Since forever I've heard the puberty makes everything run amoc especially for kids with bpi... so we're beginning this process now and for you experienced moms, what kind of advice can you give us moms going into it? (advice about changes in the bpi status and function - not advice about puberty lol lol)
thanks in advance for you help and advice
-francine
Can we talk about puberty & bpi ? experienced mom advice please
Re: Can we talk about puberty & bpi ? experienced mom advice please
I am trying to remember but I really don't think Kayla who is 13 was any different then Elyse who is 15. Besides her liking her alone time but she has always been that way. She is more mooder then Elyse but I am as well. I just stay away from her. Funs times at my house with the 3 of us. (lol)
Now as you know though Kayla has been having lots of problems with the BPI but I am not sure you can say that is from puberty.
Good luck.
Angie
Message was edited by: AngieD
Now as you know though Kayla has been having lots of problems with the BPI but I am not sure you can say that is from puberty.
Good luck.
Angie
Message was edited by: AngieD
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Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: Can we talk about puberty & bpi ? experienced mom advice please
Best advice from MY Experiences....keep her tal;king and Please Listen every time...no matter how small her "drama for the Day"....SElf esteem problems lesson if someone truly listens nomatter what.
that's just my 2 cents....
HUgs all around
Carolyn J
LOBPIadult/71
that's just my 2 cents....
HUgs all around
Carolyn J
LOBPIadult/71
Carolyn J
Adult LOBPI
Adult LOBPI
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LJSL0330
- Posts: 52
- Joined: Wed Feb 27, 2008 9:09 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. Only surgical intervention was muscle lengthening at 2-3 y/o. PT at 35 which increased passive ROM by did not improve active ROM. Also have scoliosis due to left shoulder "hiking."
- Location: Evansville, Indiana
Re: Can we talk about puberty & bpi ? experienced mom advice please
I have to agree with Carolyn 110%! Don't blow off anything she says as just being a teenager... self-esteem can be so damaged when we aren't listened to or taken seriously! My mother pretty much blew off anything I said about being unhappy and told me "just get over it."
The biggest issue for me when I was going through puberty some 25 years ago - can I REALLY be this old?!?! - was self-esteem. Puberty is when, I think, self-esteem issues are the worst for any kid. As girl, with an OBPI, it certainly wasn't easier for me.
In addition to all the normal growing up "crap," there were the additional dramas related to fitting in:
"Oh my god, I REALLY am soooooooooo different!"
"I can't do gym like everyone else; they make fun of me."
"I can't wear the tank tops/halters/swimsuit I want!It doesn't fit right/shows off how crippled my arm is."
"I want to be a cheerleader/athlete, but I CAN'T do it!"
I always felt awful about myself and thought all the time about how unfair it was that I was "crippled." But I have a feeling that with a mom like you that she's never felt that way or been called "crippled" - my mom called me that all the time.
Now, I'm not saying your daughter will go through the exact same things I did, but some of them may crop up - especially the clothes thing - depending on how severe her limitations are. Just help her find ways to make things work and keep the communications lines open! She will get through it - we all do!
Lisa
LOBPI/41
The biggest issue for me when I was going through puberty some 25 years ago - can I REALLY be this old?!?! - was self-esteem. Puberty is when, I think, self-esteem issues are the worst for any kid. As girl, with an OBPI, it certainly wasn't easier for me.
In addition to all the normal growing up "crap," there were the additional dramas related to fitting in:
"Oh my god, I REALLY am soooooooooo different!"
"I can't do gym like everyone else; they make fun of me."
"I can't wear the tank tops/halters/swimsuit I want!It doesn't fit right/shows off how crippled my arm is."
"I want to be a cheerleader/athlete, but I CAN'T do it!"
I always felt awful about myself and thought all the time about how unfair it was that I was "crippled." But I have a feeling that with a mom like you that she's never felt that way or been called "crippled" - my mom called me that all the time.
Now, I'm not saying your daughter will go through the exact same things I did, but some of them may crop up - especially the clothes thing - depending on how severe her limitations are. Just help her find ways to make things work and keep the communications lines open! She will get through it - we all do!
Lisa
LOBPI/41
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F-Litz
- Posts: 970
- Joined: Fri May 26, 2006 6:53 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI, LTBPI at age 6.5, Sensory Issues, CP, Diaphragm Weakness, Aspberger's
- Location: Ambler, PA
Re: Can we talk about puberty & bpi ? experienced mom advice please
thank you all for responding but what I am really looking for is information about what may be "global" changes in the bpi issues specifically that come during the time of puberty.
are there specifics things that everyone experiences with the bpi during puberty?
is it a time for contractures to worsen?
a time for pain to change and become more present?
is it a time for less function - like during growth spurts?
is this when scoliosis appears more frequently? (so should I take her to an ortho to get checked?)
how about when a young women is in her cycle - does this affect them with pain, etc.? (because I know that when maia is sick with a cold or something, she has increased pain)
I want to know if there are changes that everyone experiences so that we can prepare for them, maybe find remedies/therapies to fend them off, or certain activities that may be more helpful at this time....
don't mean to offend anyone who has answered so far - thank you for responding -- but I still am looking for these different answers...
-francine
are there specifics things that everyone experiences with the bpi during puberty?
is it a time for contractures to worsen?
a time for pain to change and become more present?
is it a time for less function - like during growth spurts?
is this when scoliosis appears more frequently? (so should I take her to an ortho to get checked?)
how about when a young women is in her cycle - does this affect them with pain, etc.? (because I know that when maia is sick with a cold or something, she has increased pain)
I want to know if there are changes that everyone experiences so that we can prepare for them, maybe find remedies/therapies to fend them off, or certain activities that may be more helpful at this time....
don't mean to offend anyone who has answered so far - thank you for responding -- but I still am looking for these different answers...
-francine
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marieke
- Posts: 1627
- Joined: Fri Apr 01, 2005 6:00 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008. - Location: Montreal, Qc, Canada
- Contact:
Re: Can we talk about puberty & bpi ? experienced mom advice please
I ended up with scoliosis during a growth spurt.. it showed up when I was 15-16, so quite late, but I grew late!
I had more pain when I was stressed, and high school (grade 7-8-9 especially, so 13-15) were full of anxiety for me so I remember that more.
My period didn't change pain levels for my BPI at the time,(though it does now, and affects my other spinal cord injury quite a bit). But I am sure that it can for others.
Marieke 33, LOBPI
I had more pain when I was stressed, and high school (grade 7-8-9 especially, so 13-15) were full of anxiety for me so I remember that more.
My period didn't change pain levels for my BPI at the time,(though it does now, and affects my other spinal cord injury quite a bit). But I am sure that it can for others.
Marieke 33, LOBPI
Re: Can we talk about puberty & bpi ? experienced mom advice please
Well, first I need to stop freaking out that Maia is not a little girl anymore. Still shocked though, shouldn't she be like...5 now? Not almost a teenager?
I have a couple of thoughts, one is that she'll be as moody and up and down and this-is-THE-END-of-the-WORLD as any other kid going through this.
The second is that I don't remember a whole lot of BPI issues at that age, but being super sensitive about EVERYTHING up to and including the injury. I've also noticed that when I have pain either through cramps or if I hurt something being a spaz (side note - growing plus coordination that is iffy at best may lead to more tripping, wrist and ankle injuries, etc) then I get tired a lot faster because it compounds on the pain I'm already dealing with.
So watch out for the overtired and the touchy and the uncoordination. And realize that she has no perspective because she's a kid and she really does feel like every little thing is the worst ever, including and especially her injured arm. Also, please keep her talking so you'll know if things get too catty at school and you need to step in.
Happy puberty!
Carrie
I have a couple of thoughts, one is that she'll be as moody and up and down and this-is-THE-END-of-the-WORLD as any other kid going through this.
The second is that I don't remember a whole lot of BPI issues at that age, but being super sensitive about EVERYTHING up to and including the injury. I've also noticed that when I have pain either through cramps or if I hurt something being a spaz (side note - growing plus coordination that is iffy at best may lead to more tripping, wrist and ankle injuries, etc) then I get tired a lot faster because it compounds on the pain I'm already dealing with.
So watch out for the overtired and the touchy and the uncoordination. And realize that she has no perspective because she's a kid and she really does feel like every little thing is the worst ever, including and especially her injured arm. Also, please keep her talking so you'll know if things get too catty at school and you need to step in.
Happy puberty!
Carrie
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Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: Can we talk about puberty & bpi ? experienced mom advice please
Lisa,
Are you SURE you didn't live in my house????????????
We had VERY SIMILAR Lives...
Fitz, It's ALL WEIRD in Puberty. It's a crap shoot what Maia will have or experience. The Best idea is to take One Day At A Time....& enjoy the 24 hr day that you're in.
Cartolyn J
LOBPI adult/71 {Excuse to be bossy & I love it
Are you SURE you didn't live in my house????????????
We had VERY SIMILAR Lives...
Fitz, It's ALL WEIRD in Puberty. It's a crap shoot what Maia will have or experience. The Best idea is to take One Day At A Time....& enjoy the 24 hr day that you're in.
Cartolyn J
LOBPI adult/71 {Excuse to be bossy & I love it
Carolyn J
Adult LOBPI
Adult LOBPI
-
F-Litz
- Posts: 970
- Joined: Fri May 26, 2006 6:53 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI, LTBPI at age 6.5, Sensory Issues, CP, Diaphragm Weakness, Aspberger's
- Location: Ambler, PA
Re: Can we talk about puberty & bpi ? experienced mom advice please
Carrie - you are a hoot... yes - she's grown up!! She's just one inch shorter than me!
Marieke - since she has diaphragm issues, etc. I think this bring her higher risk for scoliosis so we are going to watch this carefully. I am planning on taking her to an ortho doc for a full gait analysis to see if the leg length difference is true or if it's a rotated pelvis, etc. She definitely limps.
We went to the doctor today (regular peds doc) and she was checked for scoliosis, etc. so far so good...but she IS VERY sensitive - her whole body seems to be incredibly sensitive in every way - so her sensory processing stuff and her dyspraxia issues are completely out of whack. I think - well I'm hoping it will settle down once the first week of school is over and she's over the "hump".
Her new school has stairs - this is the first time she has to navigate stairs at all and especially with crowds -- she has it in her 504 plan that she can leave the classroom 5 minutes early with a buddy to avoid the crowds but I am wondering if I should actually do this.... I want to give her a chance to do it on her own first to see what works and what doesn't. I think it's best to try and reduce the differences at school if possible.
One day at a time...
thanks,
francine
Marieke - since she has diaphragm issues, etc. I think this bring her higher risk for scoliosis so we are going to watch this carefully. I am planning on taking her to an ortho doc for a full gait analysis to see if the leg length difference is true or if it's a rotated pelvis, etc. She definitely limps.
We went to the doctor today (regular peds doc) and she was checked for scoliosis, etc. so far so good...but she IS VERY sensitive - her whole body seems to be incredibly sensitive in every way - so her sensory processing stuff and her dyspraxia issues are completely out of whack. I think - well I'm hoping it will settle down once the first week of school is over and she's over the "hump".
Her new school has stairs - this is the first time she has to navigate stairs at all and especially with crowds -- she has it in her 504 plan that she can leave the classroom 5 minutes early with a buddy to avoid the crowds but I am wondering if I should actually do this.... I want to give her a chance to do it on her own first to see what works and what doesn't. I think it's best to try and reduce the differences at school if possible.
One day at a time...
thanks,
francine