Re: Question on Walking & Development

[Guest guest]

Hi there,

In regards to your problem with and not wanting to put weight on her feet...That is not in our case with our son Ethan..

Apart from having small eye openings, he is just like any other child developmentally and physically He is a bright, energetic

wee man! He is 4 1/2, and has had no surgeries, he got glasses 8 months ago as he did have an astigmatism, which is

a comman eye condition with anyone not just people with BPES...Surgery is not in our future either....his opthalmologist said it

would be cosmetic only as Ethan compensates well with just slightly raising his eyelids....and with his glasses his vision is 20/20:)

I hope you get some answers though, it must be very frustrating not knowing, it has to be something completely seperate to BPES as that

only affects the eyes and in some woman the POF if they are type 1....Let us know when you find out anything,

Leanne and family NZ

-- blepharophimosis Question on Walking & Development

Hi Everyone,

, 's mum here again... with another question!

I took for her vaccinations today to our GP and casually asked him if he thought it was strange that at 14 months will not put any weight on her feet. She tries to pull-up, but she has difficulty in going on the flat of her feet. She shuffles around on her bum, doesn't crawl as such. But what I am mainly worried about is that she doesn't have any inclination to put weight on her feet - so no bouncing or pulling up to standing. If you do make her stand, she goes on the outside of her feet, or her tippy-toes.. but then drops to her bum. The doctor said I should bring her to the paediatrician who referred us to see the geneticist etc.. as he thinks it's not right that she is not putting any weight on her feet either, and said he 'Humm...wasn't sure!'

Just wondering if anyone knows, could this be related to BPES - is there any cases of the kids out there that have BPES having difficulty walking etc...? I am taking her to the paediatrician on the 18th July for a checkup, so fingers crossed it turns out to be nothing...but I was just curious to see if anyone had experienced this?

Thanks so much!

Kildare, IrelandSend instant messages to your online friends http://uk.messenger.

[Guest guest]

Dear , There are four of us in my family with BPES and we all walked and bounced with no problems. I started to walk at 7 months. But I'm 47 and have come to realize that there is so much about this disorder that is not known that anything could be possible. I would make the doctor check this out. I wouldn't take a wait and see answer. I also am a nurse, so I know sometimes it's hard to make the doctors listen to you. Good Luck and I pray everything is okay. Janicelisa obrien <hplisaobr@...> wrote: Hi Everyone, , 's mum here again... with another question! I took for her vaccinations today to our GP and casually asked him if he thought it was strange that at 14 months will not put any weight on her feet. She tries to pull-up, but she has difficulty in going on the flat of her feet. She shuffles around on her bum, doesn't crawl as such. But what I am mainly worried about is that she doesn't have any inclination to put

weight on her feet - so no bouncing or pulling up to standing. If you do make her stand, she goes on the outside of her feet, or her tippy-toes.. but then drops to her bum. The doctor said I should bring her to the paediatrician who referred us to see the geneticist etc.. as he thinks it's not right that she is not putting any weight on her feet either, and said he 'Humm...wasn't sure!' Just wondering if anyone knows, could this be related to BPES - is there any cases of the kids out there that have BPES having difficulty walking etc...? I am taking her to the paediatrician on the 18th July for a checkup, so fingers crossed it turns out to be nothing...but I was just curious to see if anyone had experienced this? Thanks so much! Kildare, IrelandSend instant messages to your online friends http://uk.messenger.

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Hi ,Grace is now 2 1/2 and only began walking 2 months ago. She has delays with all her milestones but is progressing at her own steady rate. She was very reluctant to have any weight on her feet up until the age of about 18 months. If you tried to get her to stand she would pull her legs up towards her body. The only time she would have her feet on the floor is if she was in her bouncer that hung from the door.We asked physio about this. The only reason they could suggest was that she had slightly weak muscle tone in her legs which were preventing her from taking weight. We had to do exercises with her to build her muscles and to encourage her to stand. She began pulling herself up in Dec ( 22 months) and has not looked back since. They also wondered about the size of her feet causing problems - walking on the sides. Grace is very small. Even now she only weighs 19 lbs. They said that her small feet may cause balance problems and again the muscle tone

did not allow her to correctly position her feet.Hope this helpsNicola and Grace, Bingley, England.lisa obrien <hplisaobr@...> wrote: Hi Everyone, , 's mum here

again... with another question! I took for her vaccinations today to our GP and casually asked him if he thought it was strange that at 14 months will not put any weight on her feet. She tries to pull-up, but she has difficulty in going on the flat of her feet. She shuffles around on her bum, doesn't crawl as such. But what I am mainly worried about is that she doesn't have any inclination to put weight on her feet - so no bouncing or pulling up to standing. If you do make her stand, she goes on the outside of her feet, or her tippy-toes.. but then drops to her bum. The doctor said I should bring her to the paediatrician who referred us to see the geneticist etc.. as he thinks it's not right that she is not putting any weight on her feet either, and said he 'Humm...wasn't sure!' Just wondering if anyone knows, could this be related to BPES - is there any cases of the kids out there that have BPES having difficulty walking etc...? I am taking her to the paediatrician on the 18th July for a checkup, so fingers crossed it turns out to be nothing...but I was just curious to see if anyone had experienced this? Thanks so much! Kildare, IrelandSend instant messages to your online friends http://uk.messenger.

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Hi there my son has BPES and runs like you would not believe from about 9 months.... my advice for you is that when you see the pediatrician make him refer you to a orthopaedic surgeon who specializes in stuff like that. my daughter (no BPES) did the same thing and it turned out that she had 2 things... "flat feet"  (standing flat hurt her arches) and "bowed legs"  i too am a nurse and have seen it many many times where the babies just did not want to walk and when i worked on ped's it seemed the babies that learned to "crawl" or scoot around on their bums were the ones to usually do this, however this is just in my personal experience and i think that seeing a specialist is the way to go even if its just to ease your worries... keep us posted and let us know!as for the BPES aspect (just my honest opinion) i don't think its related whatsoever! there are alot of people born out there with poor muscle tone with  AND without BPESask for a second opinion if you are still not satisfiedtonikkaedmonton alberta CANADAOn 6-Jul-07, at 6:21 AM, lisa obrien wrote:Hi Everyone, , 's mum here again... with another question!I took for her vaccinations today to our GP and casually asked him if he thought it was strange that at 14 months will not put any weight on her feet.  She tries to pull-up, but she has difficulty in going on the flat of her feet.  She shuffles around on her bum, doesn't crawl as such. But what I am mainly worried about is that she doesn't have any inclination to put weight on her feet - so no bouncing or pulling up to standing.  If you do make her stand, she goes on the outside of her feet, or her tippy-toes.. but then drops to her bum.  The doctor said I should bring her to the paediatrician who referred us to see the geneticist etc.. as he thinks it's not right that she is not putting any weight on her feet either, and said he 'Humm...wasn't sure!'Just wondering if anyone knows, could this be related to BPES - is there any cases of the kids out there that have BPES having difficulty walking etc...?  I am taking her to the paediatrician on the 18th July for a checkup, so fingers crossed it turns out to be nothing...but I was just curious to see if anyone had experienced this? Thanks so much! Kildare, IrelandSend instant messages to your online friends http://uk.messenger. Tonikka & Chrischeck out our blogwww.nottynurse.blogspot.com

[Guest guest]

Hi

Me, again! Don't panic about not putting weight on her feet

yet. Both my sisters kids, without BPES, were late walkers and are

healthy kids. I think we are all too eager to link any slight

deviation from the average to BPES. Most kids with BPES have no

other problems.

The reason I am responding though is because my daughter, Kirsten

(nearly 5) is slightly hypotonic. Although she walked on her first

birthday, she is now about 9 months behind in her gross motor

skills. She stood on 1 leg late, hopped and skipped late and is

always last in any running races. But, she can read very well, is

very precise in writing and drawing and attracts friends like bees

do honey.

Kirsten saw a physio who gave us some exercises to do at home to

strengthen her core muscles. The physio has been fantastic and I

would encourage you to ask your paed for a referral when you see him

on the 18th. He/ she may suggest it anyway. Kirsten no longer sees a

physio and her paed discharged her this year.

I will also cross fingers that is fine. Let us know how it

goes.

Regards

Parsons

Harrogate (UK)

--- In blepharophimosis , lisa obrien <hplisaobr@...>

wrote:

>

> Hi Everyone,

>

> , 's mum here again... with another question!

>

> I took for her vaccinations today to our GP and casually

asked him if he thought it was strange that at 14 months

will not put any weight on her feet. She tries to pull-up, but she

has difficulty in going on the flat of her feet. She shuffles

around on her bum, doesn't crawl as such. But what I am mainly

worried about is that she doesn't have any inclination to put weight

on her feet - so no bouncing or pulling up to standing. If you do

make her stand, she goes on the outside of her feet, or her tippy-

toes.. but then drops to her bum. The doctor said I should bring

her to the paediatrician who referred us to see the geneticist etc..

as he thinks it's not right that she is not putting any weight on

her feet either, and said he 'Humm...wasn't sure!'

> Just wondering if anyone knows, could this be related to BPES - is

there any cases of the kids out there that have BPES having

difficulty walking etc...? I am taking her to the paediatrician on

the 18th July for a checkup, so fingers crossed it turns out to be

nothing...but I was just curious to see if anyone had experienced

this?

>

> Thanks so much!

>

>

> Kildare, Ireland

>

> Send instant messages to your online friends

http://uk.messenger.

>

[Guest guest]

Hi ,

Thanks so much for the update and all the info, your a star!

We took to the doc and they x-ray'd her from head to toe and said she was fine, that she was a classic case of a 'Bottom Shuffler' hee hee! They did say she was behind in her motor development, and we are currently waiting on an apt with (i think this is how its spelt!) Neuro Physio Therapist??? So all seems to be ok, thankfully! But I agree with you on the heightened sensitivity on BPES - we are much more inclined to get things checked out, and the doctors are more prepared to investigate things! Sometimes I find it great, other times its a real pain!

So we're just waiting now to see the surgeon here to get her slings re-done, then she has a heart echo apt follow up and then... off to see Mr in Aug! It's all go!

Hope all is well with you!

blepharophimosis Re: Question on Walking & Development

Hi Me, again! Don't panic about not putting weight on her feet yet. Both my sisters kids, without BPES, were late walkers and are healthy kids. I think we are all too eager to link any slight deviation from the average to BPES. Most kids with BPES have no other problems.The reason I am responding though is because my daughter, Kirsten (nearly 5) is slightly hypotonic. Although she walked on her first birthday, she is now about 9 months behind in her gross motor skills. She stood on 1 leg late, hopped and skipped late and is always last in any running races. But, she can read very well, is very precise in writing and drawing and attracts friends like bees do honey.Kirsten saw a physio who gave us some exercises to do at home to strengthen her core muscles. The physio has been fantastic and I would encourage you to ask your paed for a referral when you see him on the

18th. He/ she may suggest it anyway. Kirsten no longer sees a physio and her paed discharged her this year.I will also cross fingers that is fine. Let us know how it goes.Regards ParsonsHarrogate (UK)>> Hi Everyone,> > , 's mum here again... with another question!> > I took for her vaccinations today to our GP and casually asked him if he thought it was strange that at 14 months will not put any weight on her feet. She tries to pull-up, but she has difficulty in going on the flat of her feet. She shuffles around on her bum, doesn't crawl as such. But what I am mainly worried about is that she doesn't have any inclination to put weight on her

feet - so no bouncing or pulling up to standing. If you do make her stand, she goes on the outside of her feet, or her tippy-toes.. but then drops to her bum. The doctor said I should bring her to the paediatrician who referred us to see the geneticist etc.. as he thinks it's not right that she is not putting any weight on her feet either, and said he 'Humm...wasn' t sure!' > Just wondering if anyone knows, could this be related to BPES - is there any cases of the kids out there that have BPES having difficulty walking etc...? I am taking her to the paediatrician on the 18th July for a checkup, so fingers crossed it turns out to be nothing...but I was just curious to see if anyone had experienced this?> > Thanks so much!> > > Kildare, Ireland> > Send instant messages to your online friends http://uk.messenger .>

Send instant messages to your online friends http://uk.messenger.