's Story.... Tina and anyone else!

[Guest guest]

Hi Tina,

Ask all the questions you would like, I am here!

was born with just a Sacral dimple, and when we

questioned the doctor about it, he blew us off saying

she looked perfectly normal...so needless to say we

dropped it!! Dumb us! Well you know heinsight is

50/50. Anyways she walked at about 11 months old, very

clumsy! Always falling..

she then was not diagnosed until she was 7 and it was

by a podiatrist, after lots of balllet, and straight

shoes...finally a diagnoses came, but it all started

her right foot was deformed. I then took her to an

Orthopedic who said he was not happy with the diagnois

of a deformed foot, because something was wrong

neurologically. Then we went to see the Neurologist,

and had an MRI and found the tethered cord, but the

NSG we were refered to told us to wait a year and see

what happens that was a BIG mistake, in that year she

drastically got worse. She lost bladder control, and

her left foot was then effected, oh we had the right

foot fixed, that also went goofy! Well that was in

2000. In October of 2001 I took her for a second

opion, and that was with Dr. Mclone, and he couldn't

understand why we waited, and encouraged us to do the

surgery immediately in which we did, but she woke up

post op with terriable nerve pain. Screaming, and

screaming. They seemed dumb founded and had no

explanation for the pain, claiming they never heard

such a thing. Well about 2 months went by and Mclone

wanted to do an exploratory surgery on her, well I

felt we had no choice she was not functionable, so we

proceeded with another surgery, and she did not get

any relief, only a spinal fluid leak. So, of course

there was another surgery, (that brought us to Feb.

2001).

She does walk, but has a hard time, she wears AFO's

and uses her wheelchair at school. But, she suffers

from a lot of pain from the " Nerve " pain. They still

have no reason for the pain, and we no longer see

Mclone, I don't know if something got messed up, or it

was just " her luck of the draw " , but I feel like we

got the run around there. They finally told me after

we went to a new NSG that she had Lypomengicele, and

every case is diffrent, so they have no idea what road

her case will take. She does have neurogenic bowel and

bladder, but has a inter-stim implant so she doesn't

have to Cath.

I know I babbled, but I hope that helped you you can

always e-mail me and ask me anything, we are always

here!

Good luck!

Tommi

's (13) Mom Chicago, IL.

--- tina lesperance wrote:

> Hi Tommi...

>

> Thanks for responding! Alaina is such a great

> name (the name of an angel if you ask me haha!!) I

> remember being in the hospital after giving birth to

> Alaina with tears in my eyes, confused, and frankly

> not knowing what the hell to do, and one of the

> nurses said to me " With a pretty name like Alaina,

> i'm sure she is going to be just fine " ! I always

> remember this when I am feeling down!

>

> Anyhow....YES, I have many questions for you!! I

> don't want to innandate you, so I will start with

> just a few (if ya don't mind)..... Does

> walk and at what age did she start.......what type

> of assistance does she need to walk? Alaina, at

> almost 11 months, is just starting to get into a

> crawling position....she still is not able to stand,

> or bounce etc.. I am told that Alaina's defect was

> at L5 but that she functions at an L3 level... I'm

> not sure where she was tethered? I don't think I

> have ever asked that question

>

> Thank you so much! Hope to chat with you soon..

> Tina (mom to Alaina)

>

> tommi wrote:

> Tina,

> My daughter who is 13 also has

> lipoymengingocele, and has bowel bladder feet

> issues.

> She was tetehered at the L3-L5.

> If you ever have any questions I am here! I also

> have

> a daughter named Alaina who is 7. Ha HA!

> Tommi

> 's 13 Mom Chicago IL.

>

> --- tina lesperance

> wrote:

>

> > Hi Holly and welcome to the group.

> >

> > My name is Tina is my daughter Alaina, who is 11

> > months old, was born with lipomyelomeningocele.

> I

> > am assuming that this is what your daughter has

> been

> > diagnosed with??? I have become " quite the

> expert "

> > in this!! Ha Ha. Most of what I have learned,

> I

> > have learned on my own because there are not too

> > many out there who have lipomyelomeningocele.

> > Myelomeningocele (which is full blown spina

> bifida)

> > is much more common. Both are similar and can

> > share some of the same issues, but lipo is usually

> > " less " serious....

> >

> > Anyhow, my daughter Alaina was born with a large

> > lipoma (fatty mass) just above the " crack of her

> > butt " for lack of a better term. This was

> quite

> > a surprise as after having AFP tests and

> > ultrasounds, etc. I was never told that there was

> a

> > problem. At three days old we followed up with a

> > neurosurgeon who diagnosed lipomyelomeningocele

> and

> > suspected a tethered cord. An MRI done at 1 month

> > old confirmed the tethered cord and we were

> advised

> > that she needed surgery.

> >

> > Alaina had surgery at 2 months old... the

> > procedure was laminectomy with tether cord

> release.

> >

> >

> > Alaina has no feeling or movement in her toes,

> > feet or ankles. She also developed clubbed feet

> > for which she was casted for three weeks....after

> > the 3 weeks of what they call " serial casting " her

> > feet looked normal. It was amazing. It has

> been

> > about 3 months since her casts were taken off.

> They

> > have " clubbed " a tiny bit. We continuously

> stretch

> > them in hopes of keeping them as straight as we

> can.

> > We are told that if they continue to club, she

> may

> > require a surgery, which is apparently pretty

> minor,

> > to " clip " the heel cords....

> >

> > As far as Alaina's kidneys and bladder go, we

> had

> > a kidney ultrasound (to make sure the urine wasn't

> > backing up into them) and a urodynamic test (to

> make

> > sure the bladder was emptying fully) when alaina

> was

> > 6 months old. All of the the testing came back

> > normal at that time so we didn't have to get

> > involved with catherizing her at this time (we

> could

> > end up having to somewhere down the road). She

> has

> > to be tested every 6 months.....we actually go at

> > the end of May to have these tests done again...

> >

> > We live in New Jersey and Alaina is treating at

> > Childrens Hospital of Philadelphia in

> Pennsylvania,

> > so unfortunately I can't be of any help to you

> with

> > recommending a doctor....

> >

> > All of this info that I have given you is very

> > broad and under the assumption that your daughter

> > has " similar " issues. Please, feel free to

> e-mail

> > me back with more specific questions or any

> > questions/concerns that you have....I would love

> to

> > be able to help you and your daughter in any way I

> > can!!! I would love to hear about your

> daughter

> > as well....I bet she is beautiful! I would love

> > to hear how she is doing physically...is she

> > walking, did she crawl, etc???? Alaina at 11

> months

> > old is just starting to attempt to crawl and I am

> > thrilled! I think my daughter is absolutely

> > amazing!!! Above all of the medical mumbo jumbo,

> > she is just a beautiful, loving, strong and

> amazing

> > little girl! I am head over heels in love with

> her

> > and would not trade her for anything in the world.

>

> > In her 11 months, she has taught me and inspired

> me

> > so much I can't even tell you!!!! I'm sure you

> > feel the same about your daughter!

> >

> > Thanks for giving me the opportunity to share

> with

> > you!! Hopefully I hear from you soon!

> >

> > Tina

> >

> >

> >

> > H wrote:

> > My name is Holly and we just found out that our

> 17

> > month old has a tethered cord with a Lypomocele

> > (sp?). This is all new to us so we are excited to

> > learn from the group. Our daughter has a right

> club

> > foot and dimpling on her back. She has no

> feeling

> > in her right club foot after testing and tight

> > muscles in her left big toe. The Ped. Neuro in

> > Chicago said that her case is more complicated and

> > just guessing by the MRI he thinks her bladder is

> > impacted.

> >

> > We are researching doctors for our wonderful

> > daughter. Does anyone know Dr. Moriarty in

> > Louisville? She has an appt. coming up with him.

> >

> >

> > We adopted her from China and had requested a

> > child under 3 with special needs. The orphanage

> was

> > only aware of the club foot and would have

> > considered her " unadoptable " if they had known

> about

> > the tethered cord. We feel so blessed to have her

> > in our family and look forward to learning more

> > about her condition.

> >

> > Thanks for your advice,

> >

> > Holly

> >

> >

> > ---------------------------------

> > Talk is cheap. Use Yahoo! Messenger to make

> > PC-to-Phone calls. Great rates starting at

> > 1 & cent;/min.

> >

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

> > removed]

> >

> >

>

=== message truncated ===

Tommi

's Mom

Chicago, IL. USA

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