Re: 6 yr old with tc/leg pain

January 27, 2009

Hi ...It of course could be something else and hopefully is but it

can't hurt to see the NS. Did your son " trip " or did he stumble due to pain

or was it due to weakness or do you know? Is it now resolved? I know ..

probably all of us know!...the concern you are feeling right now. Randee

In a message dated 1/27/2009 11:47:55 A.M. Central Standard Time,

elisaacd@... writes:

Mindy,

My son was detethered when he was 2 and 3 years old. After that we have only

had problems with bladder/bowel issues. He had an MRI last year around this

time but his NS said it didn't looked tethered again at that time. Could it

happen again so fast? It just seemed so sudden.

Thanks,

From: Mindy Brems <_mindybrems@..._ (mailto:mindybrems@...) >

Subject: Re: 6 yr old with tc/leg pain

To: _tetheredspinalcord@tetheredspintet_

(mailto:tetheredspinalcord )

Date: Tuesday, January 27, 2009, 12:26 PM

If you haven't already, I'd be on the phone with the neurosurgeon making an

appointment. I wouldn't try to diagnose this myself--has your son been

dethered? How long ago? When was his last MRI? I think you are right to be

alarmend--always listen to your instincts--they are usually right.

Keep us posted

Mindy

____________ _________ _________ __

From: Nadeau <elisaacdyahoo (DOT) com>

To: tetheredspinalcord@ yahoogroups. com

Sent: Tuesday, January 27, 2009 11:38:56 AM

Subject: 6 yr old with tc/leg pain

Hi,

Many of you know me as the mother of the 6 yr old with lipomylomeningocele ..

Last night we were at my sisters house and he started to complain of pain

behind

his right knee. He also started to walk on his toes. After a while the pain

got

so bad that he started to cry and had to sit down for a while. We came home

and

he went to bed just to wake up this morning with the same pain.

He cried and said that it felt like a bee was stinging the back of his knee..

As we were trying to walk down the driveway to catch the bus, he tripped and

fell three times, once while crossing the road (I was there to pick him

up)..

This all just happened so suddenly. Should I be concerned or is this maybe a

pulled muscle or something?

Any info would help. Thanks,

[Non-text portions of this message have been removed]

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January 27, 2009

I am glad to hear it wasn't weakness that made him fall. Hope it's nothing!

In a message dated 1/27/2009 3:18:06 P.M. Central Standard Time,

elisaacd@... writes:

I asked him and he said that he fell because the pain just made him fall

down.

He is home from school now and seems to be doing a bit better although he is

still limping and walking on his toes on the right leg. Maybe I will try a

heat pad and see if that helps to relieve the pain a bit.

From: Mindy Brems <_mindybrems@ yahoo.min_ (mailto:mindybrems@_mindybrems@>

Subject: Re: 6 yr old with tc/leg pain

To: _tetheredspinalcord @tetheredspintet _

(mailto:tetheredspi(mailto:tetheredspi<WBR>nal

Date: Tuesday, January 27, 2009, 12:26 PM

If you haven't already, I'd be on the phone with the neurosurgeon making an

appointment. I wouldn't try to diagnose this myself--has your son been

dethered? How long ago? When was his last MRI? I think you are right to be

alarmend--always listen to your instincts--they are usually right.

Keep us posted

Mindy

____________ _________ _________ __

From: Nadeau <elisaacdyahoo (DOT) com>

To: tetheredspinalcord@ yahoogroups. com

Sent: Tuesday, January 27, 2009 11:38:56 AM

Subject: 6 yr old with tc/leg pain

Hi,

Many of you know me as the mother of the 6 yr old with lipomylomeningocele

....

Last night we were at my sisters house and he started to complain of pain

behind

his right knee. He also started to walk on his toes. After a while the pain

got

so bad that he started to cry and had to sit down for a while. We came home

and

he went to bed just to wake up this morning with the same pain.

He cried and said that it felt like a bee was stinging the back of his

knee...

As we were trying to walk down the driveway to catch the bus, he tripped and

fell three times, once while crossing the road (I was there to pick him

up)..

This all just happened so suddenly. Should I be concerned or is this maybe a

pulled muscle or something?

Any info would help. Thanks,

[Non-text portions of this message have been removed]

************ **A Good Credit Score is 700 or Above. See yours in just 2 easy

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(_http://pr.atwola._ (http://pr.atwola./) com/promoclk/ 100000075x121585

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January 27, 2009

If you haven't already, I'd be on the phone with the neurosurgeon making an

appointment. I wouldn't try to diagnose this myself--has your son been dethered?

How long ago? When was his last MRI? I think you are right to be

alarmend--always listen to your instincts--they are usually right.

Keep us posted

Mindy

________________________________

To: tetheredspinalcord

Sent: Tuesday, January 27, 2009 11:38:56 AM

Subject: 6 yr old with tc/leg pain

Hi,

Many of you know me as the mother of the 6 yr old with lipomylomeningocele .

Last night we were at my sisters house and he started to complain of pain behind

his right knee. He also started to walk on his toes. After a while the pain got

so bad that he started to cry and had to sit down for a while. We came home and

he went to bed just to wake up this morning with the same pain.

He cried and said that it felt like a bee was stinging the back of his knee.

As we were trying to walk down the driveway to catch the bus, he tripped and

fell three times, once while crossing the road (I was there to pick him up).

This all just happened so suddenly. Should I be concerned or is this maybe a

pulled muscle or something?

Any info would help. Thanks,

January 27, 2009

In a message dated 1/27/2009 11:39:40 A.M. Eastern Standard Time,

elisaacd@... writes:

Last night we were at my sisters house and he started to complain of pain

behind

his right knee. He also started to walk on his toes. After a while the pain

got

so bad that he started to cry and had to sit down for a while. We came home

and

he went to bed just to wake up this morning with the same pain.

It could be from retethering, and it could be possibly from a growth spurt

(or both)... Did he grow taller recently? Sometimes the bones grow faster

than the tendons and that pulls on them, causing pain and burning...

also

had pain in his legs during his retethering, off and on, for three years.

It would mostly start after a growth spurt, last a couple weeks, then calm

down and disappear till another growth spurt. Whenever that happened, I'd call

NS and make an appt and they'd check him out, and we'd have a recheck in a

month to see if he was okay or not by then. He always was, and then we'd aim

for a six month checkup unless he had issues again. We did get an MRI here

and there (at 3yrs old, 5yrs old, 6yrs old) just to keep an eye on things.

For now, I'd keep a log of when the pains happen, how severe, what (if

anything helps) etc, so you can bring them to the NS to document what is going

on. I'd call them and tell them what is going on if it lasts more than a

couple days, or if it happens several times within a week or two. Hopefully,

it's

just from a growth spurt and after a day or two it will be gone for good!

Have you given him any tylenol or ibuprofen to see if it helps? Massaging the

area can help too.

Connie

Mom to Sara 17, Nicky 10 (GI issues, megacolon), and 8

(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00, 8/06) perineal

fistula imperforate anus (repaired 5/00, managed with daily Exlax), single

kidney, PDA (closed on its own), malformed pelvis and hemisacrum, long segment

lumbosacral levoscoliosis with hemivertebrae (spinal fusion T11-sacrum 8/06),

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@...

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/)

Anorectal malformations support - The Pull-Thru Network

_http://www.pullthrunetwork.org/index.php_

(http://www.pullthrunetwork.org/index.php)

S. Jersey

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credit score.

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January 27, 2009

Mindy,

My son was detethered when he was 2 and 3 years old. After that we have only had

problems with bladder/bowel issues. He had an MRI last year around this time but

his NS said it didn't looked tethered again at that time. Could it happen again

so fast? It just seemed so sudden.

Thanks,

Subject: Re: 6 yr old with tc/leg pain

To: tetheredspinalcord

Date: Tuesday, January 27, 2009, 12:26 PM

If you haven't already, I'd be on the phone with the neurosurgeon making an

appointment. I wouldn't try to diagnose this myself--has your son been dethered?

How long ago? When was his last MRI? I think you are right to be

alarmend--always listen to your instincts--they are usually right.

Keep us posted

Mindy

____________ _________ _________ __

From: Nadeau <elisaacdyahoo (DOT) com>

To: tetheredspinalcord@ yahoogroups. com

Sent: Tuesday, January 27, 2009 11:38:56 AM

Subject: 6 yr old with tc/leg pain

Hi,

Many of you know me as the mother of the 6 yr old with lipomylomeningocele ..

Last night we were at my sisters house and he started to complain of pain behind

his right knee. He also started to walk on his toes. After a while the pain got

so bad that he started to cry and had to sit down for a while. We came home and

he went to bed just to wake up this morning with the same pain.

He cried and said that it felt like a bee was stinging the back of his knee..

As we were trying to walk down the driveway to catch the bus, he tripped and

fell three times, once while crossing the road (I was there to pick him up)..

This all just happened so suddenly. Should I be concerned or is this maybe a

pulled muscle or something?

Any info would help. Thanks,

January 27, 2009

I asked him and he said that he fell because the pain just made him fall down.

He is home from school now and seems to be doing a bit better although he is

still limping and walking on his toes on the right leg. Maybe I will try a heat

pad and see if that helps to relieve the pain a bit.

From: Mindy Brems <_mindybrems@ yahoo.min_ (mailto:mindybremsyahoo (DOT) com) >

Subject: Re: 6 yr old with tc/leg pain

To: _tetheredspinalcord @tetheredspintet _

(mailto:tetheredspinalcord@ yahoogroups. com)

Date: Tuesday, January 27, 2009, 12:26 PM

If you haven't already, I'd be on the phone with the neurosurgeon making an

appointment. I wouldn't try to diagnose this myself--has your son been

dethered? How long ago? When was his last MRI? I think you are right to be

alarmend--always listen to your instincts--they are usually right.

Keep us posted

Mindy

____________ _________ _________ __

From: Nadeau <elisaacdyahoo (DOT) com>

To: tetheredspinalcord@ yahoogroups. com

Sent: Tuesday, January 27, 2009 11:38:56 AM

Subject: 6 yr old with tc/leg pain

Hi,

Many of you know me as the mother of the 6 yr old with lipomylomeningocele ...

Last night we were at my sisters house and he started to complain of pain

behind

his right knee. He also started to walk on his toes. After a while the pain

got

so bad that he started to cry and had to sit down for a while. We came home

and

he went to bed just to wake up this morning with the same pain.

He cried and said that it felt like a bee was stinging the back of his knee...

As we were trying to walk down the driveway to catch the bus, he tripped and

fell three times, once while crossing the road (I was there to pick him

up)..

This all just happened so suddenly. Should I be concerned or is this maybe a

pulled muscle or something?

Any info would help. Thanks,

January 27, 2009

I wish I could tell you--I just know that I am now very sensetive to any change

in pain, feeling, bladder habits and call the doc when I have a concern. Even

if we end up with a trip to see him,

I at least know that I did something. I hope he is feeling better since coming

home from school!

Mindy

________________________________

To: tetheredspinalcord

Sent: Tuesday, January 27, 2009 12:46:59 PM

Subject: Re: 6 yr old with tc/leg pain

Mindy,

My son was detethered when he was 2 and 3 years old. After that we have only had

problems with bladder/bowel issues. He had an MRI last year around this time but

his NS said it didn't looked tethered again at that time. Could it happen again

so fast? It just seemed so sudden.

Thanks,

From: Mindy Brems <mindybremsyahoo (DOT) com>