14 yr. old daughter w/GBS , and wanting to give up on PT!!Help!!
AnonymousFebruary 8, 2007 at 7:14 pm
My 14 yr. old daughter was diagnosed with GBS in Aug. 2006. Things are just taking it sweet time improving. She is able to walk but with the help of a cane that she refuses to use at school because she is so afraid that other children are going to make fun of her. I have to dismiss her from school atleast twice a week due to the pain in her legs and fatigue. She does go to PT twice per week which she hates doing she gives me a hard time every time she has an appointment. I just dont know what to do. They tell her to do her stretching at home and the exercises but i’m having a hard time forcing it upon it. She always says to me “it doesnt matter because she is going to be in pain for the rest of her life”, and i tell her you will get better when you make an effort with the PT and home PT. I’m so afraid that she is giving up on a battle that i know she can win. If any of you have any advice PLEASE let me know because i refuse to give up on this battle.
AnonymousFebruary 9, 2007 at 10:06 am
[QUOTE=Marla]i tell her you will get better when you make an effort with the PT and home PT[/QUOTE]
One of the things my doctors, PTs and OTs have said to me is that they love Guillain-Barre patients because “you get better regardless of what [they] do.” Don’t be too concerned if your daughter wants to skip a session or two: it won’t change the outcome — she will get better. Same story with the cane. If she can walk without it, why not? She knows what her own body is telling her.
At a time when teens are just starting to take control of their lives, something comes along that wrestles control of her body away from her. That’s a tough age to deal with a child under the best of circumstances. You should probably take it easy yourself. 🙂
Your daughter might like this article that was posted in another thread, about a 17-year-old with GBS:
AnonymousFebruary 14, 2007 at 5:01 pm
I’m sorry to hear about you daughter! I think that patients is the key word, it takes time to get better and even takes more time to get use to your new limitations. I became ill with GBS about a month after I graduated College and it seemed liked my whole world came apart. I was 24, tens years older then your daughter and I had a hard time accepting the fact that I needed a cane and I gave it up as soon as I could. At times I could probably still use one but I feel better being able to walk with out one, it makes me feel like my old self. I don’t think your daughter is giving up, I just think she is overwhelmed by her new limitations. Just be patient with her, give her some space and listen to her. I know for me I just wanted to keep going even though my body would not allow me and that sounds like what she is doing. Hope I make sense and wish you both the best!! 🙂
AnonymousFebruary 22, 2007 at 12:02 am
Sorry to hear about your daughter’s frustration! We have all been there too. The neuro at Mayo put it in perspective for me when she said that a few months is a VERY SHORT time in neurological conditions. It does not seem short for us when we are struggling to regain what we have lost, but it will get better! It helps me to remember I am regaining my strength even though I am clumsy and have stiff cold legs some days. 😀 Tell her to hang in there…better days ahead!
Wishing you both well…
AnonymousMarch 19, 2009 at 4:17 pm
im 17 years old with GBS diagnosed in October of 2008, i went thru a long period of my journey where i wanted to give up on PT also. my GBS went from my tips of my feet all the way to the top of my head, i couldnt move anything, i was on a ventilator and everything so when i finally started PT it was critical for my recovery. But only 2months later i am walking with AFO’s for long distances and without them around the house with little to no assistance. just tell her to keep it up that this is a journey taken by baby steps, my parents struggled everyday to get me to put a full effort in therapy because i thought i was alone in this, but when i realized i wasnt, i kicked it into over-drive and i have come so far..all my wishes
AnonymousMarch 8, 2010 at 9:55 am
My daughter is 16 and it was like pulling out teeth to get her to go to PT, I finally let her win, we stopped PT a few months ago, less stress for both of us. She attends school and she too has resisted any type of aid (walker or wheelchair) I have to say she is much happier and I make sure she does other things (not that she realizes it) walking up and down the stairs at school, I paid her $5.00 a bag to fill up pine cones this weekend. Its the small things to keep her active. My daughter could not see the end of the road, because there is nothing concrete to hold onto. She broke both ankles 2 years ago (gymnastics) and we had a plan, milestones she could look forward to. For her this is where the disconnect was. No miles stones to measure the healing. The fear of the unknown. The hurt of the loss. I hired a Phsychologist (wonderful woman). and I have to say this has helped her more than the PT in getting her mind around this. Leslie (thats her name) says it is like treating someone who has expereinced a great loss and that my daughter is going through that same process. It was amazing to hear all the fear she had behind all the physical goings on. I wish her the best and hope that you have success. Chin up, you are not alone!!
AnonymousJune 14, 2010 at 11:45 pm
i know how frusturating it can be at times to have to keep going to PT cause your not getting the results always fast enough and sometimes it just is annoying to do, i’m 16 and recovering with GBS, i know how it feels. But PT is the way to get back to normal the fastest. The exercise really helps your body heal so much faster with GBS. Stay strong and keep positive!
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