Tenex twice a day and the Focalin 2-3 times per day, depending on what he needs to do that day (e.g. on days when he has Speech Therapy after school, he gets the third dose of Focalin). We recently decided he could probably benefit from the 3rd dose of Focalin every day, but then he went on this medication strike, so it’s sort of a moot point.

Getting him to take his medication has always been a struggle, as you may remember. That’s why the Daytrana Patch was such a lifesaver. But it had too many downsides for his profile to be the optimal answer. It didn’t work as well for him as the Focalin does. But getting him to take a medicine orally is next to impossible. We have two good weeks, and then two weeks of hell, then two good weeks, then two weeks of pure hell, and so on. We are currently in hell, and I’m not sure it’s only going to last two weeks.

His latest trick is that he won’t open his mouth to take the medicine, but even once he does, he gets the medicine (which was mixed into mango sorbet – don’t ask… he has a discriminating palate) in his mouth and then won’t swallow it. He stands there and cries and refuses to swallow for what seems like forever, but is really somewhere between 5 and 15 minutes, and then either spits it out or forces himself to throw up (no, I’m not exaggerating). Occasionally he’ll swallow it under threat of not getting potato chips in his lunchbox, but that threat doesn’t hold a lot of weight anymore.

The last day or so he’s been willing to take the medicine in Banana Yo Baby Yogurt. But only Banana. And only the Yo Baby kind. Not just any Stony Field Farms Whole Fat Banana Flavoured Yogurt. And don’t go trying to trick him, mind you. He can tell the difference. Problem is, you can’t JUST buy Banana Yo Baby Yogurt – it comes in six packs where 3 are banana and 3 are vanilla… and if he’s taking medicine 3x per day… imagine how much yogurt we’d have to buy to give in to this kind of demand!! SIGH. There MUST be a better way.

It used to be that when he would go on his medicine-taking strikes at home, he would always still take the medicine for his teacher at school, so we always had that as a fallback (at least during the week). But this week, he stopped taking it for his teacher as well. Huge, huge problem!

So Thursday, I called Dr. S., Developmental Pediatrician Extraordinaire. I was desperate. We talked through a lot of possibilities – including changing medications, taking away toys and privileges, having Dr. S. have a heart-to-heart with him (sometimes having an outside authority figure lay down the law helps kids see the light, but I’m skeptical in this case about what kind of an impact this will have), changing the routine, buying more duct tape, switching the times for the Tenex (maybe adding a third dose and moving his last dose to bedtime), etc. We agreed that our previously scheduled parent meeting for Tuesday (Inauguration Day) would be changed to a meeting with him and Julian for starters, and we’d discuss options for going forward from there.

Finally I said that we simply have to come up with something, because I can’t go on like this. If things continue like this I might just have to check myself into the Funny Farm, I said. “Well, that’s another viable option,” he said. “We’ll add that to the list, but maybe we’ll just hold that in reserve for now.” Honestly, I’m thinking the duct tape option might actually have been the best option we came up with for the short term.

Dr. S. told me that J-man is a really tough case when it comes to the medicine compliance – one of the toughest, and that this ISN’T about me. We may have to take several steps back and start from square one to find the right solution. And, we may have to settle for a suboptimal medication for better compliance, if that’s what it takes to get him to take his medicine regularly without routine power struggles – because we simply cannot continue this way. I reminded the doctor that he promised me months ago that J would not break him when it came to medicine-taking. “Oh he isn’t going to break me. But he is BENDING me,” he replied.

You’re telling me, doc. You’re telling me.

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