Freudian Slip

Well, I missed my appointment with the Physiatrist today. They told me two-fifteen and I heard two-fifty. I showed up smiled, and they told me I’d missed my appointment. We go back next week.

I definitely think it was some sort of Freudian thing. I really don’t want to go to this appointment. I’ve put it off for about two months, but the PT keeps asking about it, so I figured I’d better go ahead and schedule it.

You see, I’m facing what I would call a pressure sandwich.

I’ve got the physiatrist who wants to put Charlie on Baclofen. I don’t want to put him on Baclofen, but I’ll still have to listen to the benefits of it. Including some stuff that I think is total crap. Stuff like, “it really only effects the tight muscles.” Right. An oral medication. Sorry, but my barely-passed-Biology brain finds that a little hard to believe. Also, Charlie’s PT and OT feel strongly that Baclofen is not the way to go.

The PT and the OT are lobbying for Botox injections in Charlie’s hamstrings. The doctor, on the other hand, doesn’t think that Charlie’s condition is severe enough to warrant Botox. All of Charlie’s alternative peeps (which includes my MIL and my husband) think that botox is an unwarranted poison that doesn’t need to be anywhere near Charlie.

So you can see the situation I’m in. No one agrees. There’s no consensus. Also, all these people and all these opinions won’t be with me in the doctor’s office. There, I’ll be alone.

Is it any wonder I don’t want to go?

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  1. How frustrating to have different people pushing for different things.

    I wouldn't want to go either.

  2. Oh, I wouldn't want to go either! Sorry I have no advice/experience with this stuff… just wishing you good luck.

  3. All I can say is: the older Charlie gets the easier it will be to say No to the doctors/therapists/etc.

    We listen. Nod politely and do what we want. We'll even fill a prescription they recommend…once in a while.

    I have a bottle of Baclofen sitting in my fridge untouched…and a bottle of Reglan in the cupboard, untouched.


    I told our Nutritionist the other day, "We are always open to ideas and suggestions. We do as much research as we can, but if you think we are missing something please let us know. Push as hard as you want…if we don't like it we'll push back!" All said with a smile, and she said she appreciated knowing that.

    I think sometimes the parents who care enough to really think about what rediculous things are being suggested for their kids get marked "problem parents".

    I'm OK with that….but don't withhold info from me because I've said no before. Duh.

    Good luck!

  4. Baclofen will affect the overall muscle tone – it doesn't differentiate between tight muscles and loose. Some children lose a little bit of truck strength along with leg tightness, but they get it back.
    Botox will target only the muscles it's injected into. I did and would choose it over baclofen/valium, except that our physiatrist now says that the muscles he would have to inject are too difficult to get to with a needle.
    Wouldn't it be nice if all the decisions we had to make for our children were clear-cut, black and white, so that we didn't have to spend so much time wondering whether we've done the right thing??
    Good luck. You're Charlie's mom, you'll make the right choice for him.

  5. Mamá Terapeuta says:

    Do you HAVE to go??

    I think the reason why no one agree is because in traditional therapy nothing is clear, there are as many opinion as person involved. And that to me say there is no THEORY behind, no background other than experience.

  6. I am sorry, Katy. Maybe you should just state your opinion to the dr and see if he can change your opinion. I have had those same conversations and they stink. But in the end it's you and hubby's choice and no one else's. It may mean that you say no to everything now and revisit the different ideas in 6 mo. or a yr. I had alot of prof. recomend different things that we weren't ready for but down the line as she got older we did have to revisit and did end up choosing some of those paths. IE: Faith's recent surgery, we were being pushed for over a yr for it but we just weren't sure or ready. In the end as she got bigger and tighter it ended up being nessessary. I am glad that we waited but I am also glad we did it!

  7. Medications are so frustrating!!!

  8. I really like the quote from Amy in her comment above about what to tell docs, therapists, etc: "We are always open to ideas and suggestions. We do as much research as we can, but if you think we are missing something please let us know. Push as hard as you want…if we don't like it we'll push back!"

    I'm totally using that one (thanks, Amy!).

    I agree with you on the baclofen. At our first appt with a physiatrist at the local children's hospital (whom we no longer see) she suggested I put Fletcher on some drug in the valium family to dampen his tightening up when he gets excited, tries to move, etc (you know how he is, way floppy in the trunk and tight in arms, legs, etc when he is excited, mad, or trying to move). She too tried to tell me that they didn't think it would greatly affect his cognition, alertness or floppiness at other times. Yeah, right. Like I said, don't go back to her.

    We have done botox when he was really tiny, and gave it up to see if ABR would do the same thing (of course we haven't done ABR enough to give it a fair shake) but I wouldn't rule out botox altogether in the future.

    Being informed is always good. So go to the appointment with an open mind and really listen to what the doc has to say. But ask the hard questions and don't let them talk you into anything that doesn't make sense to you. I type this knowing already that it is exactly what you will do.

    Good luck!

  9. Ugh, yes I hear ya! It's a difficult situation, so I thought I'd tell you a bit about our experience. Romy first got botox around the age of 14 months. Mind you, her leg muscles are REALLY tight. Botox did help some, it wasn't a huge change, but it did help and lasted a good 2 months or so. Her second round of botox came at about 18 months and didn't do squat. There was absolutely no change whatsoever.

    Her doctor started pushing baclofen and I too resisted. Romy's trunk, arm and neck muscles are fairly normal so I didn't want to risk having a floppy, sleepy baby let alone putting yet another medication into her little body. After a a few months of debating, I agreed to try it if he put her on the lowest dose possible.

    She takes .5 ml's 3 times a day. For us, it has been so, so, so beneficial. She doesn't get sleepy, she has near normal range of motion now too. Her feet easily plant firmly onto the ground, something that she has never been able to do. It has really been a huge positive change for us.

    The only side effect we have experienced is that she drools a bit, not much, but she never did it before. I do notice that she's a bit loose in her torso, but not enough to make her slump or slouch, she just needs to use her hands more to stay in an upright position.

    But, before I go on a pro-baclofen crusade, I will say that Romy is one of the lucky few that responds to very low doses of baclofen. Her therapists and doctor's have even said that the results she has gotten isn't typical. Also, she has only been on it for about 3 weeks.

    I have never met Charlie, and you are his Mother and know him better than anyone on the planet. I know you will make the best possible choices and I admire that very much. I just wanted to share our story. Good luck!

  10. I'm with you on the Baclofen thing… my doc said it wouldn't be good for LilB because it doesn't target specific areas!

    We did our first Botox on Friday. MrB was hesitant because of the "posion" but so far so good! I think it's really going to help. He's already opening up his hand and moving it by himself. She even decided to take a few of the injections off because he looked so good.

    We've had 3 people recommend Melatonin to us for his sleep issues (which are inconsistant; sometimes he sleeps great and other times barley at all). MrB and I decided not to after our research and decided to try a schedule…

    so your son is a bit younger then ours, but what is his schedule like?

  11. You know what is right for Charley and what isn't. Don't let anyone talk you into anything that you don't feel is right. Alan is on botox for his hamstrings, but we are awaiting the results of the newest studies to see if we have any good results.

  12. Can't blame you at all…at all. I would be wracked with indecision myself over making the call.

    Wish I had something more meaningful for you. I'm a bit wiped myself this week.

  13. I've been there so many times! Recently it as over knee braces. Her doctor wanted a knee brace, her PT wanted her to do exercises. This debate has gone on for two years, every clinic, every six months. I decided against a brace because I was worried about Queen Teen's mental health as well as her knee. The doctor now thinks I'm a negligent mom. Now, we finally are getting the brace and I'm sure the doctor is thinking "I told you so." But I had to give my daughter a chance because I know putting a large knee brace on a young teen age girl is murder on the self esteem. Doctor's forget the big picture.

  14. Are you sure you're not living MY life?


    If the botox were used for something like drooling and protecting his airway I might look at it differently, but I'm thinking you are pretty spot on with your thinking now.

  15. Small Town Girl says:

    I'm so glad I don't have to deal with the pressure you do! When you're making decisions for someone else it's always so much harder, too.

  16. Melio (MelissaInk) says:

    "Pressure sandwich." Nice term.

  17. Go with your gut. Doctor mom knows best.