Gait questions

[Bonnie]

I wonder about my daughter's walking. She has an ROBPI.

My daughter is 16 months old and has been walking since the middle of December. She has severe limitations in her shoulder and elbow. Her arm doesn't swing or balance her - it's like it's in an invisible sling. She has a 20 degree elbow contracture.

Anyway...I don't think that she walks normally. I have been waiting to see her "loosen up" and not fall over so easily. It doesn't seem to be happening. She still looks like a really early walker.

It's difficult to explain....I thought that her feet looked a bit odd but was never really sure. Today, at my other dd's swimming lesson, I was able to watch Avery walk around. She didn't always leave full footprints. She seems to walk on her toes a bit - especially as she goes faster. Her feet are also a wee bit pigeon-toed. She had a CT scan and they ruled out any CP.

Those of you who saw gait issues with your children, could you explain/describe it? I have to look after Avery on my own - the therapists here have NO experience or understanding of BPI.

Thank you very much,
Bonnie

[admin]

Bonnie, my son walked late too...about 14 1/2 months....at first we thought he had gait issues to, but eventually at the age of three and 1/2 he stopped. he is four and 1/2 now and gets around better than ever. Have her tested by early intervention they pretty much now, but as far as I am concerned I think this is pretty much just another side efeect of BPI !!!

[Bonnie]

Thanks. Avery is actually an early walker (11 months). She has been totally on her feet for nearly 4 months.

Professionals here don't understand BPI so I am reluctant to take time to see someone else who will just brush me off as a panicky mom.

Thanks. I don't really want to just wait if it's something that should be looked after. She falls really hard as it is (no protective reflexes) and has had some pretty major bumps on her head!

I appreciate your response.
Bonnie

[Francine_Litz]

Hi Bonnie - Maia had / has gait issues and PT is what makes it happen for her. She's had orthotics - about to get some new ones made up and well...I guess all I can say is that intensive PT really makes the difference for her.

-francine

[RAQUEL]

I'm new here so please bear with me. My 8 yo son also has OBPI. Through the years I have also worried about the positioning of his legs. He is EXTREMELY pigeon toed and it seems as if his knees turn in slightly. Is this all possibly related or am I just confusing what I'm reading?? I too have been brushed off at this concern that it was all a part of the body growing up. I have often wondered how he has not fallen over when I see him run. I have also finally moved forward with the whole surgery thing since his shoulder seems to be getting only worse as he grows. ANY info or any links that anyone can send me to would be GREATLY appreciated.
Thanks ahead of time
Raquel

[Bonnie]

Thanks Francine for your reply.

The difficulty I have is that Avery's PT doesn't understand her injury. She doesn't recognise even what I can see. She spends about 10 minutes every 6 weeks looking at Avery and saying how well she is doing (compared to some of her other kids who have severe CP, Avery is doing well but compared to my other daughter Avery is doing horribly!).

No one has mention orthotics - what are they? And "intensive PT" is non-existent. What can I do to get this pushed ahead and taken seriously? I would like to be able to go with some terminology and literature to prove my point! How sad is that....never-the-less it is our reality.

Could you describe Maia's gait issues?

TIA!!!
Bonnie

[Sophie's Mom]

Hi Bonnie,
Sophie was an early walker, too (9 months) - I think because crawling was so hard for her. She used to walk on her toes, like you described, but doesn't anymore. Now she's two and is a runner - and she has to constantly correct herself - kind of like a car with a low tire on one side? One thing we do at therapy that I think is for this (?) is put her on one of those tube things (like a big hot dog?) with one leg on either side (like riding a horse) and have her reach with her affected side - like putting a cookie or toy on her right side and make her reach for it. I believe it helps strengthen her torso. She also goes to a chiropractor who does very gentle manipulation and soft tissue manipulation (no manipulation on the neck) - actually, I'm not really sure what she does, but it really helps with the contractures - I think one of the major reasons for keeping her out of surgery so far.
Hope this helps (sorry for rambling). If you have questions, I can try to get our therapist's email to you?
Good luck.
Tina

[Lenni]

Hi Bonnie, Ashley walked like that for years, it has only been the last few years since starting school that she has become better at balancing herself! At physio I told the therapist that I wanted Ashley to work on her balance and she set up an obsticle course which Ashley did over and over again for a few years! She loved every minute too! There were stairs with a rail on the affected arm side, a series of low beams, like 2 inches off the floor, hoops to walk through, balls to throw and a tiny trampaline to jump on at the end. Within a short time she improved greatly. The other thing we did was Aqua therapy, the physio would only raise the pool down about 6 inches and we had Ashley hang on to the side of the pool and go up and down on her tipptoes. I hope this helps you Bonnie, just tell the Physio Therapist this is what you want to work on, that is what i did.

Good Luck,

Lenni

[admin]

bonnie,
my daughter meghan is 17 months old with a right obpi
and she also is having some gait issues. her ot says she seems to be doing much better but she falls frequently and is covered in bruises. it breaks my heart sometimes. the thing that bothers me the most is that she tries to protect her good arm when she falls because that is all she has to use. meg dosen't feel her right hand and she uses is to push up on as well, which isn't exactly like weight bearing because she has her wrist completely bent back to her hand and is not capable of lifting it at all. the other day she fell so hard on the pavement and skinned and bloodied her right hand in the process. the worst part was she never cried- she never felt it because of the nerve damage. it sounds like avery's injury is different than meg's in that meg's is very loose and her arm hangs completely limp. i really feel for our daughters and i hope avery's walking improves. on a positive note, meghan learned to climb on the coffee table and was up there dancing along to the wiggles yesterday!
and bonnie, where do you live? we are in new jersey .

[Lulumom]

Some other thoughts...Do you notice more pigeon-toeing on her BPI side? My dd's therapist told me that since BPI affects the total body, it can affect the toeing-in. The arm use affects the strength and stability of the trunk, which affects the strength and stability of the legs on down. It is something you can work on with PT, and you want to work on balance, strength building, stretching that trunk side, etc.

Also, some kids have sensory integration issues, which also lends itself to "clumsiness". I have a nephew, non-BPI, who tends to have this. There's a book called "The Sensitive Child" that talks about it.

Finally, toe-walking is something to watch too. My dd's therapist is always on the lookout for that (along with W sitting), because of postural problems and muscle issues (I presume the risk is shortening the calf muscle with toe walking, which then could have a snowball affect). The postural issues with W sitting are strength issues with the back, hip internal rotation (leading to pigeon-toeing???), knee rotation.

Again, I'm no therapist...just repeating things that have been told to me.

Lisa