Ok guys we have hit a wall (at least I think so) with wrist extension. She usually keeps it in a neutral position but when she grasps things she draws it in. We have been taping and it seems to help a little but not sure if it is making the flexors stronger because of the resistance. Her OT says she is still too young for E-stim.
And on another note:
Her OT says that her biceps are overcoming her triceps so she is not extending at the elbow. Not sure what implications this has???
She has been completely hysterical in therapy for the last 2 weeks. I thought we were past this because she wasn't giving me a problem for a few months now. But now that she can scoot around the house she has been protesting at therapy if they don't let her do exactly what she wants. How did you guys handle this?? I am getting so burnt out with therapy, and I feel (at least right now) we are getting nowhere. Did any of you guys take a break from it?
Thanks,
Ashley, Kayla's tired Mom, 10.5 mos. ROBPI
Therapy Questions
Re: Therapy Questions
Ashley:
You're not going to like this answer... but no, we didn't take breaks at this age. Two years down the road, we took a break.
You need a new or more interesting therapist. Therapy at 10 months is game playing. What kid doesn't want to play? And with someone playing one on one??? Every kid wants that. So, what is the therapist doing or not doing. Therapy with kids should be all fun and games. It should be smiles and "you're the best!!" all the time. Everytime. She is protesting not the therapy, as much as what constitutes therapy. Juliana looked forward to therapy, she loved her good therapists and was a miserable brat with the ones she disliked. She is stubborn and headstrong...but she never showed that to the most successful of her therapists. And, if a therapist complained that she wouldn't work, I knew it was the therapists' problem, not hers.
As to your other questions: if the biceps are overpowering the triceps then you have a recipe for contracture. Our arms hang straight because our biceps and triceps balance each other out. In bpi kids, the injury usually renders an unbalanced arm. And if the biceps come in before the triceps, then you will have a biceps that contracts, without the corresponding triceps to pull back on the arm (to straighten it). You need to play games that encourage the use of the triceps, and to strengthen them. Plus,you need to passively stretch the elbow.
The bending of the wrist is a reaction to not having complete use of the biceps. If the biceps are coming in, and you encourage the proper use of them, this tipping should go away. Juliana does this, because she has poor biceps function. She also has weak hand function, so if she wants to hold a cup in one hand and a cookie in the other, the cup is cradled in her tipped hand. She can't wrap her fingers around the cup and hold it for any extended period of time. (okay, and she has trouble getting the cookie to the mouth too....)
I know you are tired. I remember being that tired. I remember slamming the car door and choking back tears as we went for yet another therapy session. I was mentally spent. But I just forged ahead. Having a great therapist really helped me. she gave me so many ideas of things to do with Juliana that I felt more useful. And since she made it fun for Juliana, she enjoyed it when the therapist came or when we went to the facility.
I know that it can be difficult to find therapists, but don't be afraid to try someone who isn't strictly "pediatric". Or someone new to the profession. These people might be more willing to play and learn, than someone who thinks they know it all.
good luck,
claudia
Message was edited by: claudia
You're not going to like this answer... but no, we didn't take breaks at this age. Two years down the road, we took a break.
You need a new or more interesting therapist. Therapy at 10 months is game playing. What kid doesn't want to play? And with someone playing one on one??? Every kid wants that. So, what is the therapist doing or not doing. Therapy with kids should be all fun and games. It should be smiles and "you're the best!!" all the time. Everytime. She is protesting not the therapy, as much as what constitutes therapy. Juliana looked forward to therapy, she loved her good therapists and was a miserable brat with the ones she disliked. She is stubborn and headstrong...but she never showed that to the most successful of her therapists. And, if a therapist complained that she wouldn't work, I knew it was the therapists' problem, not hers.
As to your other questions: if the biceps are overpowering the triceps then you have a recipe for contracture. Our arms hang straight because our biceps and triceps balance each other out. In bpi kids, the injury usually renders an unbalanced arm. And if the biceps come in before the triceps, then you will have a biceps that contracts, without the corresponding triceps to pull back on the arm (to straighten it). You need to play games that encourage the use of the triceps, and to strengthen them. Plus,you need to passively stretch the elbow.
The bending of the wrist is a reaction to not having complete use of the biceps. If the biceps are coming in, and you encourage the proper use of them, this tipping should go away. Juliana does this, because she has poor biceps function. She also has weak hand function, so if she wants to hold a cup in one hand and a cookie in the other, the cup is cradled in her tipped hand. She can't wrap her fingers around the cup and hold it for any extended period of time. (okay, and she has trouble getting the cookie to the mouth too....)
I know you are tired. I remember being that tired. I remember slamming the car door and choking back tears as we went for yet another therapy session. I was mentally spent. But I just forged ahead. Having a great therapist really helped me. she gave me so many ideas of things to do with Juliana that I felt more useful. And since she made it fun for Juliana, she enjoyed it when the therapist came or when we went to the facility.
I know that it can be difficult to find therapists, but don't be afraid to try someone who isn't strictly "pediatric". Or someone new to the profession. These people might be more willing to play and learn, than someone who thinks they know it all.
good luck,
claudia
Message was edited by: claudia
Re: Therapy Questions
That's great information Claudia. I would like to add that when my son was little we were using free OT services through our local Education Service District. And, the best part about that was that they came to my home or office to do the therapy. ( I brought Zack to work w/ me until he was a year old). If you haven't checked into that option yet, it might work out so Kayla could be at home and more relaxed. Not to mention less stress for you. The therapist always came with fun toys, that Zack only got to play with when he was there. And, both of Zack's OTs had ZERO experience w/ BPI injuries. It was a group effort, and they were open to learning more about the injury and trying new things. I live in a very small town, so it wasn't like I had too many options for OTs -- but, it worked out. I know how exhausting this whole process is... and, it can't be any fun if Kayla is crying at her therapy appts. I'm so sorry. Maybe a change in therapists or locations would help. I will say that Kayla sounds like she has a strong-will about her...a perfect attribute for a BPI kid. Best wishes to you. ~april, mom to Zack, 5.
Re: Therapy Questions
Oh boy do I remember those days of just wanting to quit it all. We went to therapy from 10 weeks old till 7 yrs old 4 days a week and we started doing estim at 4 months old that was done at home everyday and yes he used to throw a fit. I gotta tell you even having a very creative therapist there were times that we just had to quit early because he was crying so hard. Frankie also started at about 10 months not wanting to play with his therapist I used to bribe him with 99 cent hot wheels, what a collection he had. At 14 yrs old now he see his therapist 1x a month but has to do stretches and exercises everyday and he still cops an attitude the only difference is now theres no bribing him its just something he has to do like it or not. Yes sometimes I still want to quit, cry and run away from it all but I made it this far and so you will. Hang in there Mare
Re: Therapy Questions
We took a break from therapy quite a few times. I think it all depends on the kid and the injury.
Please just take the advice that we all give and use it to make your OWN decisions. You know your kid and what she can handle and what her limitations are.
Please just take the advice that we all give and use it to make your OWN decisions. You know your kid and what she can handle and what her limitations are.
Re: Therapy Questions
We also took a break for a while. I agree with Mandie though that this depends on your daughter and her degree of injury.
I don't know how often you're going but we also went from every week to every other week. So at least you get a little break w/o stopping therepy altogether.
I think that she's at the age where they want to do what they want! They don't like to be told what to do at that age and certainly don't like being forced to do something that's uncomfortable for them. Our therapy has gotten a lot better since Jacob's a little older!
Our OT is wonderful though and she just goes with the flow and his attention span. She kinda lets him decide when it's time to quit an activity and move on to something else. They get bored easily at that age, so lots of variety is important.
I don't know how often you're going but we also went from every week to every other week. So at least you get a little break w/o stopping therepy altogether.
I think that she's at the age where they want to do what they want! They don't like to be told what to do at that age and certainly don't like being forced to do something that's uncomfortable for them. Our therapy has gotten a lot better since Jacob's a little older!
Our OT is wonderful though and she just goes with the flow and his attention span. She kinda lets him decide when it's time to quit an activity and move on to something else. They get bored easily at that age, so lots of variety is important.
Re: Therapy Questions
Well we went back today and she is getting worse about protesting. As soon as I set her on the mat she started wailing. Her OT and I decided that it might be better for me to not be with her during therapy so I left her there. The OT said she did ok...she cried but worked at the same time so at least thats a start. I feel horrible about the whole thing....I mean I know how important therapy is (especially since we are going the no surgery route) but at the same time I feel like she is getting nothing out of it because she is crying the whole time. I want to give it my all but it isn't up to me, it's up to Kayla, and she is too young to understand that. I really like her OT and she and Kayla get along well as long as she is not making her use her affected arm. She is very knowledgeable about BPI and is very open to my suggestions and knows that I know her best so she always asks me what to do when she is fussing. Her PT is the one we have normally had the problems with (I won't even get into that). I think, too, that Kayla just realized how to REALLY manipulate because she is acting this way at home too. If she doesn't get her way, it over. I know its a phase and she will continue to push the limits, I hope it doesn't last that long. We are going to do the "No Mom" in therapy for a month and see how it goes. She is so strong willed and hopefully me not being there will help her understand that she HAS to do this. Before I was just making her mad cause I wouldn't save her, now I won't be there to save her....It just breaks my heart....why does it have to be so HARD??
Ashley
Ashley
Re: Therapy Questions
Ashley:
I remember going to a new ot/pt facility for pt and their "policy" was no parents in the rooms. Juliana had always had me around and she was hysterical. So they broke their policy because she wanted me to be there (big surprize in a new place, huh?). Ultimately, they threw me out of the room, and she did fine. But I remember being so pissed off that I couldn't be there.
We switched to a different facility soon after, and they were more relaxed--and it showed! Though they preferred the parents out, they let the kids get acclimated first and then moved us out.
If she is in manipulation mode, you might do better to stay out of the room. I found it doubly difficult not to be in there because I learned games and tricks from the ots and pts and I couldn't learn anything if I wasn't in the room.
good luck,
claudia
I remember going to a new ot/pt facility for pt and their "policy" was no parents in the rooms. Juliana had always had me around and she was hysterical. So they broke their policy because she wanted me to be there (big surprize in a new place, huh?). Ultimately, they threw me out of the room, and she did fine. But I remember being so pissed off that I couldn't be there.
We switched to a different facility soon after, and they were more relaxed--and it showed! Though they preferred the parents out, they let the kids get acclimated first and then moved us out.
If she is in manipulation mode, you might do better to stay out of the room. I found it doubly difficult not to be in there because I learned games and tricks from the ots and pts and I couldn't learn anything if I wasn't in the room.
good luck,
claudia