Re: Leg pains at night, bedwetting, clumsiness

[Guest guest]

Hi ,

You are right to approach this with concern and follow your intuition.... I think that is how most of us got our kiddos the scoli casting to begin with.... Because too few docs, including ped. orthos, knew too little about our kids and their PIS and our instincts told us to keep searching. Noelle sees an excellent neurologist and geneticist which are the docs that I would recommend for your child. My advise would be to find the best ones in your area and begin with the neurologist who will advise you whether or not you also need a geneticist. Initially, it WILL open a can of worms and it will feel like the sky is falling, but together with a good doc you can decide what further tests may be needed and rule out or rule in possibilities that will educate you and give you some answers and resolutions. Please let me know what you find out and big hugs to you....

- Noelle's mommy, 4 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and went into cast 9Back in brace at 8 degrees supine, 13 standing! reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

From: Jim and A <dalerocks08@...>Subject: Leg pains at night, bedwetting, clumsinessinfantile scoliosis treatment Date: Friday, April 22, 2011, 2:01 AM

I have been a way from here for a while now since my DD (almost 6) Evanlee had such success with casting. A little history: she is a twin, had a single umbilical artery, diagnosed at 4 months with idiopathic infantile scoliosis. She was in a series of 3 casts followed up with 2 braces. When she was an infant we always were concerned with her legs always turning purple. Doctors were not concerned. Her scoliosis treatment was very successful and she was done with treatments after a year and a half. For the past 3 years we have complained that she is always falling, wakes in the middle of the night at least 3x a week with pain in the front of her right leg (shin area). We were also concerned that she didn't really feel pain like she should (she was dropped on her head on a concrete driveway from her brother's shoulders and didn't shed a tear; she doesn't even flinch when gets shots, etc.)and she still has problems with bedwetting (only when asleep).

Now at her last checkup her spine has begun to curve again, however only slightly. Due to these issues her Ortho did finally have an MRI done and everything has come back ok. So my question now is, has anyone else had any of these issues with their little ones? I am continually told to chalk it up as growing pains, clumsiness, spoiled, etc., but my motherly intuition believes there is something more. Other than her ortho or ped, what other type of specialist should I try to get her into? Any help would be greatly appreciated.(mother of Evanlee)

[Guest guest]

,So sorry Evanlee is still having some struggles. All I can say is I would highly recommend getting a referral to a pediatric neurosurgeon for evaluation and to look at her MRI results. To me, and I am definitely no pro or a doctor, but it sounds to me along the lines of a tethered cord? I am one of those if I don't like the answer I'm getting, I keep searching. It doesn't seem reasonable that her doctor's would overlook such obvious symptoms of something being wrong.I hope you find something to help! JaneGrace, 4 1/2 years, moderate omphalocele fully repaired, congenital scoliosis with hemi vert (removed 9/09 followed by a series of casts/braces, goes in for cast #7

on 4/28) and bladder issues (may be resolved).From: Jim and A <dalerocks08@...>infantile scoliosis treatment Sent: Thu, April 21, 2011 7:01:32 PMSubject: Leg pains at night, bedwetting, clumsiness

I have been a way from here for a while now since my DD (almost 6) Evanlee had such success with casting. A little history: she is a twin, had a single umbilical artery, diagnosed at 4 months with idiopathic infantile scoliosis. She was in a series of 3 casts followed up with 2 braces. When she was an infant we always were concerned with her legs always turning purple. Doctors were not concerned. Her scoliosis treatment was very successful and she was done with treatments after a year and a half. For the past 3 years we have complained that she is always falling, wakes in the middle of the night at least 3x a week with pain in the front of her right leg (shin area). We were also concerned that she didn't really feel pain like she should (she was dropped on her head on a concrete driveway from her brother's shoulders and didn't shed a tear; she doesn't even flinch when gets shots, etc.)and she still has problems with bedwetting (only when

asleep). Now at her last checkup her spine has begun to curve again, however only slightly. Due to these issues her Ortho did finally have an MRI done and everything has come back ok. So my question now is, has anyone else had any of these issues with their little ones? I am continually told to chalk it up as growing pains, clumsiness, spoiled, etc., but my motherly intuition believes there is something more. Other than her ortho or ped, what other type of specialist should I try to get her into? Any help would be greatly appreciated.

(mother of Evanlee)

[Guest guest]

Wow! Evanlee is almost 6 yrs old! Its great to hear that her spine is

good according to the MRI....But, I agree 100% w/ all mums who replied.

Follow your gut momma. Its almost always 100% correct. Perhaps, get a

2nd or 3rd opinion on the MRI? Great to hear an update on Evan Lee.

How's her sis?

Sincerely,

HRH

> I have been a way from here for a while now since my DD (almost 6) Evanlee

> had such success with casting. A little history: she is a twin, had a

> single umbilical artery, diagnosed at 4 months with idiopathic infantile

> scoliosis. She was in a series of 3 casts followed up with 2 braces. When

> she was an infant we always were concerned with her legs always turning

> purple. Doctors were not concerned. Her scoliosis treatment was very

> successful and she was done with treatments after a year and a half. For

> the past 3 years we have complained that she is always falling, wakes in

> the middle of the night at least 3x a week with pain in the front of her

> right leg (shin area). We were also concerned that she didn't really feel

> pain like she should (she was dropped on her head on a concrete driveway

> from her brother's shoulders and didn't shed a tear; she doesn't even

> flinch when gets shots, etc.)and she still has problems with bedwetting

> (only when asleep). Now at her last checkup her spine has begun to curve

> again, however only slightly. Due to these issues her Ortho did finally

> have an MRI done and everything has come back ok. So my question now is,

> has anyone else had any of these issues with their little ones? I am

> continually told to chalk it up as growing pains, clumsiness, spoiled,

> etc., but my motherly intuition believes there is something more. Other

> than her ortho or ped, what other type of specialist should I try to get

> her into? Any help would be greatly appreciated.

>

>

> (mother of Evanlee)

>

>

[Guest guest]

When they did the MRI did they include the brain? This sounds a lot like

Chiari symptoms which can only be diagnosed with a brain and spine MRI combined.

Just a thought if they did not include the brain. Best of luck.

Rochelle mom to Devyn 5 1/2yrs infantile scoliosis and chiari1

>

> I have been a way from here for a while now since my DD (almost 6) Evanlee had

such success with casting. A little history: she is a twin, had a single

umbilical artery, diagnosed at 4 months with idiopathic infantile scoliosis. She

was in a series of 3 casts followed up with 2 braces. When she was an infant we

always were concerned with her legs always turning purple. Doctors were not

concerned. Her scoliosis treatment was very successful and she was done with

treatments after a year and a half. For the past 3 years we have complained that

she is always falling, wakes in the middle of the night at least 3x a week with

pain in the front of her right leg (shin area). We were also concerned that she

didn't really feel pain like she should (she was dropped on her head on a

concrete driveway from her brother's shoulders and didn't shed a tear; she

doesn't even flinch when gets shots, etc.)and she still has problems with

bedwetting (only when asleep). Now at her last checkup her spine has begun to

curve again, however only slightly. Due to these issues her Ortho did finally

have an MRI done and everything has come back ok. So my question now is, has

anyone else had any of these issues with their little ones? I am continually

told to chalk it up as growing pains, clumsiness, spoiled, etc., but my motherly

intuition believes there is something more. Other than her ortho or ped, what

other type of specialist should I try to get her into? Any help would be greatly

appreciated.

>

>

> (mother of Evanlee)

>

[Guest guest]

Hi,

We noticed your post because our 3 year old daughter (who will have her fifth

cast put on this Tuesday in Erie) has had legs that have turned purple since she

was born and has also been plagued by waking up with leg pains. She isn't night

toilet trained yet, so can't comment on that part, but we have always thought

something was odd--although no doctor has put it down to anything and none have

been worried. Her MRI was not entirely clear--she has a questionable tetherod

spinal cord (no actual evidence visible of any tethering, but her spinal cord

ends lower than it should, leading a few docs. to speculate there is a small

chance--but nothing conclusive). We have wondered if there is some type of link

between the leg issues and scoliosis...

Liz (mother of Olivia)

>

> Wow! Evanlee is almost 6 yrs old! Its great to hear that her spine is

> good according to the MRI....But, I agree 100% w/ all mums who replied.

> Follow your gut momma. Its almost always 100% correct. Perhaps, get a

> 2nd or 3rd opinion on the MRI? Great to hear an update on Evan Lee.

> How's her sis?

> Sincerely,

>

> HRH

>

> > I have been a way from here for a while now since my DD (almost 6) Evanlee

> > had such success with casting. A little history: she is a twin, had a

> > single umbilical artery, diagnosed at 4 months with idiopathic infantile

> > scoliosis. She was in a series of 3 casts followed up with 2 braces. When

> > she was an infant we always were concerned with her legs always turning

> > purple. Doctors were not concerned. Her scoliosis treatment was very

> > successful and she was done with treatments after a year and a half. For

> > the past 3 years we have complained that she is always falling, wakes in

> > the middle of the night at least 3x a week with pain in the front of her

> > right leg (shin area). We were also concerned that she didn't really feel

> > pain like she should (she was dropped on her head on a concrete driveway

> > from her brother's shoulders and didn't shed a tear; she doesn't even

> > flinch when gets shots, etc.)and she still has problems with bedwetting

> > (only when asleep). Now at her last checkup her spine has begun to curve

> > again, however only slightly. Due to these issues her Ortho did finally

> > have an MRI done and everything has come back ok. So my question now is,

> > has anyone else had any of these issues with their little ones? I am

> > continually told to chalk it up as growing pains, clumsiness, spoiled,

> > etc., but my motherly intuition believes there is something more. Other

> > than her ortho or ped, what other type of specialist should I try to get

> > her into? Any help would be greatly appreciated.

> >

> >

> > (mother of Evanlee)

> >

> >

>