Re: Y at the top of 'butt crack' or bottom of spine

[Guest guest]

Hi ,

I have twins too, one with clubfoot, one without.

They were 7 weeks early (4lb 3oz) and spent 3 weeks in

NICU by the way, similar to yours. And both of

them have a rather deep 'dimple' at the bottom of

their spine too...

I was a bit worried about that at first as well but

since they seemed to move their legs normally and no

doctor ever mentioned anything about it I figured it

must be ok.

They are almost 3 years old now and are walking,

running, jumping, all completely normal, so it

obviously didn't mean anything. Both learned to walk

at 17 months by the way (I read that 15 months is the

average, so that's still normal).

I hope this helps,

with (*9/02)

and Alister (*9/02, RCF, Ponseti method, UK)

--- valerie ciccione

wrote:

> I may have missed a few posts about this but I just

> wanted to add to this...

>

> Avery has LCF and while I was pregnant they had us

> do an Amnio to rule out SB and it did, but we still

> went to talk to a genetic counselor (is that a

> normal process, does anyone know??). So when she was

> born they checked her out and told us everything was

> fine but she did come 8 weeks early and spent a

> month in the NICU (she was 3lb 10oz) so while she

> was there she was always very wrapped up and I

> didn't notice until I got her home that she had a

> " Y " looking

> 'butt crack' so of course I panicked ... since then

> I have asked every nurse, doctor or anyone in the

> medical field to look at that and tell me if it

> looked like something to be concerned with... they

> would all tell me it looked fine but I knew in my

> heart it didn't seem right but finally I got my new

> pediatrician to have an ultrasound on it and that

> came back GOOD. I was very relieved to find that out

> but I still look at it all the time and she is just

> over a year old. She has full mobility of her legs

> and is actually VERY flexible (CF babies seem to

> be?!?) but she doesn't walk yet ... I am pretty

> sure she will but it is always a concern in the back

> of my mind... even though I did ask the Orthopedic

> and she said of course she will walk and I started

> crying with relief and she didn't realize that I had

> been that worried about it ...I am hoping that her

> not walking yet is due to the casting and DBB... so

> I find it interesting to hear more of you talk about

> this 'thing' on the top of

> their 'butt crack' or at the bottom of the spine

> (which ever way I should say it!!!) ... how old are

> all of the babies that have this type of 'mark' ??

> are they walking? someone had mentioned the phrase

> 'spina bifida occulta' to me and I still don't know

> if that could be it... who would rule that out? the

> Orthopedic? I just don't seem to get any answers...

> I am enjoying my baby but I too feel like I am

> always looking for something else. I never had any

> concerns with my older daughter (now 5) and then I

> haven't had any with Avery's twin sister but it a

> constant worry with Avery?!?!? The high-risk Drs do

> that to you when they detect something then once the

> baby is born I felt like we were left high and dry

> with a bunch of unanswered questions....

>

> WOW.. I didn't mean to write a book about this...

> sorry but please let me know if any of you have had

> an similar experiences with this or if anyone has

> any advice to give .... my ears are anxiously

> awaiting!!!

>

> Thanks so much for listening...

>

> mommy to:

> Chesney just turned 5

> Delaney just turned one

> Avery just turned one also and has LCF DBB 20/7

>

> Joy wrote:

>

>

> --- wrote:

>

> > I thought Spina Bifida & club foot are very

> related.

>

> Well, kinda. Our newest baby to arrive in September

> is supposed to have spina

> bifida and bilateral clubfeet. The clubfeet are

> part of the spina bifida. In

> Rose's case, there was no reason for the clubfoot

> other than it happened.

> According to the neonatologist and genetic

> counselor, this baby and Rose are

> entirely individual cases and not linked. Even with

> Rose's sacral dimple. I

> find it hard to believe there isn't some

> correlation, but hey, I'm no doctor.

>

> I think clubfoot can be very related to spina

> bifida, but I don't think spina

> bifida is very related to clubfoot if that makes

> much sense!

>

> Joy

>

> >

> >

> >

> > >

> > > > OK this is veering off of feet but Kelsey has

> that

> > > > little pucker at the top of her butt as well.

> As an

> > > > infant, they did an ultrasound to rule out

> spina

> > > > bifida because it also it also has a skin tag

> inside

> > > > it which I guess can be an indicator. It

> turned out

> > > > to be nothing but that is funny that another

> little

> > > > one on here has it as well.

> > >

> > > When Rose was born, she had a sacral dimple

> (which can indicate

> > spina bifida

> > > occulta-meaning closed spina bifida). The u/s

> she had ruled that

> > out. Each

> > > doctor we saw, though, would check her feet and

> check her diaper

> > area. I have

> > > to wonder if it's pretty common in clubfoot

> children.

> > >

> > > Joy

> > >

> > >

>

http://www.geocities.com/joybelle15/rosesclubfootpage.html

> > >

> > >

> > >

> > >

> ____________________________________________________

> > > Start your day with Yahoo! - make it your home

> page

> > > http://www.yahoo.com/r/hs

> >

> >

> >

>

>

>

http://www.geocities.com/joybelle15/rosesclubfootpage.html

>

> __________________________________________________

>

[Guest guest]

,

We noticed Elijah's " Y " right away, or rather his Dr did. It looked

pretty normal to me but then I didnt know anything about SB. All

our other children walked between 11 and 13 months. Elijah was just

a little late at 14 months.

One thing I noticed about Elijah was that he stood a little early at

7 months and just took his time. Our other babies (3 of them) would

take steps and risk falling. So their first steps were taken one or

two at a time. Elijah was more cautious, walked later but his first

steps were about 7-8 and he would go longer distances quicker than

the others did. Does that make sense?

I think Elijah being a little later than the rest was a confidence

thing rather than having to do with his leg strength b/c before he

could walk, he was (and still is) climbing over, under and through

EVERYTHING.

Does Avery pull up on things and stand for extended periods?

Lori

Mom to

13

Nova 9

Ethan almost 3

and Elijah 16 months RCF atypical DBB nights only

[Guest guest]

Ava doesn't have a Y but she does have the dimple. Our first Ortho's

never even examined her. When we saw Dr. Ponseti he examined her from

head to toes. She had a deep dimple and thick hairy patch. He of course

said it was nothing to worry about but when we came home I had my

pediatrician write for an MRI. All is well. Worried for nothing! He did

say that it was very common for CF babies to have sometype of dimple,

hairy patch etc. Why I don't know?

I did meet a family when I was out in Iowa who's son did have spina

bifida occulta. Evidently the base of the spinal cord becomes tethered

and can cause some problems. I do know he had his fixed and he is about

18mnths now. He walks but not real steady yet.

HTH,

KK

[Guest guest]

That is so great to hear that all is well with both of you little ones... thanks

for your input.... I feel so much better as time goes by just because she seems

to be doing new things each and every day... it is so hard to not compare the

two of them but I try... Avery is just now pulling up onto her knees but not all

the way up to standing by I see it coming soon... when I put her against the

couch she stays standing for several minutes... she is a little unsteady but she

does it... just doesn't have all of her balance but she has come so far... we

did casting when she first got out of the NICU and she wasn't even 5 lbs yet so

I think maybe we started a little to early then we had some trouble when we went

to part time DBB wear... we took them off completely and thought we had to do

surgery and I put my story on this support group and you all talked me out of

that and got us to start over with the Ponsetti method.. we just did that is May

and all is going so good but I kept

thinking that the reason she is a little 'delayed' was because we started so

early and she never got to build up strenght in certain areas... she has lots of

strenght in her legs but not in middle area ... if you know what I mean... she

is getting it now but was just a little delayed.... Delaney is just now starting

to walk and this should be their due date right about now.... so I am thinking

Avery probably won't walk until close to a year and a half.... she just might

surprise me.... she is so determined... she is very fast at getting around so I

think she is somewhat content but I am pretty confident that it is going to come

some time this fall or winter....

Thanks for responding....

wrote:

Hi ,

I have twins too, one with clubfoot, one without.

They were 7 weeks early (4lb 3oz) and spent 3 weeks in

NICU by the way, similar to yours. And both of

them have a rather deep 'dimple' at the bottom of

their spine too...

I was a bit worried about that at first as well but

since they seemed to move their legs normally and no

doctor ever mentioned anything about it I figured it

must be ok.

They are almost 3 years old now and are walking,

running, jumping, all completely normal, so it

obviously didn't mean anything. Both learned to walk

at 17 months by the way (I read that 15 months is the

average, so that's still normal).

I hope this helps,

with (*9/02)

and Alister (*9/02, RCF, Ponseti method, UK)

--- valerie ciccione

wrote:

> I may have missed a few posts about this but I just

> wanted to add to this...

>

> Avery has LCF and while I was pregnant they had us

> do an Amnio to rule out SB and it did, but we still

> went to talk to a genetic counselor (is that a

> normal process, does anyone know??). So when she was

> born they checked her out and told us everything was

> fine but she did come 8 weeks early and spent a

> month in the NICU (she was 3lb 10oz) so while she

> was there she was always very wrapped up and I

> didn't notice until I got her home that she had a

> " Y " looking

> 'butt crack' so of course I panicked ... since then

> I have asked every nurse, doctor or anyone in the

> medical field to look at that and tell me if it

> looked like something to be concerned with... they

> would all tell me it looked fine but I knew in my

> heart it didn't seem right but finally I got my new

> pediatrician to have an ultrasound on it and that

> came back GOOD. I was very relieved to find that out

> but I still look at it all the time and she is just

> over a year old. She has full mobility of her legs

> and is actually VERY flexible (CF babies seem to

> be?!?) but she doesn't walk yet ... I am pretty

> sure she will but it is always a concern in the back

> of my mind... even though I did ask the Orthopedic

> and she said of course she will walk and I started

> crying with relief and she didn't realize that I had

> been that worried about it ...I am hoping that her

> not walking yet is due to the casting and DBB... so

> I find it interesting to hear more of you talk about

> this 'thing' on the top of

> their 'butt crack' or at the bottom of the spine

> (which ever way I should say it!!!) ... how old are

> all of the babies that have this type of 'mark' ??

> are they walking? someone had mentioned the phrase

> 'spina bifida occulta' to me and I still don't know

> if that could be it... who would rule that out? the

> Orthopedic? I just don't seem to get any answers...

> I am enjoying my baby but I too feel like I am

> always looking for something else. I never had any

> concerns with my older daughter (now 5) and then I

> haven't had any with Avery's twin sister but it a

> constant worry with Avery?!?!? The high-risk Drs do

> that to you when they detect something then once the

> baby is born I felt like we were left high and dry

> with a bunch of unanswered questions....

>

> WOW.. I didn't mean to write a book about this...

> sorry but please let me know if any of you have had

> an similar experiences with this or if anyone has

> any advice to give .... my ears are anxiously

> awaiting!!!

>

> Thanks so much for listening...

>

> mommy to:

> Chesney just turned 5

> Delaney just turned one

> Avery just turned one also and has LCF DBB 20/7

>

> Joy wrote:

>

>

> --- wrote:

>

> > I thought Spina Bifida & club foot are very

> related.

>

> Well, kinda. Our newest baby to arrive in September

> is supposed to have spina

> bifida and bilateral clubfeet. The clubfeet are

> part of the spina bifida. In

> Rose's case, there was no reason for the clubfoot

> other than it happened.

> According to the neonatologist and genetic

> counselor, this baby and Rose are

> entirely individual cases and not linked. Even with

> Rose's sacral dimple. I

> find it hard to believe there isn't some

> correlation, but hey, I'm no doctor.

>

> I think clubfoot can be very related to spina

> bifida, but I don't think spina

> bifida is very related to clubfoot if that makes

> much sense!

>

> Joy

>

> >

> >

> >

> > >

> > > > OK this is veering off of feet but Kelsey has

> that

> > > > little pucker at the top of her butt as well.

> As an

> > > > infant, they did an ultrasound to rule out

> spina

> > > > bifida because it also it also has a skin tag

> inside

> > > > it which I guess can be an indicator. It

> turned out

> > > > to be nothing but that is funny that another

> little

> > > > one on here has it as well.

> > >

> > > When Rose was born, she had a sacral dimple

> (which can indicate

> > spina bifida

> > > occulta-meaning closed spina bifida). The u/s

> she had ruled that

> > out. Each

> > > doctor we saw, though, would check her feet and

> check her diaper

> > area. I have

> > > to wonder if it's pretty common in clubfoot

> children.

> > >

> > > Joy

> > >

> > >

>

http://www.geocities.com/joybelle15/rosesclubfootpage.html

> > >

> > >

> > >

> > >

> ____________________________________________________

> > > Start your day with Yahoo! - make it your home

> page

> > > http://www.yahoo.com/r/hs

> >

> >

> >

>

>

>

http://www.geocities.com/joybelle15/rosesclubfootpage.html

>

> __________________________________________________

>

[Guest guest]

--- valerie ciccione wrote:

*snip*

> this 'thing' on the top of

> their 'butt crack' or at the bottom of the spine (which ever way I should

> say it!!!) ... how old are all of the babies that have this type of 'mark' ??

Rose is six now and the sacral dimple has always been there and probably always

will be.

> are they walking?]

She walked at 13 months.

> someone had mentioned the phrase 'spina bifida occulta' to

> me and I still don't know if that could be it... who would rule that out?

If they've done an u/s it's been ruled out. You could request (would it be an

MRI??) to determine for sure, but an u/s should be sufficient.

The dimple or marks are very common and very often don't mean anything. Just a

variation of normal. It sounds to me as if the spina bifida occulta has been

ruled out already.

> the

> Orthopedic? I just don't seem to get any answers... I am enjoying my baby but

> I too feel like I am always looking for something else. I never had any

> concerns with my older daughter (now 5) and then I haven't had any with

> Avery's twin sister but it a constant worry with Avery?!?!? The high-risk Drs

> do that to you when they detect something then once the baby is born I felt

> like we were left high and dry with a bunch of unanswered questions....

I think the experience of seeing a perinatologist and a genetic counselor can

put anybody in a tither! It does sound like the likelihood of sbo has been

ruled out (as it was for Rose).

Joy

http://www.geocities.com/joybelle15/rosesclubfootpage.html

____________________________________________________

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