Hi Sue & Emma
I can't believe she is 18. I remember not so long ago talking about running people off the sidewalk if they are on the wrong side of us... LOL...
I have trouble getting PT but I discovered the doctor cannot write the words Erb's Palsy. We have to be more specific... like injured shoulder -- elbow- muscle pain etc.. tight shoulder... It is very dumb but that is a battle she will be fighting from now on.
I was told by my insurance company's PT people that I was cured of Erb's Palsy... I can't tell you my response to that statement in this small space ... I gave him and earful on OBPI and asked why I could not supinate if I am cured?
Nice to see you again
Kath ( Kathleen M)
Pain - growing pains or more sinister?
-
Kath
- Posts: 3242
- Joined: Mon Nov 18, 2002 4:11 pm
- Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
- Location: New York
Re: Pain - growing pains or more sinister?
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
Re: Pain - growing pains or more sinister?
Hello, Kathy. Welcome to the board. You're further in the BP journey than us (my daughter, Nicole, is 6 y.o.). Except for post-op pain, she hasn't had a lot of pain up to this point. Usually when she gets a pain, I massage her arm for a couple minutes and it feels better. I would like to suggest though that you might consider getting a second opinion. I don't know why a dr. would completely release your son as a patient if he wasn't completely cured. Maybe he won't get any additional gains, but my understanding is that children with BPIs will need to continue therapy to some extent throughout their lives. Sure, they're not going to go to PT weekly forever, there will be breaks, but then they will need to start again now and then. I also think that they'll need some form of stretching (at home at least) on a very regular basis. I think that if our children don't have some form of therapy, they're likely to regress at different points in their lives. We haven't really "stopped" therapy yet, so I don't speak from personal experience though -- just the experiences that I've learned from others we've met. Please don't blame yourself for not continuing therapy. You took the advise that you got from a doctor. Unfortunately, many (prob. most) of us here have been given bad info. from drs. (even from BP specialists sometimes). Hopefully, if you get into a therapy program at least for a while, your son's pain will decrease.
BTW, how's the temp. in his room? If it's too cold (A.C. on in room), then maybe his BP arm is getting cold at night. We used to put an adult sized sock on our daughter's BP arm at night to keep it warm. It his room is too hot, then maybe that's making his BP arm uncomfortable. The circulation is often not as good in the BP arm, so I was just thinking that there might be some temp. sensitivity going on perhaps. Just a thought.
Anyway, I see you got some good suggestions here already. Hopefully things will improve very soon.
~Tina, Mom to Nicole (6 y.o. w/LBPI) & Joshua (1 y.o. c-section)
BTW, how's the temp. in his room? If it's too cold (A.C. on in room), then maybe his BP arm is getting cold at night. We used to put an adult sized sock on our daughter's BP arm at night to keep it warm. It his room is too hot, then maybe that's making his BP arm uncomfortable. The circulation is often not as good in the BP arm, so I was just thinking that there might be some temp. sensitivity going on perhaps. Just a thought.
Anyway, I see you got some good suggestions here already. Hopefully things will improve very soon.
~Tina, Mom to Nicole (6 y.o. w/LBPI) & Joshua (1 y.o. c-section)
Re: Pain - growing pains or more sinister?
Morning all 
)
Thanks for all of your replies.
I just want to make it clear the Professor Kay is the UK's leading specialist on Erb's Palsy and hand surgery. I'm sorry if I confused you all. He's had absolutely the best team available for his care.
When we saw one of his registrars 2 years ago, he said he didn't need to see him again, but he can't have been written off as I previously thought because we didn't need a new referral for an appointment. Here in the UK, if you need to see a specialist, you usually get "referred" by your GP and wait for months. If you get taken off the specialist's books, you generally have to go through that referral and wait again should you ever need to see them again.
I've done Chris' physio since he was 4 - I could do it myself, so he doesn't have professional physio/therapy (if you don't need it, they don't give it - the joys of the NHS). Besides, the physio that took care of him before then gave us bad advice, resulting in the 2nd sub-scap release.
I find it very hard to trust any doctor or therapist that isn't a part of Professor Kay's team with Chris' care. I can't believe or grasp that this injury is as common as cerebral palsy yet I still have to explain about it to medical professionals (other than the specialist team of course). If I know more than them about it, I'm not letting them mess with my kid *lol*.
It's just so very different over here compared to the US. I know the fact that we get free medical treatment means some will think we shouldn't complain but there is always a price to pay and there is so much more available to those in the US (If you have the money of course). Someone yesterday told me that maybe if the NHS staff got paid more, Chris wouldn't have an Erb's Palsy. It got me really angry - there's no excuse for this.
Anyway, I'm wandering off topic. Thank you all so much for your advice - I'll start again with his stretches and try a bit of heat before bed to help (hot bath, heatpack, etc).
Thanks again
Kathy
xx
)Thanks for all of your replies.
I just want to make it clear the Professor Kay is the UK's leading specialist on Erb's Palsy and hand surgery. I'm sorry if I confused you all. He's had absolutely the best team available for his care.
When we saw one of his registrars 2 years ago, he said he didn't need to see him again, but he can't have been written off as I previously thought because we didn't need a new referral for an appointment. Here in the UK, if you need to see a specialist, you usually get "referred" by your GP and wait for months. If you get taken off the specialist's books, you generally have to go through that referral and wait again should you ever need to see them again.
I've done Chris' physio since he was 4 - I could do it myself, so he doesn't have professional physio/therapy (if you don't need it, they don't give it - the joys of the NHS). Besides, the physio that took care of him before then gave us bad advice, resulting in the 2nd sub-scap release.
I find it very hard to trust any doctor or therapist that isn't a part of Professor Kay's team with Chris' care. I can't believe or grasp that this injury is as common as cerebral palsy yet I still have to explain about it to medical professionals (other than the specialist team of course). If I know more than them about it, I'm not letting them mess with my kid *lol*.
It's just so very different over here compared to the US. I know the fact that we get free medical treatment means some will think we shouldn't complain but there is always a price to pay and there is so much more available to those in the US (If you have the money of course). Someone yesterday told me that maybe if the NHS staff got paid more, Chris wouldn't have an Erb's Palsy. It got me really angry - there's no excuse for this.
Anyway, I'm wandering off topic. Thank you all so much for your advice - I'll start again with his stretches and try a bit of heat before bed to help (hot bath, heatpack, etc).
Thanks again
Kathy
xx
-
admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Re: Pain - growing pains or more sinister?
We too found that we were sort of home free from age 6 to 11 years - then he started getting more pain and losing strength and range and ability. His pain has decreased as we started to do specific treatment for his arm and shoulder again. Just being active in sports wasn't enough anymore. We have gained alot of range and strength and lost alot of pain since we started following Dr.Pape's advice and using stretches, exercises, splints and braces and tes.
Richard says his pain was worse for about six months when we first started treating again but now it feels better than it has in years and he can do more - ranges and strength improved. I think things can take a bit of a turn for the worse during those teen years - but it is also a good age when they can cooperate and get involved in making their bodies stronger and healthier and all the growth hormones help with getting the muscles to strengthen up fast.
Richard says his pain was worse for about six months when we first started treating again but now it feels better than it has in years and he can do more - ranges and strength improved. I think things can take a bit of a turn for the worse during those teen years - but it is also a good age when they can cooperate and get involved in making their bodies stronger and healthier and all the growth hormones help with getting the muscles to strengthen up fast.
Re: Pain - growing pains or more sinister?
Hi, Kathy. I have heard of Prof. Kay and have heard very good things about him. I hope by my suggestion to get a 2nd opinion, you didn't think I was implying that he wasn't good. I just thought that it sounded like you weren't completely satisfied with his care at this point. To be honest with you, we've seen Dr. Nath, who is one of the few leading specialists here in the U.S. and I've still gone to other well known specialists for their opinions as well. I guess the way I feel is that no matter how good someone is, they're not perfect and their philosophies might not necessarily coincide with what we want at a given point in time. I'm glad that you'll be seeing Prof. Kay again soon though. I like your philosophy -- "If I know more than them about it, I'm not letting them mess with my kid." Well said!!
I have heard from my BP friends on "your side of the pond" that the physio is done differently there and that it's mostly done at home. I guess I'd just read your post to indicate that you'd taken a break from therapy (meaning "home therapy" too). Will you get to see a therapist as part of your appt. with Prof. Kay? It might be good to have a visit even once a year just as a refresher and for anything that they might see that you could miss. Another Mom here mentioned previously that she goes to therapy I think like once a year and videotapes the entire session so that she'll remember exactly what to do at home (something to that effect). If you have a camcorder and they'll let you do that, it might be beneficial as well.
Anyway, by your reply, I think I might have offended you in my prior post and I hope I didn't. I hope your appt. goes well and that Chris is feeling better soon. I don't look forward to the possible future pain for Nicole. Take care. :O)
~Tina, bpmom@comcast.net
P.S. FYI, If you're interested in communicating with other BPI patients of Prof. Kay's, you'll find some adults with BPIs on the Trauma BPI and OBPI boards on this site.
I have heard from my BP friends on "your side of the pond" that the physio is done differently there and that it's mostly done at home. I guess I'd just read your post to indicate that you'd taken a break from therapy (meaning "home therapy" too). Will you get to see a therapist as part of your appt. with Prof. Kay? It might be good to have a visit even once a year just as a refresher and for anything that they might see that you could miss. Another Mom here mentioned previously that she goes to therapy I think like once a year and videotapes the entire session so that she'll remember exactly what to do at home (something to that effect). If you have a camcorder and they'll let you do that, it might be beneficial as well.
Anyway, by your reply, I think I might have offended you in my prior post and I hope I didn't. I hope your appt. goes well and that Chris is feeling better soon. I don't look forward to the possible future pain for Nicole. Take care. :O)
~Tina, bpmom@comcast.net
P.S. FYI, If you're interested in communicating with other BPI patients of Prof. Kay's, you'll find some adults with BPIs on the Trauma BPI and OBPI boards on this site.