Those Damn Decisions

You know the expression “you’re dammed if you do; you’re damned if you don’t”? Well, that’s how I’m feeling right now.
Charlie’s therapist is worried about his hamstrings. His physiatrist is worried about his hamstrings. I am not worried about his hamstrings.
This puts me in a bad situation. Everyone is recommending interventions for said hamstrings and I don’t want to do any of them.

Here’s the deal: Charlie cannot keep his leg straight at ninety degrees. For those of you that don’t understand, if Charlie lies on his back and I hold his leg straight, I can’t get it all the way up to ninety degrees. If you stretch him slowly, you can probably get to 85. If you move his leg quickly, it’s a lot less–I’m not sure how much less, he tends to tense up if you try something like that.

When he stands, he starts off very straight and as he tires, he starts to crouch. The PT is convinced that this is because of his tight hamstrings. I think it’s because of his weak everything else.

The pressure is starting to build.

The PT would love to see him in a stander for several hours a day, but we’ve got two second-hand standers, neither of which is easy to use and one of which is probably dangerous, so we don’t really like putting him in the stander. We do a lot of free-standing in an attempt to make up for this. Buying a new stander is pretty much out of the question because they cost thousands of dollars and we don’t have thousands of dollars to spend on medical equipment we’re not sure we even want. I offered to purchase a second-hand stander, but the PT was not at all enthused about that idea.

The Physiatrist wanted to give Charlie the muscle relaxer Baclofen, which I refused. Charlie doesn’t need muscles relaxers–he’s weak enough all ready. He’d end up with decent hamstrings and the rest of his body would resemble spaghetti noodles.

So now the PT is asking about Botox and I’m just not feelin’ it. From what I can understand, no one is worried about Charlie’s hips. No one thinks that his tight hamstrings are affecting his ability to stand/walk. His hamstrings are not rapidly getting worse–they are changing very slowly.

I just don’t see the purpose of it. I’m thinking that maybe somebody should explain that to me? Of all the choices, Botox appeals the most, but it doesn’t really appeal. I feel like I’d be subjecting Charlie to an invasive medical procedure to please his doctor and his therapist. Something’s out of whack there.

I know that everyone who works with Charlie only wants the best for him, but in this case, I’m not so sure that we’re all in agreement. I have days where I just want to turn off the lights and act like nobody’s home because it can be HARD to listen to everyone else’s opinion day in, day out. I’ve been burned by medical professionals before, so I’m not going to just do everything I’m told. But then I feel like I’m guilty of child neglect if I don’t take their recommendations at face value.

It’s one of those decisions.

Pictures taken today at the New Olreans French Market. As kid we always went there to get our pumpkins and now I get to take Charlie!

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  1. Melio (MelissaInk) says:

    Whatever your decision, I hope you have a team of people that will respect it.

    As for child neglect … unless you are the complete opposite of the person you portray on the internet, you are a doting, caring mama. I want to be your kid.

  2. Mamá Terapeuta says:

    have you ask the ABR center? They have a really good answer to all this.

    Maybe they don't explain this during the first lecture over there, but… If you trully believe in ABR and are commited to it, you don't need to do any of this things the PT is telling you about.

    Botox??? Standers??? Please, more damage than benefits!

  3. Nadine Hightower says:

    I don't see how the stander works in "Stretching" or "strengthing" the hamstring. But I'm not there.

    Do they, the team of dr and therapist, get a kick back if you buy new equipment? But used will work just as well.
    I just don't know enough about botox to say anything but I thought it "froze" the wrinkles in your face why doesn't "freeze up" the muscles?

    All Rhetroical questions so you need not answer.

    I have many days I'd love to turn off the lights and act like I'm out.
    But you know you'd feel guilty if you did, I would.

    But never do anything you're not comfortable or feel pressured about with the care and welfare of Charlie.

    Just take each thing one at a time, and you'll get thru it.

    Love the pumpkin photos!!

    And okay, point taken about the socks. I never really thought about washing them. You are so right.

  4. desperate housewife says:

    I'm so sorry. And I know next to nothing about these sorts of decisions, but I do know about fertility decisions and doctors telling you to try things and take things that just don't feel right. All I can say to you, as I keep saying to myself, is "trust your instincts."
    I belive, as I know you do, too, that God gave these kids to US because WE are the best parents for them. You can only mess it up if you start listening to outside influences over your own heart.
    That's my opinion, anyways. Big hugs!

  5. therextras says:

    Validating all your feelings, Katy. These decisions ARE tough.

    Emphasizing that the physicians and therapists are recommending only from their knowledge-base with Charlie's best interest. No kick-backs from equipment nor need to 'please' them.

    I do not understand why a new stander is not covered for Charlie, but no need to explain that to me. My patients in his age range have 2-3 pieces of equipment, commonly.

    As I read the beginning of the post, my thoughts were 'more weight-bearing in standing' – putting me in agreement with your PT.

    I am not quick to suggest Botox but it is one of the effective options in the range of management for spastic muscles.

    I am certain you have explored every ABR resource, knowing you.

    How standing(WB) works is not that different from the specific massage of ABR. Positioning as a therapeutic intervention provides long term stretch to soft tissue.

    A good piece of equipment (stander) just makes it easier and the stretch more targetted. Thing is, with a stander, he could stand a lot at a table for all his learning and video viewing.

    As winter comes along it is a good season to use/try TheraTogs.

    LOVE the photos! (Make me smile and increases my heartrate!)

  6. I had so many moments, when Graham was that age, and I was being told dozens of different things by dozens of doctors and therapists, I just wanted to throw my hands up, fire EVERYBODY with a big "Thanks for everything folks, but I've got it from here. Won't be needing your services anymore!!"

  7. Josephine says:

    If you can get him free standing on a regular basis, why would they want to replace that with a stander? We've tried botox and valium for Avery's adductors. Botox is alright – it is dependent on intesive stretching to work properly, and then it wears off and takes the progress with it. Valium was what our physiatrist recommended over baclofen, primarily because he thought it would be easier to administer. To be honest, this is the thrid time we've attempted valium, and I still am not sure I see it making much of a difference. *sigh* It took us MONTHS to even agree to try it, and I'm honestly trying to give it a proper chance, but I just don't see any improvement, or at least, I'm not convinced that the progress she's made has anything to do with the valium.
    You know what you're talking about though. Ultimately, you need to to what YOU think is best. Mother's intuition is not something which should be ignored. The reason we did agree to try the valium is because we know how tight those muscles are, and how much they're pulling on her hips and joints, and we decided the chance of preventing permanent hip damage outweighed the smaller chance of adverse side effects.

  8. Accessing Life says:

    I must say I agree with your opposition to Baclofin. I took it for a while. One pill knocked me out.

  9. No advice to offer. I just want to say that he's one totally cute punkin'.

  10. Those are some supercute photos.
    Tough situation, I know. Do you have a neuro for Charlie who you like? NOT that you need yet another opinion muddling your brain, but I've often found our neurologist to be surprisingly helpful with this sort of thing.

  11. Hi there..

    A has been getting botox in his legs and they (the doctors) can't say one way or another if it is helping him or not, and he has to have it every three months.

    And as for the hamstrings, hold tough. A ended up having to have his cut, since his range of motion was so bad, and his legs were atrophying at that position. Not something to take lightly at all. It is a surgical procedure and there is a lot of recovery time involved.

    You do what you think is right. It is one thing for doctors and therapists to say what they will, they do their thing and go home, you have to deal with the ramifications of it all.

  12. I love how the "therory" of a "team" is expressed by professionals. But I have never witnessed it! Botox is a good option, really for children who have exausted other options but it is only temporary!~ We are preparing for Faith's gastrocs release with several other tendon releases b/c of her spasticity. But she is no unable to stand b/c she is so tight. There are so many choices to make and it's so hard to know what's right for Charlie. All we can do is ask for guidance from our Higher Power and pray for the best. We have made lots of mistakes over Faith's life.

  13. louralann says:

    My mum had botox done. Her tendons were so tight they were pulling her feet up towards her legs and the PT wasn't helping, so they tried botox. The Botox didn't work. They ended up cutting her Achilles tendon and she now has to wear foot braces since the feet flop.

    I'm not for Botox since in my moms case it was completely worthless.

    But I also think that you as his mum know whats best for him. You're with him on a daily basis and you know his strength and weaknesses. You are your childs advocate and if you think it is not something that will help him then you need to be his voice.

    You're a great mum…don't let anyone tell you otherwise.

  14. Small Town Girl says:

    LOVE the pictures. He looks so incredibly happy!!

  15. Go with your gut. You tend to do well when you go that way. I will pray that you make the best decision for Charlie. We miss the little booger. Love the pictures.

  16. I too am confused as to what the botox will do. I also thought it would freeze muscles and that is why people had it injecting into their faces. I would say, go with your gut. Sounds like everyone here who has experienced it hasn't had much luck.

    Take care.

  17. Josephine says:

    Just wanted to emphasize that botox will only work if you do about a billion stretches a day. That being the case, I wonder how much of the benefit comes from the botox itself – how much is the stretching alone?

  18. I'm no expert and I've got no advice and if it were me I'd have a really tough time deciding…but you seem extremely knowledgeable and capable when it comes to Charlie, so I know you'll get it figured out. good luck!

  19. Hi Katy – After reading this I went home & tried my son's (Miles 2.5 yo) hamstrings. he reaches about 85 degrees too. I know that all kids are different but I wanted to let you know that no one has ever mentioned botox to me. Not his EI PT, weekly PT, the PT that we spent a 3 week intensive with this summer or his Physiatrist.
    And Miles takes baclofen. So he is a floppy boy that still has tight hamstrings.
    Go with your gut.
    & I love your blog

  20. Miss Burb says:

    One of our local EI places takes in a lot of use equipment and allows other people to purchase them at a low price…as long as we agree to return the item when we're finished with it. too bad you're not local, because there are tons of standers you could try out! If you're ever willing to make the trip, we're in KC :)

    It's funny, because I feel we're the opposite; LilB's medical team takes the passive approach. They don't tell me about anything unless I ask them or PUSH them. However, they were the ones to bring up Botox first (after my many inquisitions about certain muscles). I was a bit hesitant but I like it because we can target whatever we want as opposed to Baclofen which would essentially just do everything. I was still nervous when talking to the nurse about it and she said, you know, it's only temporary. If you don't like it, you don't have to do it again. It would suck to put LilB through something that I didn't like the results of but we really aren't making any progress in certain areas (we can stretch his legs 90 degress but therapists advise against it due to hips)
    isn't it *not* funny that insurance won't cover a stander? we have Medicaid and they won't either! I guess they'd rather pay for surgery later…

    good luck. I've heard good things about Baclofen and might even consider it myself one day (two moms I've talked to swear it's helped with speech) but for now, we're trying Botox Nov 30. will update my blog with results

  21. Oh my, I DO love you! I literally went through all this crud with Logan. Even down to feeling all the guilt. Right off the bat, I gotta say FABULOUS decision with oral baclofen. Logan was on the same dosage for over 2.5 years before I worked with his neurologist and had him weened off. Our spasticity doc sings a different tune but that's why I exxed her off his list of specialist. Don't know why I waited so long to take him off. I could write a book of our experience with it and we are not it favor of it in the least.

    Stander… uh, personally Logan had no luck here with those. Zip, zero, nadda. I've recently heard negative input on those, especially from ABM practitioners.

    As for Botox, not a huge fan on injecting poison into my kid. Logan had four injections in each calf muscle. The results were WAY less than flattering. Had I known it was going to be that crappy of an outcome, I'd not have put Logan through the torment and trauma. However, not that you don't already know, but every kid can get different results.

    To this day, Logan is tight and not able to go 90 either. I try not to worry about it cause according to his x-rays… things are fine. For now…

    So far, the best things I've witnessed to help Logan overcome spasticity is ABM. Lots and lots of it.