Quality of Life

Five months ago we went to see Charlie’s physiatrist–for those who don’t know, a physiatrist attends to sports injuries and also to issues related to neuro muscular disorders like cerebral palsy. He assess joints and range of motion, and prescribes goodies like braces and wheelchairs when needed. He’s also the guy who could do a Botox injection into tight muscles if we needed it.

On our last visit, he discovered that Charlie’s hamstrings have become even tighter than they were previously. He recommended Baclofen which is an oral muscle relaxer. I’m not interested in giving Baclofen to Charlie. First, it’s a drug and I’m trying to keep the number of drugs we take down to a minimum. Second, it’s a whole-body muscle relaxer and most of Charlie’s body is floppy.

I have a whole bunch of other reasons, but I didn’t really want to talk about that today. I wanted to talk about a little unspoken component that really sealed the deal for me. Something that I think isn’t addressed enough.

As the doctor was describing Baclofen, he mentioned that it’s administered three times a day. THREE TIMES! That’s a lot. Even on my best days, I’m pretty scatterbrained and my husband often has to remind me to take any medicine I’ve been prescribed. Remembering to give Charlie a lunch-time dose of something is extremely difficult for me. I’m not saying I can’t do it–Charlie had a heart medicine that he took for the first year of his life that had to be administered every day at 2:30. I did it, but it was hard. I’d often forget, I’d beat myself up for forgetting, and then I’d have to figure out a good time to give the next dose.

For me, it became a quality of life issue. And that’s something that I think a lot of us forget sometimes. We are so eager to do things for our children that sometimes we follow every piece of advice we’re given without thinking about the big picture. I’m not saying that I would never give Charlie Baclofen, but right now the pros don’t out-weigh the cons. There’s no risk to his hips, and the drug would not help him to walk. Many, many children benefit from this drug, but I don’t think he would be one of them. In the grand scheme of things, it becomes one more thing on an already too-long to do list; it’s yet another consideration when leaving the house; it’s a worry in a mind that it full-up with worries.

I’m trying to remember this as I make plans these days. Trying to schedule in fun as well as therapy. Respecting rest as well as business. I believe that in the end, my family will be grateful that sometimes we said no to one more appointment, took a long nap, or sang a silly song.
Pictures taken at a recent trip to the zoo.
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Comments

  1. therextras says:

    That last photo makes my heart flutter!

    Barbara

  2. I love that last photo too…it's beautiful!

    I'm totally with you on the issue of medication. I only give what I feel is absolutely necessary, which may sound crazy since there's no MD after my name, but sometimes, I feel like I know what's best for my own child. Good for you for making a stand for Charlie.

  3. Katy, From our experience with oral Baclofen, the results from it usually are obtained through intracath. Baclofen pumps for kids with SEVERE spasticity. We know a few who have had these implanted. That is a really nasty road to go down. Faith has been on it orally since about 2005 and we have seen NO improvement in her spasticity. Just the throwing up thing, that I mentioned in your food post last week.

  4. Mamá Terapeuta says:

    Way to go, Katy!!! I right there with you on that matter (well, I'm more extreme hehe).

    GIve ABR some months, the arms will get better. I know several kids that were on baclofen and after ABR phisiatrist them selves said NO MORE for this child.

    Persist! :)

  5. I think I'd make the same call about the Baclofen.

    I remember back when Graham was in every kind of therapy several times a week, and they'd all give us "homework" exercises and things to do while at home. I added up everything they wanted us to do and there literally weren't enough hours in the day. So I threw my hands up and declared home a therapy free zone. Play only. I tried to incorporate therapy into our play, but it wasn't our goal… play was the goal.

  6. You are a wise woman. Excellent post and as always, LOVE the pics.

  7. Baylee and Blair's page says:

    Love the pics! SO CUTE!

    We have to give Baylee her Sildenafil every 6 hours… even through the night. So, we have her on the 9 and 3 hours! Sucks, but ya gotta do it.

    Leaf changing here is GORGEOUS! We will probably be in our peak in the next couple of weeks! If you think Little Rock is pretty you should come to Fayetteville and drive through the mountains! AMAZING!

    Hugs – Tiffany

  8. I love his big smile in the second picture! :)

  9. yeah! Charlie got to ride the Carousel, too! :)

  10. I think Doctors like to give all the options, because there are so many parents that just want to give a drug and forget about the rest.

    We don't do Baclofen either. We do lots of stretches to keep his hamstrings long, and his new therapy we've been doing has improved his hips :)

    Range of motion exercises beat drugs anyday! In our book anyway!

  11. Nathan Charlan says:

    Don't do it. Baclofen is something our Dr.s have talked about a number of times but every time I have said no I just don't things are at that point. Zach gets botox and phenol injections and has WONDERFUL results from them. We will use that method until it no longer works, if and when that happens we will discuss meds if "needed"
    I totally agree with you why would we want our little guys to have and even harder time building their strength. Yes it may help them with their tone but it really does make building strength so much harder.
    I think you made a great choice and you know what is best for Charlie for right now so stick with it.

    Renee

  12. I am awful at remembering Jude's prevacid at night but I always get the depakote. I am also not a fan of medication. I limit myself from meds, and would prefer pain than pain killers because it's just more chemicals. It makes me sad Jude has to be on medication, and doesn't know life without being medicated, so I don't want to add more. In other words I totally agree with you. I love Charlies on the horse, so cute!!!!

  13. therextras says:

    Reinforcing Amy Genn's comment that physician's (sometimes and should) offer all options. However, for some parents, choosing treatment options is harder than for this thoughtful crowd.

    It is interesting among the comments here that pharma-medicine takes such a bashing while the manual therapies that take more time get more supportive comments. Really. It's what you believe is best for your child.

    Quality of life is enhanced by feeling like you are making the choices that matter. Having the freedom to choose.

    On the other side of the coin are parents who believe a medicine might make huge difference in their child's life (think Infantile Spasms) and they have to fight to obtain the meds or to get them without mortgaging their lives.

  14. Nadine Hightower says:

    Do we need to talk about those socks???

    Seriously.

  15. Barbara–I completely agree that medicine might enhance quality of life for many. I didn't want to make it sound differently. I'm sure for many parents, taking a lunch-time med would be no big deal. I really just meant this as an example of a decision.

    Nadine–I love those socks. In fact, I was thinking that when I get off of quarantine I need to go back to Baby Gap and get some more striped socks. Besides, doing laundry is a million times eaiser with socks like that.

  16. We have recently declined feeding therapy and also Periactin. The feeding therapy sounds like torture and I feel like my kid has enough to endure without adding to the load. We tried the Periactin but it made her crazy. The doctor told us to stick with it, but we didn't. I refuse to give my child meds that make her bang her head into the wall, bite herself, etc. I guess sometimes I am "non-compliant" but I am the parent here and I think sometimes the doctors lose sight of that. These are still kids who deserve to be kids- they are not machines that always need fixing.

  17. luckeyfrog says:

    One trick I've found is setting my cell phone alarm for when I need to take medicine. It's simple, but it's just the reminder I need. One of my friends is a school nurse and he actually has an alarm on his watch specifically for when he needs to give a girl his diabetes medicine every morning. (It goes off even on the weekends, which is how I found out about it!)

    I think it's perfectly reasonable to consider treatment options in this way. I think I would want to talk to parents who had tried it, both with positive and negative results. I'd want to know the specific changes they saw, and of course how the child's condition compared to my own. I'm glad you're involved enough to make your own judgment, though, and while lifestyle choices need to be a factor- I'm glad that 'not taking a med at lunch' isn't your ONLY reason.

    Also, pictures are adorable. You really lucked out getting a kid that darn CUTE. 😉

  18. Luckeyfrog–yes, I did plenty of research before making the decision and also several of Charlie's therapists felt it would be detrimental to his progress.

  19. Ben and Bennie says:

    Hey Katy! It is good to meet you as well. Plus it looks like we have a bunch in common. I look forward to keeping up with your blog!

  20. Kelli TenHaken says:

    Thanks for the comment on my blog. I was reading about ABR for your Charlie and it looks like it has really helped him! I am really interested in knowing more about ABR; it sounds like it would help out our daughter Ruby. How did you guys get started?

    I would love to hear more from you about this…email me if you have the time.
    Kelli
    kelli10haken@yahoo.com

    Thanks!

  21. Elizabeth says:

    I'm new to your blog and look forward to catching up. This was an important post, and I'm impressed that you are already thinking in terms of quality of life — so often, parents of children with special needs take forever to get to this sort of wisdom — it becomes sort of trial and error. It was for me in many respects, so I really admire you for jumping the trial, missing the error and using your instincts!

  22. Small Town Girl says:

    I LOVE the carousel picture! :) Very fun!

  23. We've been discussing a bit of Baclofen in our house too. Apparently it takes so much oral Baclofen of be effective that the side effects really kick in. With a pump, it take 1/100 of the amount to accomplish the same thing. You probably already know that, but I thought it was interesting.

    Anyway, our problem is with Nate's sleeping. He wakes up so much at night and takes such restless naps, they think it may be caused by spastic episodes. We'd give him a small dose just at night to help relax him. Problem is, while Nate has high tone everywhere else, in his face he has low tone and so he drools like CRAZY. Baclofen would obviously make it worse. Drooling is fairly cosmetic, I suppose but I've actually considered the drug because I haven't had a good night sleep since Nate was born. Is that selfish of me or what? I dread when the new baby comes getting up to feed every two hours and every hour in between to help Nate. We aren't going to do it (Husband is totally opposed) but if sleeping doesn't improve in the next couple years, I'm going to reevaluate. It's amazing what the thought of a little sleep makes you consider.

  24. yeah, I think mommy knows best on this one…and probably most other things too. Those pictures are precious–especially that last one. How did Charlie like the carousel?

  25. Hey Katy!! You baby is looking great! I have been doing catch up seeing that I haven't been around any at all lately. Been busy LOL

    I couldn't agree more with your drug decision I would definitely have the same issues about forgetting… I hate medicines as well. And you have the right attitude about the scheduling the fun time. I found my self doing that with my son when it came to the many therapies that he was supposed to take.

    sigh! being a parent is rough and adding a disability to the mix really makes you have to view things differently… I refer to your blog on public schools and having your son needs being met!

    As usual it is good to see you are as optimitic and enthusiatic as ever and Charlie is the best… but of course you know that :)
    Wahzat