Re: Re - tether????

January 11, 2007

Thanks,

No, she is not constipated and they did a urinalysis at the ER.

No urinary tract infection. How long do your severe bouts of pain

last? What causes your pain?

Pam

>

> Hi Pam

>

> My pain, as most people's, wanes and waxes. I have severe bouts

sometimes with cause, other times with no cause.

>

> By any chance is she constipated? Between the stomach ache and

the back pain that would be my first concern with me if I had those

symptoms. (Constipation or a blockage causes those symptoms for

me ... also constipation will cause bladder spasms for me and if

you've ever experienced those you know how painful they can be.)

>

> Also, did they do a urine analysis? That's another thing that

causes your child's symptoms for me - but, I also have to say that

if I get the flu - my pain is always about 3-5 steps higher than

normal. Not sure why the flu or a cold does this to me, but it

does - every time.

>

> Hope these help or at least get you started on figuring out what's

wrong. I can't even imagine how frightening it must be to have a

little one with this condition. So many things can set off the pain

cycle and make it worse, sometimes it's just life.

>

> As far as a retether - not sure - I know some surgeons state the

person will never retether and others, like my nsg, state some do,

some don't. I always retether.

>

> Please let us know how it's going.

>

> Kathy

> Re - tether????

>

> Hello

> I have not posted since last year when my four year old daughter

had

> surgery for her tethered cord. She had it detetherd in two

places

> where it was tethered on one end to a fat tumor. I was told it

will

> grow back. They said she will need the surgery again in the

future.

> all went well.

> Here is my question: On saturday she experienced severe

abdominal

> pain

> for about 2o minutes and then fell asleep.

> Last night she woke at 1:30 Am screaming and crying in pain that

her

> lower back hurt. Again, it lasted about 1/2 an hour.

> She woke with a fever of 102.5 today so I took her to the

emergency

> room. They said all of her pain was probably due to a virus.

> They said they would be concerned more if her pain was constant

and

> not intermmitent. She has a follow up visit with an mri

scheduled in

> two weeks.

> I am skeptical that her severe pain is due to a virus.

> Any thoughts or experiences you can share would be most

appreciated.

>

> Thank you!

>

> Pam

>

January 11, 2007

Hi Pam

I wish I could tell you what always sets them - there seems to be a cycle to

them where no matter how much I don't over-do, it still gets very high - then

there are those times where I do what I can or do what I have to and that will

bring on pain. To be specific though - bending, pushing (ie: vacuum), jumping,

anything really that either puts pressure on my back or stretches my back will

cause problems with pain for me. But to reiterate, there seems to be this inner

cycle where I have no control (and as I said, internal forces will cause

exaggerated pain - constipation, UTI's, the flu, etc.)

Do you know if she's retethered? I believe you said she just had surgery,

correct? If it were my child, knowing what I know about growth spurts and how

they can cause damage to someone with a tether (and can stunt growth in some

cases according to my nsg), I would want to know if she/he were retethered, no

matter how many promises my nsg gave me that it wouldn't happen. It would be an

inexpensive insurance policy to know what you may/may not be up against as your

child gets older.

Kathy

Re - tether????

>

> Hello

> I have not posted since last year when my four year old daughter

had

> surgery for her tethered cord. She had it detetherd in two

places

> where it was tethered on one end to a fat tumor. I was told it

will

> grow back. They said she will need the surgery again in the

future.

> all went well.

> Here is my question: On saturday she experienced severe

abdominal

> pain

> for about 2o minutes and then fell asleep.

> Last night she woke at 1:30 Am screaming and crying in pain that

her

> lower back hurt. Again, it lasted about 1/2 an hour.

> She woke with a fever of 102.5 today so I took her to the

emergency

> room. They said all of her pain was probably due to a virus.

> They said they would be concerned more if her pain was constant

and

> not intermmitent. She has a follow up visit with an mri

scheduled in

> two weeks.

> I am skeptical that her severe pain is due to a virus.

> Any thoughts or experiences you can share would be most

appreciated.

>

> Thank you!

>

> Pam

>

January 11, 2007

Hi Kathy,

She had the surgey a year ago and at the time he said she will most

certainly retetehr. I am concenrd that she is because of the severe

albeit short lived pain she is experiencing. They told me today it

is a virus but I know better.When you need a detether do you

experince such pains? Do you have spina bifida? She has SBO but she

has a split cord and very abnormal spinal anatomy.

Thank you so much,

Pam

> Hi Pam

>

> I wish I could tell you what always sets them - there seems to be

a cycle to them where no matter how much I don't over-do, it still

gets very high - then there are those times where I do what I can or

do what I have to and that will bring on pain. To be specific

though - bending, pushing (ie: vacuum), jumping, anything really

that either puts pressure on my back or stretches my back will cause

problems with pain for me. But to reiterate, there seems to be this

inner cycle where I have no control (and as I said, internal forces

will cause exaggerated pain - constipation, UTI's, the flu, etc.)

>

> Do you know if she's retethered? I believe you said she just had

surgery, correct? If it were my child, knowing what I know about

growth spurts and how they can cause damage to someone with a tether

(and can stunt growth in some cases according to my nsg), I would

want to know if she/he were retethered, no matter how many promises

my nsg gave me that it wouldn't happen. It would be an inexpensive

insurance policy to know what you may/may not be up against as your

child gets older.

>

> Kathy

> Re - tether????

> >

> > Hello

> > I have not posted since last year when my four year old

daughter

> had

> > surgery for her tethered cord. She had it detetherd in two

> places

> > where it was tethered on one end to a fat tumor. I was told it

> will

> > grow back. They said she will need the surgery again in the

> future.

> > all went well.

> > Here is my question: On saturday she experienced severe

> abdominal

> > pain

> > for about 2o minutes and then fell asleep.

> > Last night she woke at 1:30 Am screaming and crying in pain

that

> her

> > lower back hurt. Again, it lasted about 1/2 an hour.

> > She woke with a fever of 102.5 today so I took her to the

> emergency

> > room. They said all of her pain was probably due to a virus.

> > They said they would be concerned more if her pain was

constant

> and

> > not intermmitent. She has a follow up visit with an mri

> scheduled in

> > two weeks.

> > I am skeptical that her severe pain is due to a virus.

> > Any thoughts or experiences you can share would be most

> appreciated.

> >

> > Thank you!

> >

> > Pam

> >

January 11, 2007

Hi Kathy

Can you tell me how to do this babinsk check??

Thank you

Pam

kmoulton@...> wrote:

>

> Hi Pam

>

> I have lipomeningocele and a Chiari malformation. I've had five

untetherings since 1997. Pain can be a sign of a retether, but

usually you would see other issues also (bladder/bowel, muscle

wasting, weakness, etc.) Do you know what a Babinski sign is? It's

very easy to check to see if your child has this and if they are

over a certain age, it should not be present (can't think of the age

cut-off, but I think it's something like toddler/infant age.) If

you do a quick check for Babinski, you can see what it is and how to

check for it. If your child has a positive Babinski and is over the

age for a positive reaction, then that will be a sign for you to get

things rechecked (always one of the first things they checked on me

when deciding if surgery was needed.) Reflexes may also have

changed...there are a lot of issues/factors that can be involved

when a retether is causing problems.

>

> Kathy

> Re - tether????

> > >

> > > Hello

> > > I have not posted since last year when my four year old

> daughter

> > had

> > > surgery for her tethered cord. She had it detetherd in two

> > places

> > > where it was tethered on one end to a fat tumor. I was told

it

> > will

> > > grow back. They said she will need the surgery again in the

> > future.

> > > all went well.

> > > Here is my question: On saturday she experienced severe

> > abdominal

> > > pain

> > > for about 2o minutes and then fell asleep.

> > > Last night she woke at 1:30 Am screaming and crying in pain

> that

> > her

> > > lower back hurt. Again, it lasted about 1/2 an hour.

> > > She woke with a fever of 102.5 today so I took her to the

> > emergency

> > > room. They said all of her pain was probably due to a virus.

> > > They said they would be concerned more if her pain was

> constant

> > and

> > > not intermmitent. She has a follow up visit with an mri

> > scheduled in

> > > two weeks.

> > > I am skeptical that her severe pain is due to a virus.

> > > Any thoughts or experiences you can share would be most

> > appreciated.

> > >

> > > Thank you!

> > >

> > > Pam

> > >

January 11, 2007

Sorry, I really don't feel qualified to tell you how to do it. I can do it on

myself and on my kids, but to tell someone else - I just don't feel that I know

enough about it. Below are two sites, one with a good picture (drawing) of

someone testing for a positive Babinski. Let me know how it goes.

Kathy

http://www.nlm.nih.gov/medlineplus/ency/article/003294.htm

http://en.wikipedia.org/wiki/Plantar_reflex

Re - tether????

> > >

> > > Hello

> > > I have not posted since last year when my four year old

> daughter

> > had

> > > surgery for her tethered cord. She had it detetherd in two

> > places

> > > where it was tethered on one end to a fat tumor. I was told

it

> > will

> > > grow back. They said she will need the surgery again in the

> > future.

> > > all went well.

> > > Here is my question: On saturday she experienced severe

> > abdominal

> > > pain

> > > for about 2o minutes and then fell asleep.

> > > Last night she woke at 1:30 Am screaming and crying in pain

> that

> > her

> > > lower back hurt. Again, it lasted about 1/2 an hour.

> > > She woke with a fever of 102.5 today so I took her to the

> > emergency

> > > room. They said all of her pain was probably due to a virus.

> > > They said they would be concerned more if her pain was

> constant

> > and

> > > not intermmitent. She has a follow up visit with an mri

> > scheduled in

> > > two weeks.

> > > I am skeptical that her severe pain is due to a virus.

> > > Any thoughts or experiences you can share would be most

> > appreciated.

> > >

> > > Thank you!

> > >

> > > Pam

> > >

January 11, 2007

I can! You take a key and scrape it along the bottom

of the foot (not really hard, but not like you're

tickling it either). The toes should turn under, like

grabbing something with them. With the Babinski sign,

the toes splay out and the big toe points up.

This is supposedly normal in kids under 2. After two,

everyone's toes should curl under.

http://www.nlm.nih.gov/medlineplus/ency/article/003294.htm

--- pam3232785 wrote:

>

> Hi Kathy

>

> Can you tell me how to do this babinsk check??

>

> Thank you

>

> Pam

>

> kmoulton@...> wrote:

> >

> > Hi Pam

> >

> > I have lipomeningocele and a Chiari malformation.

> I've had five

> untetherings since 1997. Pain can be a sign of a

> retether, but

> usually you would see other issues also

> (bladder/bowel, muscle

> wasting, weakness, etc.) Do you know what a

> Babinski sign is? It's

> very easy to check to see if your child has this and

> if they are

> over a certain age, it should not be present (can't

> think of the age

> cut-off, but I think it's something like

> toddler/infant age.) If

> you do a quick check for Babinski, you can see what

> it is and how to

> check for it. If your child has a positive Babinski

> and is over the

> age for a positive reaction, then that will be a

> sign for you to get

> things rechecked (always one of the first things

> they checked on me

> when deciding if surgery was needed.) Reflexes may

> also have

> changed...there are a lot of issues/factors that can

> be involved

> when a retether is causing problems.

> >

> > Kathy

> > Re - tether????

> > > >

> > > > Hello

> > > > I have not posted since last year when my

> four year old

> > daughter

> > > had

> > > > surgery for her tethered cord. She had it

> detetherd in two

> > > places

> > > > where it was tethered on one end to a fat

> tumor. I was told

> it

> > > will

> > > > grow back. They said she will need the

> surgery again in the

> > > future.

> > > > all went well.

> > > > Here is my question: On saturday she

> experienced severe

> > > abdominal

> > > > pain

> > > > for about 2o minutes and then fell asleep.

> > > > Last night she woke at 1:30 Am screaming and

> crying in pain

> > that

> > > her

> > > > lower back hurt. Again, it lasted about 1/2

> an hour.

> > > > She woke with a fever of 102.5 today so I

> took her to the

> > > emergency

> > > > room. They said all of her pain was probably

> due to a virus.

> > > > They said they would be concerned more if

> her pain was

> > constant

> > > and

> > > > not intermmitent. She has a follow up visit

> with an mri

> > > scheduled in

> > > > two weeks.

> > > > I am skeptical that her severe pain is due

> to a virus.

> > > > Any thoughts or experiences you can share

> would be most

> > > appreciated.

> > > >

> > > > Thank you!

> > > >

> > > > Pam

> > > >

> > > > [Non-text portions of this message have been

> removed]

> > > >

> > >

> > > [Non-text portions of this message have been

> removed]

> > >

> >

> > [Non-text portions of this message have been

> removed]

> >

>

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January 11, 2007

Thanks!!!!

>

> I can! You take a key and scrape it along the bottom

> of the foot (not really hard, but not like you're

> tickling it either). The toes should turn under, like

> grabbing something with them. With the Babinski sign,

> the toes splay out and the big toe points up.

>

January 11, 2007

Thanks Kathy

I could not find it anywhere online? I googled it.

Pam

> Hey and Pam,

>

> I think your supposed to be careful for direction - my doctors

always used a spoon...we go (and the doctors) from the inside of the

bottom of the foot (the part closest to the other leg), starting

where at the area of the foot that doesn't normally touch the

ground - in front of the heel, going towards the big toe. See -

this is why I thought it was better she read exactly how to do it

<G> Also, it helps to see what the toes " shouldn't " do for a

negative (what you want) Babinski.

>

> I still have a positive Babinski - it went away after two or three

of the surgeries, but came back a couple of years ago - but at this