Re: my baby girl

[Guest guest]

Hi Elissa and welcome to the group. Also, congratulations on your new little

angel (I swear that is what all of these children are). I bet she is

beautiful.

My daughter, Alaina, who is now 11 months old was born with

lipomyelomeningocele and tethered cord. She had laminectomy tether cord release

done on 7/29/05 when she was just two months old.

I don't know if you have read any of the past posts, but I did respond to

someone recently and kind of told our whole " story " !!! Take a look to see if

you can find them.

I would love to hear about Jesmarie and how she is doing. Alaina is doing

great. Regardless of anything, she is my sweet little angel and I love her to

death. She amazes me everyday and has taught me so much in just the short time

she has been here. She does not have movement/sensation in her feet, toes, or

ankles. It is also anticipated that she will have bowel and bladder issues.

At 11 months old, she is just starting to crawl...not any distance, but she gets

up on her hands and knees and gets around. She starting sitting up on her own

at about 6 months. We actually take her to the Spina Bifida clinic at

Children's Hospital of Philadelphia (we are from New Jersey) tomorrow. I'm

nervous, but I can't wait to see what the physical therapist has to say...I

personally as her mom think she is doing great!!! lol..

Please, e-mail back with any specific questions or concerns. There are not so

many out there with lipomyelomeningocele so i'm rarely able to chat with anyone.

Alaina didn't have a syrinx? I'm not quite sure what that is?

Hope to hear from you soon!

Tina

Elissa Mercado wrote:

Hi everyone, my name is Elissa. My youngest daughter, Jesmarie (4 months old)

was born with lipomyelomeningocele, tethered cord, and a syrinx. She just had

surgery on March 9th...laminectomy, detether, and draining of the syrinx. I

welcome any and all info, personal experience, whatever anyone has to offer. I

am still fairly new to this experience and am desperate for any help in

understanding what we are facing.

Thanks! Elissa

[Guest guest]

Tina,

Thank you for the reply and all of the info! Some questions if you don't mind

...you said Alaina had the surgey at 2 months...was she symptomatic before

the surgery? Which sympotoms? Feeling in feet, toes and ankles then? Could she

move her legs with no problem then? If she did not have symptoms then, did they

start right after surgery? If not, then when? I am trying to guess what and when

we should expect symptoms. So far all she is showing is an everted foot (used to

be drop foot, but now she can flex it and the reflex is normal again). She is

still mostly asymptomatic, but I am scared to be optimistic. I wonder what the

chances are that she will continue to be that way. The syrinx is a fluid filled

sac in the spinal cord. It is where the spinal cord should have ended, were it

not tethered. Her neurosurgeon was actually able to drain the syrinx, even

though he had not planned to do so. I am just so scared to be optimistic even

though so far she looks great. I would

just love to know if everyone looks fine after surgery and then the symptoms

start. Obviously I know that some people are symptomatic before surgery, but I

just wonder what the chances are that she will continue to be asymptomatic. I

know there is no definitive answer and all I can do is look at other people's

stories. So frustrating....thanks again for any and all info

Elissa

tina lesperance wrote:

Hi Elissa and welcome to the group. Also, congratulations on your new little

angel (I swear that is what all of these children are). I bet she is

beautiful.

My daughter, Alaina, who is now 11 months old was born with

lipomyelomeningocele and tethered cord. She had laminectomy tether cord release

done on 7/29/05 when she was just two months old.

I don't know if you have read any of the past posts, but I did respond to

someone recently and kind of told our whole " story " !!! Take a look to see if

you can find them.

I would love to hear about Jesmarie and how she is doing. Alaina is doing

great. Regardless of anything, she is my sweet little angel and I love her to

death. She amazes me everyday and has taught me so much in just the short time

she has been here. She does not have movement/sensation in her feet, toes, or

ankles. It is also anticipated that she will have bowel and bladder issues.

At 11 months old, she is just starting to crawl...not any distance, but she gets

up on her hands and knees and gets around. She starting sitting up on her own

at about 6 months. We actually take her to the Spina Bifida clinic at

Children's Hospital of Philadelphia (we are from New Jersey) tomorrow. I'm

nervous, but I can't wait to see what the physical therapist has to say...I

personally as her mom think she is doing great!!! lol..

Please, e-mail back with any specific questions or concerns. There are not so

many out there with lipomyelomeningocele so i'm rarely able to chat with anyone.

Alaina didn't have a syrinx? I'm not quite sure what that is?

Hope to hear from you soon!

Tina

Elissa Mercado wrote:

Hi everyone, my name is Elissa. My youngest daughter, Jesmarie (4 months old)

was born with lipomyelomeningocele, tethered cord, and a syrinx. She just had

surgery on March 9th...laminectomy, detether, and draining of the syrinx. I

welcome any and all info, personal experience, whatever anyone has to offer. I

am still fairly new to this experience and am desperate for any help in

understanding what we are facing.

Thanks! Elissa

[Guest guest]

Elissa,

Of course I don't mind! I would love to help!

Alaina was symptomatic before the surgery... she did not have the movement of

the toes, feet or ankles from the minute she was born. I am starting to see

that Alaina has more issues/damage than most with lipomyelomeningocele.

After the detethering surgery, the only thing that I as a mother think may be

different is her bowel movements and her anus. The nerves that control the

bowel and bladder are in the sacral area which is where the neurosurgeon was

doing the " untethering " . She is constipated a lot and her " hiney hole " (lack of

better term!!lol) seems to be open a lot of the time..not a lot of muscle tone

down there. I believe that she will definitely have issues with bowel/bladder

control...

As far as Alaina's leg movement goes, she kicks like crazy. Though she

definitely has a lot of weakness in her gluts (muscles right below the butt).

This was all before the surgery...

That is great that Jesmarie is doing so well! I would say to take one day at

a time and keep being optomistic...just be sure to always keep in the back of

your mind that there is always a chance of the cord retethering, especially in

lipomyelos because all of the tissue in there makes it easy for the cord to

reattach. This is something that I will have to watch for with Alaina too.

Do you follow up with a clinic or anything??? I take Alaina to a spina bifida

clinic where she is monitored every 6 months by a pediatrician, urologist,

ortho, and physical therapist. By keeping a close eye on things, we are able

to note any " changes " in Alaina's status. Right now that she is a baby, she

can't tell me " ooh, my legs feel weak " or " ooh, my back is starting to hurt me " .

These are all things that could possibly mean a retether....Its basically just

keeping up on things to try to prevent any further damage.

Like you said, all of this not knowing for sure is frustrating and scary. If

it helps you at all, I feel the same way. As time goes on, I try to just be

" guarded " optimistic and know that its all in God (or whoevers) hands with what

is going to happen. I can only love her, take care of her and do the best I

can to make sure that she stays as she is! Worrying all of the time only makes

you crazy! I have learned to just live for the day and enjoy and cherish

everything about Alaina and never take anything for granted!

Hope this helps! Again, anything I can do to help, just ask!

Tina

Elissa Mercado wrote:

Tina,

Thank you for the reply and all of the info! Some questions if you don't mind

...you said Alaina had the surgey at 2 months...was she symptomatic before

the surgery? Which sympotoms? Feeling in feet, toes and ankles then? Could she

move her legs with no problem then? If she did not have symptoms then, did they

start right after surgery? If not, then when? I am trying to guess what and when

we should expect symptoms. So far all she is showing is an everted foot (used to

be drop foot, but now she can flex it and the reflex is normal again). She is

still mostly asymptomatic, but I am scared to be optimistic. I wonder what the

chances are that she will continue to be that way. The syrinx is a fluid filled

sac in the spinal cord. It is where the spinal cord should have ended, were it

not tethered. Her neurosurgeon was actually able to drain the syrinx, even

though he had not planned to do so. I am just so scared to be optimistic even

though so far she looks great. I would

just love to know if everyone looks fine after surgery and then the symptoms

start. Obviously I know that some people are symptomatic before surgery, but I

just wonder what the chances are that she will continue to be asymptomatic. I

know there is no definitive answer and all I can do is look at other people's

stories. So frustrating....thanks again for any and all info

Elissa

tina lesperance wrote:

Hi Elissa and welcome to the group. Also, congratulations on your new little

angel (I swear that is what all of these children are). I bet she is

beautiful.

My daughter, Alaina, who is now 11 months old was born with

lipomyelomeningocele and tethered cord. She had laminectomy tether cord release

done on 7/29/05 when she was just two months old.

I don't know if you have read any of the past posts, but I did respond to

someone recently and kind of told our whole " story " !!! Take a look to see if

you can find them.

I would love to hear about Jesmarie and how she is doing. Alaina is doing

great. Regardless of anything, she is my sweet little angel and I love her to

death. She amazes me everyday and has taught me so much in just the short time

she has been here. She does not have movement/sensation in her feet, toes, or

ankles. It is also anticipated that she will have bowel and bladder issues.

At 11 months old, she is just starting to crawl...not any distance, but she gets

up on her hands and knees and gets around. She starting sitting up on her own

at about 6 months. We actually take her to the Spina Bifida clinic at

Children's Hospital of Philadelphia (we are from New Jersey) tomorrow. I'm

nervous, but I can't wait to see what the physical therapist has to say...I

personally as her mom think she is doing great!!! lol..

Please, e-mail back with any specific questions or concerns. There are not so

many out there with lipomyelomeningocele so i'm rarely able to chat with anyone.

Alaina didn't have a syrinx? I'm not quite sure what that is?

Hope to hear from you soon!

Tina

Elissa Mercado wrote:

Hi everyone, my name is Elissa. My youngest daughter, Jesmarie (4 months old)

was born with lipomyelomeningocele, tethered cord, and a syrinx. She just had

surgery on March 9th...laminectomy, detether, and draining of the syrinx. I

welcome any and all info, personal experience, whatever anyone has to offer. I

am still fairly new to this experience and am desperate for any help in

understanding what we are facing.

Thanks! Elissa

[Guest guest]

Elissa: Hi, our daughter Norah (2 1/2) had a tethered cord release at

3 months. She was asymptomatic before the surgery. The tether was

actually found via MRI when she was being treated for hip dysplasia.

She has some other midline issues too: heart defect, solitary kidney,

scoliosis, malrotation. She did not have a lipomyelomeningocele or

syrinx. Our neurosurgeon was able to tell us that she should have no

symptoms post operatively other than possible bowel bladder issues.

Norah is doing very well and is up and walking. Her walking was likely

delayed due to prolonged casting for hip dysplasia rather than anything

neurological. Her gait is a bit ackward as one foot turns out, but it

is difficult to say whether that is due to the hip dysplasia or

tether. Our urologist does not want us to start potty training for

several more months b/c Norah has had surgery on her bladder so the

bowel bladder issues remain to unfold. Feel free to ask more questions

or email me privately. We are always cautiously optomistic with

regards to her prognosis even though the neurosurgeon was very

optomistic.

Take Care,

>

> Hi everyone, my name is Elissa. My youngest daughter, Jesmarie (4

months old) was born with lipomyelomeningocele, tethered cord, and a

syrinx. She just had surgery on March 9th...laminectomy, detether, and

draining of the syrinx. I welcome any and all info, personal

experience, whatever anyone has to offer. I am still fairly new to this

experience and am desperate for any help in understanding what we are

facing.

>

> Thanks! Elissa

>

>

>

[Guest guest]

Tina,

We actually went to the spina bifida clinic for the first time this Wednesday.

Unfortunately it just confused things even more. Her nuerosurgeon had said that

her foot being everted (facing out) was related to the lipoma and therefore a

neurological issue. He wanted physical therapy to start immediately and wanted

her to see the orthopoedic surgeon for a brace (afo?). We saw the ortho in the

clinic and he said it is not neurological. He thinks it is just

positional....that's just how her foot was in the womb. He also said physical

therapy will be a waste. I disagree...but what can I do? Anyway, I am trying not

to freak out over little things, but it is hard to know when to push and when

not to. Know what I mean? Grrrr....Anyway, thanks again!

Elissa

tina lesperance wrote:

Elissa,

Of course I don't mind! I would love to help!

Alaina was symptomatic before the surgery... she did not have the movement of

the toes, feet or ankles from the minute she was born. I am starting to see

that Alaina has more issues/damage than most with lipomyelomeningocele.

After the detethering surgery, the only thing that I as a mother think may be

different is her bowel movements and her anus. The nerves that control the

bowel and bladder are in the sacral area which is where the neurosurgeon was

doing the " untethering " . She is constipated a lot and her " hiney hole " (lack of

better term!!lol) seems to be open a lot of the time..not a lot of muscle tone

down there. I believe that she will definitely have issues with bowel/bladder

control...

As far as Alaina's leg movement goes, she kicks like crazy. Though she

definitely has a lot of weakness in her gluts (muscles right below the butt).

This was all before the surgery...

That is great that Jesmarie is doing so well! I would say to take one day at

a time and keep being optomistic...just be sure to always keep in the back of

your mind that there is always a chance of the cord retethering, especially in

lipomyelos because all of the tissue in there makes it easy for the cord to

reattach. This is something that I will have to watch for with Alaina too.

Do you follow up with a clinic or anything??? I take Alaina to a spina bifida

clinic where she is monitored every 6 months by a pediatrician, urologist,

ortho, and physical therapist. By keeping a close eye on things, we are able

to note any " changes " in Alaina's status. Right now that she is a baby, she

can't tell me " ooh, my legs feel weak " or " ooh, my back is starting to hurt me " .

These are all things that could possibly mean a retether....Its basically just

keeping up on things to try to prevent any further damage.

Like you said, all of this not knowing for sure is frustrating and scary. If

it helps you at all, I feel the same way. As time goes on, I try to just be

" guarded " optimistic and know that its all in God (or whoevers) hands with what

is going to happen. I can only love her, take care of her and do the best I

can to make sure that she stays as she is! Worrying all of the time only makes

you crazy! I have learned to just live for the day and enjoy and cherish

everything about Alaina and never take anything for granted!

Hope this helps! Again, anything I can do to help, just ask!

Tina

Elissa Mercado wrote:

Tina,

Thank you for the reply and all of the info! Some questions if you don't mind

...you said Alaina had the surgey at 2 months...was she symptomatic before

the surgery? Which sympotoms? Feeling in feet, toes and ankles then? Could she

move her legs with no problem then? If she did not have symptoms then, did they

start right after surgery? If not, then when? I am trying to guess what and when

we should expect symptoms. So far all she is showing is an everted foot (used to

be drop foot, but now she can flex it and the reflex is normal again). She is

still mostly asymptomatic, but I am scared to be optimistic. I wonder what the

chances are that she will continue to be that way. The syrinx is a fluid filled

sac in the spinal cord. It is where the spinal cord should have ended, were it

not tethered. Her neurosurgeon was actually able to drain the syrinx, even

though he had not planned to do so. I am just so scared to be optimistic even

though so far she looks great. I would

just love to know if everyone looks fine after surgery and then the symptoms

start. Obviously I know that some people are symptomatic before surgery, but I

just wonder what the chances are that she will continue to be asymptomatic. I

know there is no definitive answer and all I can do is look at other people's

stories. So frustrating....thanks again for any and all info

Elissa

tina lesperance wrote:

Hi Elissa and welcome to the group. Also, congratulations on your new little

angel (I swear that is what all of these children are). I bet she is

beautiful.

My daughter, Alaina, who is now 11 months old was born with

lipomyelomeningocele and tethered cord. She had laminectomy tether cord release

done on 7/29/05 when she was just two months old.

I don't know if you have read any of the past posts, but I did respond to

someone recently and kind of told our whole " story " !!! Take a look to see if

you can find them.

I would love to hear about Jesmarie and how she is doing. Alaina is doing

great. Regardless of anything, she is my sweet little angel and I love her to

death. She amazes me everyday and has taught me so much in just the short time

she has been here. She does not have movement/sensation in her feet, toes, or

ankles. It is also anticipated that she will have bowel and bladder issues.

At 11 months old, she is just starting to crawl...not any distance, but she gets

up on her hands and knees and gets around. She starting sitting up on her own

at about 6 months. We actually take her to the Spina Bifida clinic at

Children's Hospital of Philadelphia (we are from New Jersey) tomorrow. I'm

nervous, but I can't wait to see what the physical therapist has to say...I

personally as her mom think she is doing great!!! lol..

Please, e-mail back with any specific questions or concerns. There are not so

many out there with lipomyelomeningocele so i'm rarely able to chat with anyone.

Alaina didn't have a syrinx? I'm not quite sure what that is?

Hope to hear from you soon!

Tina

Elissa Mercado wrote:

Hi everyone, my name is Elissa. My youngest daughter, Jesmarie (4 months old)

was born with lipomyelomeningocele, tethered cord, and a syrinx. She just had

surgery on March 9th...laminectomy, detether, and draining of the syrinx. I

welcome any and all info, personal experience, whatever anyone has to offer. I

am still fairly new to this experience and am desperate for any help in

understanding what we are facing.

Thanks! Elissa

[Guest guest]

,

Thank you for the reply. I am trying to be cautiously optimistic. It's just so

hard when she doesn't have any other symptoms besides the foot eversion (so

far). I look at her and see a perfectly healthy baby and yet I know all of this

stuff is going on inside of her. It's like I am just waiting for more symtoms to

surface and I feel horrible about it. I guess I need to keep taking this one day

at a time

Elissa

wrote:

Elissa: Hi, our daughter Norah (2 1/2) had a tethered cord release at

3 months. She was asymptomatic before the surgery. The tether was

actually found via MRI when she was being treated for hip dysplasia.

She has some other midline issues too: heart defect, solitary kidney,

scoliosis, malrotation. She did not have a lipomyelomeningocele or

syrinx. Our neurosurgeon was able to tell us that she should have no

symptoms post operatively other than possible bowel bladder issues.

Norah is doing very well and is up and walking. Her walking was likely

delayed due to prolonged casting for hip dysplasia rather than anything

neurological. Her gait is a bit ackward as one foot turns out, but it

is difficult to say whether that is due to the hip dysplasia or

tether. Our urologist does not want us to start potty training for

several more months b/c Norah has had surgery on her bladder so the

bowel bladder issues remain to unfold. Feel free to ask more questions

or email me privately. We are always cautiously optomistic with

regards to her prognosis even though the neurosurgeon was very

optomistic.

Take Care,

>

> Hi everyone, my name is Elissa. My youngest daughter, Jesmarie (4

months old) was born with lipomyelomeningocele, tethered cord, and a

syrinx. She just had surgery on March 9th...laminectomy, detether, and

draining of the syrinx. I welcome any and all info, personal

experience, whatever anyone has to offer. I am still fairly new to this

experience and am desperate for any help in understanding what we are

facing.

>

> Thanks! Elissa

>

>

>

[Guest guest]

Elissa,

It may turn out that she does not need physical therapy and it is a

waste - but physical therapy can definitely not do any harm right? So,

when in doubt - why not just do the physical therapy too - unless

money is the problem. The doctors can agree or disagree all they want,

but we have to do all that we can to make sure we give our child the

best chance..

Abby.

> Hi everyone, my name is Elissa. My youngest daughter, Jesmarie (4

months old) was born with lipomyelomeningocele, tethered cord, and a

syrinx. She just had surgery on March 9th...laminectomy, detether, and

draining of the syrinx. I welcome any and all info, personal

experience, whatever anyone has to offer. I am still fairly new to

this experience and am desperate for any help in understanding what we

are facing.

>

> Thanks! Elissa

>

>

>

[Guest guest]

Elissa: Believe me I know just how you feel. We did not even know

about any of Norah's " internal " problems with the exception of her

hip until she was 3 months old. I still sometimes find myself

waiting for the rug to be pulled out from under our feet. Except for

a little gait abnormality, Norah looks perfect from the outside. And,

of course, she is " perfect " in our eyes.

You mentioned in another post the fact that they are recommended

AFOs. Norah wore AFOs for over a year and just got lower DAFOs for

walking. In our case, they haven't " cured " the fact that her foot

rotates outward, but they have helped a lot with strength. She has

also had Early Intervention since age 3 months...PT. We have found

it very helpful. I would push the ortho to allow you to pursue PT.

Most states have some type of Early Intervention program which is

free of charge regardless of income.

Also, has she seen a urologist? Was that recommended after the

detethering?

Take Care,

> >

> > Hi everyone, my name is Elissa. My youngest daughter, Jesmarie (4

> months old) was born with lipomyelomeningocele, tethered cord, and

a

> syrinx. She just had surgery on March 9th...laminectomy, detether,

and

> draining of the syrinx. I welcome any and all info, personal

> experience, whatever anyone has to offer. I am still fairly new to

this

> experience and am desperate for any help in understanding what we

are

> facing.

> >

> > Thanks! Elissa

> >

> >

> >

[Guest guest]

,

I brought her to the pt last week and she gave me some exercises to do with

her at home. I also registered her with early intervention for pt...we are just

waiting for the paperwork to go through. I just find it frustrating for one

specialist to say one thing and another to say another thing. Is it up to me to

decide who is right??? Grrrr....As for urological issues, she has a forceful and

constant stream of urine so they are not concerned at this point. I thought

about pushing to have a test done but her neurosurgeon said it was unecessary at

this point since it would put her through more pain than is needed (since the

test is quite painful, I guess). He said we would re-evaluate as time

progresses. I wonder if I should still push for it? What do you think?

Thanks! Elissa

wrote:

Elissa: Believe me I know just how you feel. We did not even know

about any of Norah's " internal " problems with the exception of her

hip until she was 3 months old. I still sometimes find myself

waiting for the rug to be pulled out from under our feet. Except for

a little gait abnormality, Norah looks perfect from the outside. And,

of course, she is " perfect " in our eyes.

You mentioned in another post the fact that they are recommended

AFOs. Norah wore AFOs for over a year and just got lower DAFOs for

walking. In our case, they haven't " cured " the fact that her foot

rotates outward, but they have helped a lot with strength. She has

also had Early Intervention since age 3 months...PT. We have found

it very helpful. I would push the ortho to allow you to pursue PT.

Most states have some type of Early Intervention program which is

free of charge regardless of income.

Also, has she seen a urologist? Was that recommended after the

detethering?

Take Care,

> >

> > Hi everyone, my name is Elissa. My youngest daughter, Jesmarie (4

> months old) was born with lipomyelomeningocele, tethered cord, and

a

> syrinx. She just had surgery on March 9th...laminectomy, detether,

and

> draining of the syrinx. I welcome any and all info, personal

> experience, whatever anyone has to offer. I am still fairly new to

this

> experience and am desperate for any help in understanding what we

are

> facing.

> >

> > Thanks! Elissa

> >

> >

> >

[Guest guest]

Abby,

Very true! I am starting to feel like I have to decide which drs to listen

to...I wish they would agree on something. I thought that was the point of going

to the sb clinic...but I guess I just have to add caseworker to the list of

other titles I have taken on since my daughter was born (nurse, doctor, physical

therapist, advocate...). Anyway, I have taken her to the pt last week and got a

list of some exercises to do with her and I registered her with early

intervention for a pt to come to the house and work with her. I am still trying

to figure this all out.

Thanks for the reply!

Elissa- mom to Jesmarie (lipomyelomeningocele, tethered cord, syrinx- surgery at

3 months).

subub_98 wrote:

Elissa,

It may turn out that she does not need physical therapy and it is a

waste - but physical therapy can definitely not do any harm right? So,

when in doubt - why not just do the physical therapy too - unless

money is the problem. The doctors can agree or disagree all they want,

but we have to do all that we can to make sure we give our child the

best chance..

Abby.

> Hi everyone, my name is Elissa. My youngest daughter, Jesmarie (4

months old) was born with lipomyelomeningocele, tethered cord, and a

syrinx. She just had surgery on March 9th...laminectomy, detether, and

draining of the syrinx. I welcome any and all info, personal

experience, whatever anyone has to offer. I am still fairly new to

this experience and am desperate for any help in understanding what we

are facing.

>

> Thanks! Elissa

>

>

>

[Guest guest]

Abby,

Very true! I am starting to feel like I have to decide which drs to listen

to...I wish they would agree on something. I thought that was the point of going

to the sb clinic...but I guess I just have to add caseworker to the list of

other titles I have taken on since my daughter was born (nurse, doctor, physical

therapist, advocate...). Anyway, I have taken her to the pt last week and got a

list of some exercises to do with her and I registered her with early

intervention for a pt to come to the house and work with her. I am still trying

to figure this all out.

Thanks for the reply!

Elissa- mom to Jesmarie (lipomyelomeningocele, tethered cord, syrinx- surgery at

3 months).

subub_98 wrote:

Elissa,

It may turn out that she does not need physical therapy and it is a

waste - but physical therapy can definitely not do any harm right? So,

when in doubt - why not just do the physical therapy too - unless

money is the problem. The doctors can agree or disagree all they want,

but we have to do all that we can to make sure we give our child the

best chance..

Abby.

> Hi everyone, my name is Elissa. My youngest daughter, Jesmarie (4

months old) was born with lipomyelomeningocele, tethered cord, and a

syrinx. She just had surgery on March 9th...laminectomy, detether, and

draining of the syrinx. I welcome any and all info, personal

experience, whatever anyone has to offer. I am still fairly new to

this experience and am desperate for any help in understanding what we

are facing.

>

> Thanks! Elissa

>

>

>

[Guest guest]

In a message dated 4/24/2006 1:12:45 PM Eastern Standard Time,

subub_98@... writes:

What do you think? Should I call early intervention? How do you

register with early intervention, and how do you get someone to come home?

Abby, if she is within normal range with her motor skills, and will only

" maybe " be affected and in only one area, I don't know that she would qualify

for early intervention services. My son did qualify, but he had multiple

issues going on that could hamper his development (TC, leg length discrepancy,

anatomical leg issues with nerve issues already documented, VACTERL association,

etc., several surgeries lined up for first year) and he was kinda borderline

at the time on whether he would get in.

Many children develop at different paces. All three of my children varied

vastly in how they developed. My first was content to watch and check things

out and go at a slow steady pace in development, did things right on middle

of schedule, ie. walked right at her first birthday, however she had a large

vocabulary by then... My second did everything gross motor ahead of schedule

(walked at nine months), but did fine motor later and only said six words at a

year old... was my last and he did everything on the later end of the

scale, whether by his nature, or from all he had going on the first year I

don't know. I know the walking was delayed by his issues, between the

imbalance he felt from his leg length size difference, and his clubfoot surgery

at a

year old, but he caught up fast once he got the casts off and got his AFO and

shoelift... and technically 14 months old to walk WAS in the normal range...

It's so hard NOT to worry about our kids, but until you actually see a delay

I wouldn't sweat it too much. If you see an area you can work on, like arm

strength, you can do some play things that can help. For that, more tummy

time, with some fun toys in front of her can encourage development of the

pushing up strength... Lots of kids don't like this when young, though...

didn't before his detethering, but not sure just if because he was young, or

if it hurt, or what...

Connie

Mom to Sara 14, Nicky 7 (GI issues, megacolon), and 5

(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00) perineal fistula

imperforate anus (repaired 5/00), single kidney, PDA (closed on its own),

malformed pelvis and hemisacrum, long segment lumbosacral levoscoliosis with

hemivertebrae, extra left rib, genital anomalies with hypospadius (repairs

9/00,11/00, 5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired

5/01),

tibial torsion and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA,

GI reflux, DGE/gastroparesis, mild swallowing dysphagia, eating issues and the

most beautiful smile ever) _conni60640@..._ (mailto:conni60640@...)

Our website _http://members.tripod.com/conni60640-ivil/_

(http://members.tripod.com/conni60640-ivil/)

VACTERL/VATER support _http://health.groups.yahoo.com/group/VACTERLNetwork/_

(http://health.groups.yahoo.com/group/VACTERLNetwork/)

TC support group _http://health.groups.yahoo.com/group/LMC-TCS/_

(http://health.groups.yahoo.com/group/LMC-TCS/)

Congenital scoliosis support group

_http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_

(http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/)

S. Jersey

[Guest guest]

Elissa,

My daughter is 5.5 months old and will have surgery in the next 6

weeks or so. She seems ok wrt development - but I am not 100% sure.

She is within the normal range however - if she didnt have this

problem I wouldnt have worried about anything. But she is a bit slower

than my first daughter in some things. But then again, she is far

better with fine motor skills than my first dd.

I am not sure whether I should call PT or early intervention or

anything. My husband is terrified of me bringing up a new issue to

worry about. He feels just do the surgery, it will resolve. She has

good leg strenth though - she can stand holding on to something, and

can sit for a few moments. What she does not do much is mini-pushups

(she can do it, but tires easily), and infrequent rollovers. Her foot,

ankle, hip etc seem to be entirely normal.

What do you think? Should I call early intervention? How do you

register with early intervention, and how do you get someone to come home?

Thanks, Abby.

> > Hi everyone, my name is Elissa. My youngest daughter, Jesmarie (4

> months old) was born with lipomyelomeningocele, tethered cord, and a

> syrinx. She just had surgery on March 9th...laminectomy, detether, and

> draining of the syrinx. I welcome any and all info, personal

> experience, whatever anyone has to offer. I am still fairly new to

> this experience and am desperate for any help in understanding what we

> are facing.

> >

> > Thanks! Elissa

> >

> >

> >

[Guest guest]

Abby,

I can tell you what I did. I got a referall from her pcm for physical

therapy...that's where I got exercises to do at home...insurance covered that.

She will go there about once a week. I also registered with early

intervention...here in Maine it is through child development services...and we

got the number from her pcm. But I also had the number because my other

daughter was referred for speech intervention through them. So once that goes

through Jesmarie will also have a pt come to the house and work with her through

early intervention....in addition to the pt she will get at the pt office. Make

sense? I think I confused myself....

Elissa- mom to Jesmarie (4 months- lipomyelomeningocele, tethered cord,

syrinx- surgery at 3 months)

subub_98 wrote:

Elissa,

My daughter is 5.5 months old and will have surgery in the next 6

weeks or so. She seems ok wrt development - but I am not 100% sure.

She is within the normal range however - if she didnt have this

problem I wouldnt have worried about anything. But she is a bit slower

than my first daughter in some things. But then again, she is far

better with fine motor skills than my first dd.

I am not sure whether I should call PT or early intervention or

anything. My husband is terrified of me bringing up a new issue to

worry about. He feels just do the surgery, it will resolve. She has

good leg strenth though - she can stand holding on to something, and

can sit for a few moments. What she does not do much is mini-pushups

(she can do it, but tires easily), and infrequent rollovers. Her foot,

ankle, hip etc seem to be entirely normal.

What do you think? Should I call early intervention? How do you

register with early intervention, and how do you get someone to come home?

Thanks, Abby.

> > Hi everyone, my name is Elissa. My youngest daughter, Jesmarie (4

> months old) was born with lipomyelomeningocele, tethered cord, and a

> syrinx. She just had surgery on March 9th...laminectomy, detether, and

> draining of the syrinx. I welcome any and all info, personal

> experience, whatever anyone has to offer. I am still fairly new to

> this experience and am desperate for any help in understanding what we

> are facing.

> >

> > Thanks! Elissa

> >

> >

> >

[Guest guest]

What Test is it? If there are no specific Symptoms in

that area, I personally, would not do some Tests.

But, that's pretty general as I don't know what kind

of Test you are talking about or what Symptoms you

are talking about.

Me

Nebraska, USA

mymocha@...

o have a test done but her neurosurgeon said it was unecessary at this point

since it would put her through more pain than is needed (since the test is

quite painful, I guess). He said we would re-evaluate as time progresses. I

wonder if I should still push for it? What do you think?

>

[Guest guest]

In a message dated 4/20/2006 1:58:48 PM Eastern Standard Time,

elissamercado@... writes:

Her nuerosurgeon had said that her foot being everted (facing out) was

related to the lipoma and therefore a neurological issue. He wanted physical

therapy to start immediately and wanted her to see the orthopoedic surgeon for

a

brace (afo?). We saw the ortho in the clinic and he said it is not

neurological. He thinks it is just positional....that's just how her foot was

in the

womb. He also said physical therapy will be a waste.

Ah, the chicken or the egg... which caused it... they rarely agree, each doc

has their own take colored by their own specialty You might want to try

some stretching exercises to help get the foot back into a normal position...

just stretch it gently in the opposite direction of where it points now a

couple times a day. My son was born with a club foot and we had to do

this at first to help loosen it up, later he had taping and then AFO and

surgery to straighten it.

You will find, though, that the best physical therapy for the little ones is

the things they do naturally. Standing her up in your lap and holding her

hands, having her stand holding onto furniture (if old enough), cruising and

walking... all will most likely help the foot back to a natural position if it

is like the ortho says, just because of her position in the womb. If it

doesn't, then neuro was right and an AFO will help. One thing you don't have

to

worry about just yet is a time limit, NOT doing anything at this age most

likely won't harm anything and you can keep an eye on it and see what

happens...

Connie

Mom to Sara 14, Nicky 7 (GI issues, megacolon), and 5

(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00) perineal fistula

imperforate anus (repaired 5/00), single kidney, PDA (closed on its own),

malformed pelvis and hemisacrum, long segment lumbosacral levoscoliosis with

hemivertebrae, extra left rib, genital anomalies with hypospadius (repairs

9/00,11/00, 5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired

5/01),

tibial torsion and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA,

GI reflux, DGE/gastroparesis, mild swallowing dysphagia, eating issues and the

most beautiful smile ever) _conni60640@..._ (mailto:conni60640@...)

Our website _http://members.tripod.com/conni60640-ivil/_

(http://members.tripod.com/conni60640-ivil/)

VACTERL/VATER support _http://health.groups.yahoo.com/group/VACTERLNetwork/_

(http://health.groups.yahoo.com/group/VACTERLNetwork/)

TC support group _http://health.groups.yahoo.com/group/LMC-TCS/_

(http://health.groups.yahoo.com/group/LMC-TCS/)

Congenital scoliosis support group

_http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_

(http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/)

S. Jersey

[Guest guest]

Connie,

Thanks! This is all pretty confusing...I guess waiting will have to do for

now.

Elissa

conni60640@... wrote:

In a message dated 4/20/2006 1:58:48 PM Eastern Standard Time,

elissamercado@... writes:

Her nuerosurgeon had said that her foot being everted (facing out) was

related to the lipoma and therefore a neurological issue. He wanted physical

therapy to start immediately and wanted her to see the orthopoedic surgeon for

a

brace (afo?). We saw the ortho in the clinic and he said it is not

neurological. He thinks it is just positional....that's just how her foot was

in the

womb. He also said physical therapy will be a waste.

Ah, the chicken or the egg... which caused it... they rarely agree, each doc

has their own take colored by their own specialty You might want to try

some stretching exercises to help get the foot back into a normal position...

just stretch it gently in the opposite direction of where it points now a

couple times a day. My son was born with a club foot and we had to do

this at first to help loosen it up, later he had taping and then AFO and

surgery to straighten it.

You will find, though, that the best physical therapy for the little ones is

the things they do naturally. Standing her up in your lap and holding her

hands, having her stand holding onto furniture (if old enough), cruising and

walking... all will most likely help the foot back to a natural position if it

is like the ortho says, just because of her position in the womb. If it

doesn't, then neuro was right and an AFO will help. One thing you don't have

to

worry about just yet is a time limit, NOT doing anything at this age most

likely won't harm anything and you can keep an eye on it and see what

happens...

Connie

Mom to Sara 14, Nicky 7 (GI issues, megacolon), and 5

(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00) perineal fistula

imperforate anus (repaired 5/00), single kidney, PDA (closed on its own),

malformed pelvis and hemisacrum, long segment lumbosacral levoscoliosis with

hemivertebrae, extra left rib, genital anomalies with hypospadius (repairs

9/00,11/00, 5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired

5/01),

tibial torsion and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA,

GI reflux, DGE/gastroparesis, mild swallowing dysphagia, eating issues and the

most beautiful smile ever) _conni60640@..._ (mailto:conni60640@...)

Our website _http://members.tripod.com/conni60640-ivil/_

(http://members.tripod.com/conni60640-ivil/)

VACTERL/VATER support _http://health.groups.yahoo.com/group/VACTERLNetwork/_

(http://health.groups.yahoo.com/group/VACTERLNetwork/)

TC support group _http://health.groups.yahoo.com/group/LMC-TCS/_

(http://health.groups.yahoo.com/group/LMC-TCS/)

Congenital scoliosis support group

_http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_

(http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/)

S. Jersey