Huge Archive

HI! Urodynamics are tests done on the kidneys & bladder. One test
Anna has done is a renal ultrasound. Its an ultrasound done to take
pictures of her kidneys & bladder in relation to the other internal
organs (size & to see if they look healthy). Another test she has
done is a VCUG. They fill up her bladder with the use of a catheter.
Then they take pictures as they drain the bladder to make sure none
of the liquid refluxes back up into the kidneys. There may be more
tests involved but those are the 2 she gets done every year.
Diane (mom of 2: Ethan & Anna)
--- In Livingwithspinabifida@egroups.com, "Stacy Jaeger"

Brandy,
I don't have the same problems you have, we've known about Travis' SB as
soon as he was born. But now he is 4 and all of his friends are wearing
'big boy pants' and he's still in diapers. He gets so upset and cries and
asks me when he's gonna be able to wear them. I feel so bad. I just tell
him that he is different than his friends, that it makes him special. That
God has a special plan for him later that we don't know yet. I know, it's a
lot for a 4 year old, but he is so smart. I just tell him that I don't know
why he can't pee like the rest of his friends, but that we'll do what we
have to do. I told him that if anyone makes fun of him to tell them that
his mom said not to, that it's not nice or polite and they have bad manners.
I still find myself getting angry in having to deal with some of this, but
we go on.
By the way, Travis is S3 and has no visible signs/symptoms of SB. We only
have bowel and bladder problems.
Stacy

I would like to start by saying how happy that I am that I finally
found a group. I know no one who has SB or who understands what we
are going through. I'm not even sure I understand! My son (Tyler)
was born 2-4-92, When he was born he had a dimple on his back, the
doctor told me to put first aid cream on it and it would go away.
Well it didn't! So another doc. sent me to Des Miones,Iowa to see
someone, He told me that Tyler would need surgery because he had
fatty tissue on his spinal cord. After surgery he told me that he
was fine and that we would not need to see him again unles Tyler was
having problems potty training. 1 1/2 years went by and Tyler still
wasn't potty trained. So we called down to his office and they said
that he no longer worked there and that they had no record of Tyler.
So we wnet to another doc. and tried to explain what was wrong with
Ty, NO one believe me. (I guess the scar on his back was not proof
enough that there was something wrong!) So we went to doc. after
doc. and they all told me that Ty was just stubborn and that there
was nothing wrong with him. In kindergarton the school nurse refered
us to the Child Health and Specialty clinic in Mason City, Iowa. and
there the Doc to one look at Ty and sent us to Iowa City. This was in
1998. Tyler is now being seen on a regular basis by 4 doctors. But
it was just this summer that I learned that Tyler has SB. No one
ever put that name to it, We allways thought that Tyler would get
past this and be able to live a normal life. So much has changed!!!
I t was allways Tyler dream to play NFL, but that is not going to
happen. Up until this summer we did not know that he had
restrictions. The doc. assumed that since Tyler was this old we
should have already know everything that was going on. We didn't! I
feel so awful because I didn't know. What I want to know is how do I
get past all the anger I'm feeling and How do I help Tyler get pasted
all the anger he is feeling, so much has changed so fast.
Any advice will be a great help.
Brandy

Ok, I received the magic bullets in the mail yesterday. So I guess we're ready to get started. The uro didn't really tell us too much at clinic, but he said I could call his nurse if I had any questions. Before I make a long distance call, I figured I would ask here first. What should we do first? to get started? Just start the suppositories? I'm really new to this, need some advice.

Stacy

Ok, this is something we haven't experienced, what is it? When is it done? Why is it done? What does it show?

Stacy

Marybeth

I just wanted to let you know that the risks of Katherine getting worse without having the Detethering Surgery is greater than if she has it. I know how hard the decision is to make as we have just been there, we were told to imagine looking into the eyes of you ten year old and saying "I'm sorry, maybe if we had done the operation, you could walk" or "at least we tried everything". In my heart, Rhiann was not going to have the surgery, but I was too scared to run the risk of waiting any longer and causing further damage.

The younger the child is, the better off you are, as movement is a big issue after the operation, and a six week old has little movement compared with a 22 month old. The only draw back with a young baby is protecting the wound from pooey nappies, but experienced nurses can show you all kinds of tricks to compensate for that.

If you have any further questions, ask away.

Sue

Marybeth,

From what I've read, the operation for tethered cord surgery should take place prior to age two. Although I have read where some have had this surgery at later dates. But the articles I've read say that if the child has the surgery prior to age 2, they will not get any worse than what they are now.
To be honest with you, I think there is still so much we do not know about sb and that bothers me. I'm a 46 year old male with lipomeningocele, one of the three types of spina bifida. I also have a tethered cord and a slew of other problems, but it is too late for me as I have too much scar tissue from surgeries, and the nerves from the cord going out to the body including the spinal cord, is inside and around the lipoma tumor. So surgery is out of the question for me.
I hope and pray for the best for your son Andrew.

Chip

Dear sus,
Can you please resend you e-mail without that funny background. It was
pretty hard to read and I would really like to read it.
Thanks.
God Bless!!

Hello everyone. I wanted to introduce myself and my family to you.
My husband Scott and I have a 19 month old son Andrew and a 6 week
old daughter named Katherine.
Katherine has Spina Bifida (L3)which was repaired in-utero on 4/28/00
at 22 1/2 weeks gestation. She was born on 7/27/00 at 35 1/2 weeks.
So far Katherine has not been shunted.
Her initial urodynamics test showed she voids at low pressures and,
therefore, we do not cath her.
The urodynamics test also showed some level of continued nerve
degeneration that the Dr. thought meant tethered cord. (Is it
possible at 6 weeks?!?! Will an MRI show for sure?? Will she lose
the function she has now if we wait to operate?? Should we operate??
If so, when?? Those are all the questions we currently struggle with
and we're learning that the Doctors don't tell you what you should
do!)
We are working with PT twice a week and have been seeing great
strides in her flexibility and knee movement.
Katherine is a beautiful baby girl and is a joy in our lives. I try
to take one day at a time and not look too far down the road; it is
hard because I know we'll have a lifetime of challenges with her
condition.
Reading what you all have been discussing has been eye-opening and,
at times, scary. However I am encouraged when I see how positive
your outlooks are. I hope to gain strenth as time goes on...I think
this group will help me.
I look forward to joining in on the discussions as my knowledge base
grows and I can contribute something positive. Until then, I'll
continue learning from you all!

Hi all

Thankyou for the lovely welcomes. I only gave a very breif description of Rhiann in the introduction so that you would know my reasons for joining the group.

Rhiann is now 26 months old and had an operation for Tethered Cord Syndrome back in May (four months ago). Until the surgery, we didn't know about the Spina Bifida Occulta, they found that when they went in. The range of affected verterbrae is from L2 to S1, so a large area. She was tethered in about 4 places and also has a syrinx or split in the cord causing 2 cords for a short period.

Rhiann's sympton have only been minor compared to what could occur (and the doctors claim wouldoccur, no doubt) She has a clawed left foot and walking problems, we are actually heading to the Physiotherapist today as her gait has gotten worse over the last month, and next month is having bladder tests to see how much control she has. At this age it is hard to tell, but she already has full knowledge of bowel movements and tells us when she is doing it but to date, has never acknowledged bladder in any form. Fingers crossed it is only a delay and not a sensation problem.

Anyway thats enough of Rhiann, please all tell me your stories, as every bit if information helps. It is because of what I learnt on a site for TCS that gave me the strength to get through Rhiann's operation.

I have included a photo of my "bikie babe" though it is about 6 months old.

Bye and thinking of you all.

Sue

[INLINE]

Danell,

I just realized Kayla and I share basically the same thing. DUH!!! We take the same tests. Have you been to my web site and seen my MRI's? I really feel for you and your daughter. I know what she is going through except they have done far more for her than what I had done to me when I was 4.
The doctor just took out the "lump" on my back as far as he could see back in the early 1950's. It was just the family doctor and no back doctor! They didn't know then what it was. Just a fatty tissue thing to them. I didn't have many urinating or bowel problems when I was smaller. A few times, but not many. That didn't happen until later in life.
Kayla is one reason I'm fighting so hard to get adults to send in their information so we can get this information to millions via the Discovery Channel. So far, I'm getting no help from the adults here. WHY? We just want your story. It can be anonymous if you wish or you can have your mug on tv.
I realize it may be too late for a 46 year old man to get some type of cure for, but I'm doing this so the kids of today may get that cure! We have to keep fighting as our priorities in the USA today aren't where they should be. We need to find the cure. It's out there waiting for someone to grab and help millions. But for some reason, people just don't know about this until it happens to someone in their family.
I think of Kayla often. In fact, I think of the thousands of Kaylas around the world that no one is doing anything for. I've gone through it and am still going through it. I'm still changing everyday. This weekend, the pain was awful. Debi, my wife, had to take care of me from Sat. eve until late into the night last night. It was awful. Dear God, I don't want Kayla to go through this. She doesn't have to if we can find the cure. I don't want to find just the next pill for the pain or the pill to help with urination. I want the cure. It is out there.

So sorry for getting on my soap box again. I'm laying here in bed typing this with tears streaming down my face as we can't seem to get enough people to take a look at this problem.

Love to you and yours, Chip

Sue,

I'm a 46 year old male with lipomeningocele (sometimes called Occulta) with a tethered cord and a slew of other things. Instead of boring the many others here again, please go to my main web site and there is info on me and what has happened to me. There is also a wonderful links page that the research has already been done for you. Just click on the web site that interests you the most.
I have a bio that explains what has occurred to me since I was born and I'm still in a state of change. The wonderful thing about your daughter is that there is hope for her since she was found to have this prior to 2 years of age. I think the doctors can stop many of the problems I've endured and will endure as this is progressive.

http://www.geocities.com/HotSprings/Retreat/2275/index.html

Welcome to the group and I'll pray for you and your family tonight. Please let me know of her progress. It's important to me as I'm really working hard to try and spread the word about this condition and I'm lobbying hard for a cure for this condition.

Love to you and yours,

Chip aka George

[LINK]

Sue Neely wrote:

Hi

My name is Sue and I have joined this list in the hope of gaining information on Spina Bifida, Spina Bifida Occulta and Tethered Cord Syndrome.

My 2 year old daughter Rhiann has both SBO and TCS, the TCS having been operated on May 2000.

She recently started showing further deterioration again, so I need to know the problems that may come up, especially being only 3 months after the operation.

Looking forwards to learning all i can

Sue

Hello sue! I am Danell. My daughter Kayla has sb and tethered cord
syndrome. She was born with the lipoma on her back and had surgery at 8 wks
to detether. She is four yrs. now and just starting to experience problems
with frequent wetting and occasional bowel accidents. We just completed a
set of tests...MRI, urodynamics, and today will get another Ultrasound. I
get test results today. I am supposed to find out wether another surgery is
necessary and what is wrong with her bladder. So far I know she has a high
pressure bladder and started on ditropan a few days ago. That is just what
the nurse said over the phone so we will know more tonight. How old is your
child? I like to talk with other moms who have child with lmc and tcs.
Hang in there and wish us luck!
Danell

Please Unsubscibe me!!!

Tammy

Go to the following website to learn about dioxins.
http: www.geocities.com/tokjai/where_dioxin.html

Now Don't You put my E-mail on their that is Rajohnson01@...

A very nice, upbeat site it is too!

Chip

Anna,

I really appreciate your tolerance to add adults to this group. Most of the ones I've tried to be a part of, I was asked to leave as most parents don't like hearing the truth of the future for their children. They didn't like hearing about me, an adult. However, sb is real for adults too. My form, lipomeningocele, is a terrible one as people didn't know much about it back "in the old days". Most of us have incurable problems and we will only deteriorate more. Unless some type of cure is found, most of us are looking at the best days of our lives today as the pain and crippling will only get worse.
Thank you again for including us and making an effort to keep us here. For those parents I may have offended along the way for some reason, I'm sorry as you have enough pain to deal with as it is. I'm only trying very hard to tell the truth about this thing so we can get things accomplished. I'm very driven to find a cure. If not for my age group, for those children that will some day all of a sudden begin to "fall apart" and discover through many misdiagnosis that they have lipomeningocele.

Thanks again and Love to you and yours,

Chip

Oops! I forgot to add my address to my web site.

http://www.geocities.com/HotSprings/Retreat/2275/index.html

My web site contains an area of many links to a lot of research. I hope some of you go there as it may help to answer some questions.

Chip

Anna,

I've done this before. I've also given my address to my web site which has all that stuff plus MRI's etc. However, here is the basic stuff, even though I went to the web site and filled it out already.

My name is George Thayer. People call me Chip.

I live in Central Ohio.

Here is a copy of my bio from my web site;

This is what I have; Lipomeningocele (one of three main types of
spina bifida), a tethered spinal cord, reflex myoclonus, arthritis,
and scar tissue on the areas where back surgery has occurred.

I started out in life in 1953 by two loving parents hoping for a
healthy bouncing baby boy. I had a lump on my lower back with
hair protruding from this lump. This information was given to me
by my mother, Bette. She says the doctor "cut out the lump" when
I was one year old. Up until that time, she was afraid I would fall so
she kept me in the play pen all the time until the "all clear" sign
was given. No wonder I have claustrophobia today. Just kidding
mom! At that time, diagnostic tools were such that they didn't
know the full extent of what I had. They felt the problem was
resolved.

Not too long after that, my father died in an airplane crash. My
mom had no support group as we have now for just about
everything. Left with three young children and one with this
problem. Thankfully my mom came from a family that was able to
help out with us kids and all. I hope you meet some of them as this
site expands.

A few years later, my mom and us kids were fortunate enough to
marry Cecil Thayer. Well, at least my mom married him, we just
came with the package. He obviously adopted us and I'm so
grateful for that. Even though when they came home from the
honey moon, I went up and kicked him in the leg and said, "You're
not my dad". Pretty tough stuff from a little 5 year old to a guy that
was 6' 5". Thankfully, he set the record straight as all good fathers
did in those days and he didn't walk out the door. Thanks dad,
you can't be replaced by anyone and I love you dearly. And my
rear end still reminds me that you are my dad. haha

Later, 1969, my family doctor noticed I had a strange gait as I was
walking down the hall of his office. I was in there getting stitches
removed from my head from one of those stupid kid tricks! He
then got me to see a Doctor Herndon of Cleveland Babies and
Children Hospital of Cleveland, Ohio. It was diagnosed that I had
curvature of the spine in the thoracic area. Through physical
therapy, I was able to correct this condition called scoliosis.
However, my senior year, 1972, it was discovered that my problem
was more serious than just scoliosis. I had a form of spina bifida, a
slight opening in the spine. In July of 1972, I had a spinal fusion.
They took a bone graft from my hip and used that to fuse the lower
lumbar vertebrae. This seemed to correct the problem as pain in
the legs and feet became less.

As each year progressed in my life, a little more pain began to
develop in the lower back with pain shooting down the legs. I was
noticing numbness about 1987 in my right leg from knee down.
The numbness was confined mainly to the outside of the leg and
foot. The area numb was skin. After moving back to our town
where I live now in the summer of 1987, our family doctor had me
begin a lot of tests to find out why walking was getting more
difficult, why there was more pain and numbness. He suggested I
see Dr. Michael Meagher (pronounced Mayor) of Riverside
Hospital in Columbus, Ohio. Great guy. Good neurosurgeon too!!!

The MRI was finally invented and in full use. Thank God! I took the
MRI "tube ride" and discovered two things. I have
Lipomeningocele with a tethered spinal cord. I also found out that
I'm claustrophobic!!!

In December of 1987, I had further surgery to remove as much of
the lipoma tumor as possible and also some of the "dorsal" bone
(my description, not a doctors lol), the part of the vertebrae that
looks like a dorsal fin, so that some pressure might be released
from the spinal cord. That seemed to help for awhile, but the fun
was just beginning!

I am now using a cane and wheel chair to get around and get tired
so very easily anymore. This is a progressive condition. Will I
become paralyzed? Will the damn pain ever stop? What other
parts of my anatomy is going to stop functioning tomorrow?

I have pictures, MRI photos, of my back on this site. I also hope to
meet more adults with the same condition.

See More MRI pictures
with explanatory notes

* Recent Stuff:

I have been recently diagnosed with reflex myoclonus. This is
basically where I get a jolt of what feels like a shock up my spine
to my head and I usually relieve that pressure and burst of energy
with yelling "BAH'. I sometimes surpress it which is usually very
painful. I have medicine, Clanopin, I'm taking for this and it seems
to help some. Flickering lights, bright lights, being overly tired, and
motion seem to trigger this condition. I wear sun glasses
whenever possible and appropriate.

* My job:

After about 20 years as a band director, I became a principal so it
would be easier on my back and maybe I'd be able to prolong my
career in education. I really believe the most important resource is
our children. Education is most important and should be world
wide.

After three years of being a principal in Fredericktown, Ohio, I'm
now retired on disability. I wanted to stay and continue and feel I
could have, but my doctors didn't want me to continue either. The
doctors felt I was making the deterioration of the spinal cord
happen much faster than needed. They thought I should look at
my priorities which is my family and the things I wish to do with
the rest of my life.

I had to overcome a lot of depression after losing my job as a
principal because of this condition. From about the 2nd week of
June, 1999 to sometime in September of 1999, I stayed mostly in
my bed thinking I had no more goals in life to look forward to. I had
to overcome this depression as children and education was my
life. I had a deep compassion for those children that had less than
the norm and the passion to make sure we had the best education
for all of our children as possible.

I'm learning how to overcome this depression by allowing God to
come back into my life again to help me through this. I can't do it
by myself as I knew no other life. Along with God, has come a lot
of friends. A lot of people that understand pain. They may not have
what I have, but understand uncertainties about their own future.
A lot of friends without any back or other chronic problems also
have come along to help. Thank you so much from the bottom of
my heart.

A big Thank you to my family doctor, Dr. Edward Blackburn, for his
understanding, ability, insight, caring and just the ability to make
his patients feel so comfortable under the most trying of times.
Doctor Eddie, you've made a big positive difference in the lives of
many, but most importantly, to the lives of me and my family.

I hope this does it for you.

Chip

Hi everyone,
Just wanted to post a note to say hello and introduce ourselves.
I've known Anna for awhile now and think it's great she's taking the
time to run this list.
If I'd check my ICQ msg's more often I'd have joined earlier. :)
My wife, Sarah, and I have been married for 13 years. We have six
children, five boys and one girl. Our only daughter, Laura, was born
with mylomeningocele with hydracephalus onsetting 3 weeks after birth.
We live in Piqua, Ohio. Sarah is starting her third year of college
this week in her pursuit of her Masters in Education Degree. I am a
machinist in the aerospace industry making brakes and wheels for all
size airplanes and the space shuttle.
Please check out our website for pictures and more detailed
information about our daughter, sons and life around this household.
Doug Eckstein

Sorry,
brain cramp.
here's the url:
www.angelfire.com/oh/dofsix/
Douglas & Sarah Eckstein
dofsix@... (Doug's)
mofsix@... (Sarah's)
www.angelfire.com/oh/dofsix/

Peter,

I think you hit on something here. Not with Dioxin, but with the birth date. I was born in December also. How many sb'ers are born in December?
Sorry, but my grandparents didn't use agent orange on their chicken farm and my mom didn't use it in her corner grocery store for those of us that remember corner stores.

Chip

I was doing some work on the website tonight, as well as the egroups
page, and I noted that my description for the email group was based
towards attracting parents with children having SB...
I remember an earlier discussion about making this more for all
people, not just parents, so I changed the opening message :o)
Heres to a wonderful and FAST growing group of wonderful people,
reaching a total of 60 members in only 3 months :o)
Anna

Ok all... Im ready... going to start adding you all to the website,
I decided the best way to do this would be by the date you joined the
list.
The following emails are the first few I will be adding
Still looking to hear from:
RSCHANEY@W...
Sdoceanwinds@a...
CDZAJ@a...
JGEFY@a...
Rajohnson01@m...
Now also looking for info from :
snowanne1960@...
Seeshepp@...
jenifitz@...
george.thayer@...
If you are one of these, please forward me an email answering some
of these basic questions.
1) Your name (for alphabetical listings on website)
2) Your area of residence (for residential map listings)
3) A brief yet complete writing on your dealings with Spina Bifida.
basically, (if it is you or your child) what leval of Spina Bifida,
other syndroms you/they have that is much a part of your life. If it
is a child, a birthdate may be appropriate, so other parents can
match theirs with yours. Hospitals you have been to, trials you have
reached and goals you have set.
4) any URLs you want added to your infomation, either your own family
website, or a Spina Bifida website that has impressed you.
5) Your email address.
Remember, this website is there for two reasons, 1) to help the other
61 members here see just who you are and 2) for all other visiting
surfers to find someone that has gone through what they are going
through, and perhaps reach out and find a responsive hand.
Please send these in asap and I will do my best to update the website
as soon as they are in.
If you want to check to see what the others have written in their
Bios, link to the site at
http://spinabifida.kidsbooth.com
and hit "Members"
Keep in mind the members that are on there now are from an old list
and you wont reconize them from this list. (Thus the need to update)
Thanks in advance
Anna

There is also the definite connection to Dioxin and Spina Bifida.
This is the element in question in Agent Orange...that element is
Dioxin. Dioxin can also be found in a defoliate spray for Dutch Elm
disease. This is where my mother thinks I was affected while she was
pregnant with me in 1965. I was born in December of that year.

Oh, dear i blushed a little reading about your comment "pain during
pregnancy"
Yes! I had terrible pain my first two to months too. Only mine was
constant. I couldn't bear to stand. I was also plenty sick. I had to go
on bedrest at two months until I was ready to deliver. Yup! That's a
mighty long time to rest. I was sooo sick! Anyway, as far as pain doing
"adult" things, well, I am 4ft 10 in. and my ex is 6ft. 7in. You do the
math, so yeah, it can hurt sometimes. I was 22 when i had Kayla.

Anna,
I think you make a very good point on the water connection. I've worked
alongside the Mississippi River for over 9 years now. Travis is 4 now. I
work across the river from such chemical plants as Dow, Exxon, etc.
Needless to say, this water is less than spotless. Makes you wonder.....
Stacy

Hi there! I wonder if you wouldn't mind a little question. You said
Travis' dad ignores him and his condition. My impression is that you are
remarried just like me?
Anyway, I am worried about Kayla's natural father not participating in her
care. He see's her regularly but he doesn't go to doc. appts., school
functions, or even bother asking how she is doing. BUT, if she has the
sniffles he gets all over my case to give her cough medicine!? Uh, don't
bother with the fact she has much more serious issues, the runny nose is the
worst thing in his mind. Anyway, he has sworn up and down that she is just
rebellious and it is only towards me. He swears she doens't ever wet when
she is there. I am dreading the docs. visit on Monday where he tries to
argue with the doc. about the test results. Lord help me! I told him he
better be there this time. he has never bothered to come to any of her
tests or clinic visits. I just wanted him to hear it straight from the
doctor this time and not from me. I vow that if he doesn't come to this
visit I won't send her back over there until he takes this seriously. What
good will it do if only one parent is treating her for sb and the other
ignores it? I classify that as child abuse. Anyway, I just don't know how
to get through to him and his wife. She is sooo snotty and disrespectful
toward me. We can't have a normal coversation without her butting in and
wanting the world to revolve around her and her schedule. She is much
younger than we. I hardly think she is ready to deal with all this. Plus,
she has a real attitude problem about kayla in the first place. They treat
me like I am some kind of monster and blame me for her sb. They act like
they are so much superior to me since their child together is healthy and my
second child has a serious birth defect.
I am really mad at how unfair things are right now too. I guess. My ex did
everything he could to mess up my life on purpose. He admitted it and he
continues to try and make me suffer. He said i was the perfect wife and I
did nothing wrong....but he didn't love me. Okay! Great! so life goes on,
but I am still cleaning up his messes and dealing with all the crap he
ignores. He goes on skippedy doo dah-ing through life with his teenage wife
and new healthy baby while I deal with two special needs kids and struggle
all the time to scrape together enough money for all the med. bills. Oh
dear, I have gone off on a tangent....sooooo sorry. (blush)
Danell

Made me remember something I heard before. Sometimes God has to make some
special people to teach others a lesson and he needs some very special
people to take care of them for him. Maybe we've all been picked for this
special assignment because he knew we could handle it.
Anyway, I don't think that there's any one thing that caused us/our children
to have SB, I think it's many things that happen maybe all at once. We just
go on. To us this life becomes normal. I know I wouldn't have Travis any
other way. Sure, I'd like him to have no problems, but then would he be the
same sweet loving little boy he is?
Stacy

Annah, well you made a good point about the location and population of
people with sb. I have thought that they are clustered in big cities too
with lots of smog.
Another thing we find interesting is that my dad just tested positive for
agent orange. He was sprayed in Korea while serving in the army. He is
very ill and they have asked him to list any birth defects his children
have. They are numerous, but he was worried and blames himself for Kala's
sb. I don't think he did it to her or passed it on, but who knows? It
could have been there waiting to show up! It doesn't matter now, no amount
of money for compensation will change things. I just let it go.
Danell

Hahahaha...Stacy, I like your position comment. :)
I did forget to mention yesterday that my physician did mention
another thing that may be a factor in sb.. I hope and pray I do not
strike a nerve, for I do not mean to offend anyone or imply anything
at all. But this hold true in my case, as well as the environment
thing..
My doctor also mentioned to me that many times women that are abused
have a higher chance of having a child with birth defects. Has
anyone else heard this?? I was abused when I first got married, so I
think MAYBE this may have contributed. Or, yall tell me--is my doc
way off on this?
Also, I had serious , very hurtful pains during the first 2 months of
pregnancy? Anyone else?? I have always been to embarrassed to
mention this to my doctor, because these pains occurred during
things that "adults" do..and I was very young when I was
pregnant..19. But after Valerie, seems like I did my growing up over
night.
And as far as the environment..hmmm...I am around a lot of water,
also during the time I got pregnant, I worked in a factory, a motor
factory, and I was around a lot of chemicals and electrical shocks.
Yall have a good day!
Stephanie
(mom to val, 6, wheelchair, and braces that do not
fit..lol...tennessee)

In reply to the other comments on Folic Acid...
Stephanie mentioned the 3 areas, they cought my attention and I would
love to share a few ideas on that.
1) lack of folic acid 2) hereditary 3) something in the
environment..
S'Rena, my daughter with SB was concieved when my son was 3 months
old. She wasnt planed hehehe While I do believe that folic acid may
be a help in many cases, I dont feel it is to be rated higher then
any other prenatal meds. There are to many factors that can go with
it, and to tell a mother to be, that taking folic acid will prevent
SB is in my opinion a false statement.
heredity... my cousin was born with SB about 40 years ago. They
didnt know that much about SB and hydro at that time, and the child
was not operated on. She lived to be 2 yrs. So it is in my family.
My brother (26) suffers from severe back pains, since he was very
young. When asked to have it checked out, he found he has a mild
case of the SB. Do I believe SB runs in the genes? YES!
Something in the environment. I have something Id like to share with
you all. It is not scientific, nor is it a proven study, just an
observation. On the website, I have a site map of North America, in
which the many list members sent in their bios and I sorted them out
by area location acrossed North America. If you take a look at the
map, you will see that the majority of the members, are by the
water. hummm now thats interesting isnt it? Pollution,
Environment? Yes I believe it has something to do with it as well.
Just my two cents worth.
Anna
Mom to S'Rena (5yrs with SB L3-L4) Living in the waterfront province
of New Brunswick Canada!

Hi Chip, You sure have a sense of humour (re the bowels)! I appreciate
your comments & understand how you have come to your conclusion about
the folic acid. (BTW the letter was directed at someone else). I agree
it sure can't hurt to take the stuff - I'm not against that - I just see
the agony some parents have gone through after doing the 'right thing' -
by taking it and still giving birth to a child with a NTD. Who knows -
maybe these people are extra deficient and therefore, should have taken
an even higher dose...I still say, roll on scientific research...and
lots of it!
Re the bowels - I belong to another SB list & a mum there (Linda) is
very knowledgeable about bowels. She went for years blaming herself for
her child's constipation...because the nurses, etc. were blaming her!
In fact, she had been very diligent with the diet & was tearing her hair
out ...eventually got on a bowel programme which is now working for
her. Her child is around 9 yrs old - I'm sure she won't mind if I give
you her e.mail:
Linda L Larson <linl2000@...
Right now, diet alone doesn't work for my son either & he started
becoming constipated as a 2 month old baby. We use Lactulose, but to
start with you need 'cleaning out'. We used enemas - I have no idea how
bad you are & whether that would be enough to 'kick-start' everything.
But anyway, once Aaron had an enema we then give him 5-10 mls daily of
lactulose. It works by the stool absorbing liquid, thereby bulking up
the stool making it easier to pass. Aaron has no feeling or pushing
sensation, but despite this he seems to have a BM just about every day.
We tend to lift the legs & slightly push on the abdomen to initiate
things. So now I very rarely need to use an enema - maybe once every
couple of months - if we've been out & he's missed the lactulose...well
you know obviously what can happen if a routine is upset. If you are
really bad - and I'm sure you have already been through this, but there
is stuff you drink which literally dissolves everything! I've also seen
kids in hospital having this done - a lot needs to be drunk & as they
refused it, they had an NG tube to give them the required dose...
Anyway good luck!
Tui

Danell, I have sent your letter on to others who use Ditropan so hope you get
plenty of letters here. I can really relate to your fear of catheterising.
When I first saw other Mums doing it in hospital for their kids - my feeling was
- thank goodness we don't have to do that. Little did I know that things would
change...I was told by the urologist that a SB child's bladder changes at
different stages of their life. I can't remember exactly but it was something
like at 1 yr, 4 yrs, 7 yrs...
The first I knew anything was that Aarons belly felt hard (around 1 yr old) - I
had no idea what was happening - I had not been warned or prepared for anything
so took him to our local Dr who confirmed it was his bladder, and promptly sent
me to a paediatrician. He expressed Aaron's bladder (manually) getting well
over 250 mls. The poor child was full to bursting! The paed. looked at the
nurses & asked one of them to teach me how to cath - right there are then!
Nurses don't cath males in normal hospital situations in NZ - but obviously in
specialist hospitals they do. So they had to call in a doctor for the hospital
who patiently showed all of us there - myself and 2 or 3 nurses standing around
in a consulting room. Two nurses had a turn, they turned to me & said how about
you now? I said I wasn't ready! The doctor left, then they insisted I try. I
felt quite sweaty & nervous but I managed to get it in first try. I believe it
is much easier for girls. I went home that night & had trouble - I would sit on
the floor with Aaron trying and trying. It was very frustrating to start with.
It probably took me a good 6 months to get it down to a really slick practice,
but I think there were things about my technique that could have been improved
right from the start. I had to learn this for myself what I was doing wrong
that made it so tricky at times. Now it is a breeze! I'm so grateful I am able
to help Aaron in this way - to avoid UTI's, etc.
He is quite different from your child in the type of SB - plus he is still VERY
floppy - unable to sit on his own - he's nearly 2½ yrs. We cath 3-4 hourly and
now that we have single-use catheters it is so much easier, not having to carry
containers to wash everything in case we go somewhere where there is no hot
water, soap not there, etc. We try not to allow more than 80 mls build up in
his bladder but we don't always get this right...
I think parents have enough to cope with, without having the stress of worrying
about washing catheters, so IF you have to cath, I would encourage you to get
them to give you single-use caths. They are very cheap & if your child is prone
to infections (as Aaron) is, I'm sure it is cheaper in the long run & better for
the child, instead of pumping antibiotics into them for constant infections.
I can't speak for your health system in US - who does the training but I quite
liked the idea of a group training session for kids (Jen's letter). We
certainly don't have the numbers where I live for that to happen. Aaron is the
only child within 1 hour's drive with SB. (I know the outreach nurse & she
would offer to introduce someone to me if there was one in the area).
I have seen kids here learning to self-cath at 10 yrs. I guess it depends on
their mental and physical ability as to what age suits. I found it helpful for
my husband to learn how to do it also - even though he isn't around Aaron as
often as I am. But if you need to have a break - someone needs to know how.
Take heart! It's not so bad, once you have learnt how to do it. And I believe
it is easier for girls. You can do it! But I do understand your fears...Sorry
this is so long, but I really sympathise!

About a month ago, there was a discussion going on about bowel movements and what you can safely take for constipation.

I'm in need for some help here and vaguely remember someone coming up with something many of you tried and seemed to like. I'm using prune juice, a good diet, and some different types of "natural" laxatives (as they say on the box). I know some of you think I'm full of it. I really am!!! I need some help or our small village will turn brown if anyone pokes me with a pin. Actually, that might make me feel better...
Also, that might be the answer to what causes sb. Is it being constipated? OKAY... Do anyone of you parents remember being constipated around the time of conception? How about being just nervous? Maybe that's the main reason. Naw. I think it's constipation. I'll have to ask my mom if she was constipated while her and my dad were, well you know, conceiving.

Chip

ps. Please help! Being full of it isn't any fun at all.

HI there, i am the mother of a 13 year old daughter with spina
bifida,around L2, she has no feeling from the waist down and uses a
wheelchair full time.She is in the 8th. grade she is on the a/b list
she is in a small class because she gets very distracted easy.I to
dont fill like spina bifida is caused by just a lack of folic acid, i
took my vitamins,i belive that it also could be caused by heridity
and the eneironment{we live in Arkansas}BUT I AM IN KNOW WAY SAYING
TO STOP TAKING FOLIC ACID,IM JUST SAYING WE DONT KNOW......Kim had a
bladder augmentation in 1992 it seemed to help,she is back on
ditropan because when they took her off it she just seemed to wet a
lot more in between caths...{SHE IS CATHED EVRY 3 HOURS}.She has not
learned to cath own her yet,she has whent into the hospital for
cathing therapy and has had home health come and teach her but still
cant get it.She understands the prosses but jut cant reach or see
what she is doing,we have tried mirrors but that didnt help,Dr. &
nurses has said she will get it but we are still waiting,her OT
doesnt think she will be able to do it, so if any one has a sugestion
please let us know...We have talked to thr Drs. about doing the
surgurey where she is cath threw the belly button but they said,she
had to lose some weight{she weighs 180 lb.}kim also has a vp shunt
she has had a lot of problems in the past but is doing fine right
now...I to fill like the the Drs . dont tell you every thing you
should know...well i got to go kim just came home from school...we
also have a 151/2 year old daughter that doesnt have sb...fill free
to email us , we like talking to other familys thats going threw the
same thing.......Sharon

I learned to cath in a Pennslyvania hospital at the age of four. It was a
pretty unique program that my parents found - a "cathing camp" of sorts. We
had a special program set up in a wing of the hospital, and there were about
10 of us. We stayed for a week and learned clean cathing (they separated
girls and boys). We were taught using models of the vagina and were
supervised by RNs while we practiced. By the end of the week, we were a
little homesick, but we knew how to cath. They even took us out to dinner so
we could learn how to do it in public, if we were at the movies or mall.
Those people were great - it was just for kids with SB and they took care of
bowel programs, crutches, meds, and whatever and taught us independence. I
was the youngest child there, but all were younger than 7. It really worked
for me - I did it completely independently after that.
Most kids are taught by RNs in a clinic setting, using a mirror, and take
over gradually. Once you "get the hang of it" it's really easy. You know
where that "spot" is and you can find it easily.
Jen
(15, lipomyelomeningocele L1-2, wheelchair/crutches, self-cated, latex
allergy)
AOL IM TheSingingAngel
Homepage http://jenifitz.homestead.com/jenifitz1.html
Tony Arata

Danell, I'm assuming that you are worried about learning to cath
Kayla. Cathing another person is very simple. The nurses at the
hospital will teach you. Through another TCS list I found ladies
there who had daughters in the same situation. They had taught their
girls how to cath themselves and they were able to help me and my
daughter. The key was that Becca had to be ready. Once she found out
that other girls her age and younger can do this, then she could too!
It has only been 4 weeks since she has been doing it herself, for the
most part I'm her cheer leader in the bathroom. I would be happy to
help in any way I can. Let me know.
Christie
--- In Livingwithspinabifida@egroups.com, Connie Yates <cdyates@f...

dear danielle i learned to cath when i was 12 im 28 now.ijust got on the
toilet and stayed there till igot the catheter in.they tried to show me at
the hospital i just didnt get it so good luck ...... barb

Danell,

I'm not a kid and had no help with lipomeningocele as a kid. They just didn't know what it was that I had and millions other like me "back in the old days"! However, I take detrol to help the bladder to relax and I take flomax that helps the prostrate gland to relax.
If I just take detrol, the bladder gets real big with no place to go as my prostrate is swollen. So I have to also take the flomax so it can go some place. Kind of like all dressed up and no place to go.

To Stacey;

Vitamin B (folic acid) is a major cause of spina bifida. Please look it up in one of many reference sites on the web. You are right that it probably isn't the only reason. Genetics "may" have something to do with it. But that is probably the same reason the first one got it in the first place. Stands to go that if your great grand ma had a folic acid deficiency, so would the generations after that.
As far as making moms feel bad about not taking vitamin B, how would they know? It's not their fault. My mom had a terrible vitamin B problem, but didn't know she had that until long after I was born and about 20 years later they found out that having a lack of this is the main cause for sb.
Don't apologize. You don't need to.

love to you and yours, Chip

Okay, here's a question, where did all of you learn to cath? Is this
something the hospital doctors or nurses teach? What do you practice on?
How do you explain to your child and get them to cooperate? This is a big
fear for me! If I know a little more I may feel more confident and not
break down if this is the news I get. To start cathing that is.
Danell

Yes! I need more information about Ditropan and bladder pressure. My M/M
clinic is well meaning but they treat me like i am fragile or
something..they never tell me more than they feel I need to know. Since
Kayla is the "healthiest" child with sb in the clinic, we get different
treatment. The parents actually have said things like "what are you here
for, you don't need support. Your child is fine." So, you get the picture
that we don't get as much attention as I feel we deserve. Also, they are
really bad about not informing me about her condition. When she was born, I
had to wait a whole month before someone would explain to me what sb is. I
had no idea whatsoever. They just sent me home with a baby who had a lump
on her back and told us not to lay her on her back. I called the hospital
everyday until finally someone agreed to sit down with me and give me some
booklets to read. It was just a week before her surgery.
I am feeling very uneasy. I have lived with the hopes that we would never
have any further symptoms of the sb. I guess I have been living in a dream!
I had no idea until I found this list that lipomeningocele was a progressive
problem. I don't know what to expect. I pray we don't have to start
cathing. I certainly don't know if I am ready for that. I have no clue
what that entails! I am so scared. I know I can do whatever I need to. I
will have to learn to deal with it, but I don't know how I am going to get
her to cooperate.
Do some kids just take medicine to ease the bladder pressure or do you think
they all get cathed?
The worst part about all this is that I am so inexperienced and completely
ignorant about lipomeningocele. I have read the links from Chip's sight and
that is about it.
HELP!
Danell

Hi Danell, My son Aaron has a high pressure bladder which was confirmed after
urodynamic studies. What we were told was that it is important we cath. often
enough so the bladder doesn't fill to more than 80 mls. So...depending on his
food intake for the day we judge when he needs cathing by feeling his bladder by
pressing down on his lower abdomen. We can feel when it is full. Yes, I
understand that high pressure puts the upper urinary tracts at risk of
infection. Aaron was getting plenty - maybe we were not cathing often enough -
but I feel there were other factors contributing to the infections also. But I
have no doubt cathing him as often as we do has helped. On average I would do
it every 3 hours - particularly an hour or so after eating. My understanding is
that Ditropan is a muscle relaxant & as the bladder is a muscle, by using
Ditropan it allows the bladder to hold more. Some kids' bladders spasm causing
them to leak constantly & by using Ditropan - I think this reduces the incidence
of this. Aaron is not on any drugs including Ditropan, we only treat infections
as they appear. Hope this is of some help. If you want more info. let me know
- I belong to another list whose kids use Ditropan.

--

Hi everyone. Me again. I have some questions. The urology nurse called
today and gave me some unexpected news. Our appointment for test results is
this coming monday. She told me that the doctor is going to talk with me
about kayla's bladder pressure. She said tests indicate that the pressure
is too high for her age. She explained that over time it could hurt her
kidneys. She is supposed to start on detropan? to lower the pressure in
her bladder.
I am just repeating what she said. I have no idea yet what all this means.
Anyone wish to clue me in before I meet with the doc. suggest questions,
comments?
Thanks,
Danell
mommy to kayla 4yrs. (lipomeningocele) and Alicia 1yr. (epidermolysis
bullosa)

Dear Gramma Carm.

My prayer is on it's way to our savior. I have lipomeningocele, a form of sb. I'm 46 and know the misery of sb. I pray your grandson has the grace of God and a cure for this condition. There are many of us working hard to get people educated about this and hopefully get the proper research done so we can have a cure.

Love to you and your grandson,

Chip aka George

OK, not to rain on the parade, but I think there is a misinformation in Chip's mail. There are other factors that cause SB beyond not enough folic acid. Personally, I do not know what caused Travis' SB, but I do know that there are parents that have had child/ren with SB while on prescribed doses of folic acid. It certainly helps, but I don't think this is the only cause. Sorry, I don't mean anything by this, but I want to make sure that there isn't someone new here that will think that if I had only taken folic acid, this wouldn't have happened to my baby. I know, this is how I felt. On the flip side, I think a television program is an excellent idea. There are many people who have never heard of SB much less the more serious aspects of it.

Stacy

Dear friends,

We have an opportunity to tell our story on tv! I've been working with person that has the attention of a major tv channel and backer for this opportunity. They have asked me not to mention their name or corporation at this time b/c they do not want to be flooded with letters and/or phone calls.
What the program will be about is Adults with lipomeningocele and/or tethered cord syndrome. There are a lot of us adults that have been misdiagnosed or not diagnosed until later on in adult life. We wish to begin with three general categories. They are;
1. Those adults that have had successful surgery to untether the spinal cord.
2. Those adults that have had UNsuccessful surgery to untether the spinal cord.
3. Those adults that have had some type of surgery and can not have surgery due to scar tissue or nerve damage from a previous surgery.

At this point, we feel it will take almost a year from now until the program is actually aired on tv. I hope and pray that if you are in one of these categories, please e-mail the following person.

kathylynnfl@...

We will need to have your medical bio (i.e.. I'm a lipo with arthritis and scar tissue. I live with pain. I take the following meds. I do not have a regular neurosurgeon, just go to my regular family doctor and urologist. I'd like to get some type of physical therapy. I've lost my job. etc.) and what ever else you'd like to list.
At this point, we'd like to inform people of what it is we have. This third type of spina bifida is very misunderstood. It is a progressively crippling and very painful condition. There is no cure for us adults as we watch ourselves deteriorate. We need to tell our story. By doing so, people with this may begin to seek the professional help they need, and we may get someone's interest enough to begin real research to cure lipomeningocele and/or tethered cord syndrome. I know this last one may seem far fetched, but I wish to contribute and work on this until this dream is visualized. You all know I'm 46 and I'm not in the best of shape physically. If we can't find a cure for me and other adults with this, we must find a cure for those kids that are walking around today that do not have any idea what is going on with their bodies.
We might even be able to prevent some of this from occurring if we can get the word out to millions that if the female takes a supplement of folic acid if they wish to have a child b/c this is what causes spina bifida. All we need to do is get some vitamin B supplements in our systems to avoid this PRIOR to conception. After you find out you are pregnant, it's too late as the condition happens within the first 20 some days of conception.
Getting a special program on tv will be a very big boost for us. This is a great opportunity to tell YOUR story. Please, please be a part of this very exciting opportunity.

Love to you and yours,

Chip

Anna - I am Gramma Carm, grandmother to Adam who has SB. He is 17months
old. Has hydrocepholaus and L-3 SB. He has a shunt and just last night had
to have his first shunt revision. He is in St. Vincent Hospital, Green Bay,
WI. He has to be cathed every 4 hours, except not at night. He has bowel
problems. He does not walk. Can move his legs a little, his right leg
more than his left. He may get braces this month. I am so worried right
now about the shunt revision. His dad said he was in ICU and had tubes all
over him. Poor little guy. I hope everyone will say an extra prayer for
him. Gramma Carm

Hello,
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Regards,
asmh@...

Ok all... Im ready... going to start adding you to the website, and
taking the other names out of there.
I decided the best way to do this would be by the date you joined the
list.
The following emails are the first six to have joined the list. All
joining in August.
RSCHANEY@...
cehlers@...
Sdoceanwinds@...
CDZAJ@...
JGEFY@...
Rajohnson01@...
If you are one of these 6, please forward me an email answering some
of these basic questions.
1) Your name (for alphabetical listings on website)
2) Your area of residence (for residential map listings)
3) A brief yet complete writing on your dealings with Spina Bifida.
basically, (if it is you or your child) what leval of Spina Bifida,
other syndroms you/they have that is much a part of your life. If it
is a child, a birthdate may be appropriate, so other parents can
match theirs with yours. Hospitals you have been to, trials you have
reached and goals you have set.
4) any URLs you want added to your infomation, either your own family
website, or a Spina Bifida website that has impressed you.
5) Your email address.
Remember, this website is there for two reasons, 1) to help the other
61 members here see just who you are and 2) for all other visiting
surfers to find someone that has gone through what they are going
through, and perhaps reach out and find a responsive hand.
Please send these in asap and I will do my best to update the website
as soon as they are in.
If you want to check to see what the others have written in their
Bios, link to the site at
http://spinabifida.kidsbooth.com
and hit "Members"
Keep in mind the members that are on there now are from an old list
and you wont reconize them from this list. (Thus the need t update)
Thanks in advance
Anna

This message has not bothered me at all,thank you for your concern!

I'm really sorry about an old message that keeps popping up & getting
sent to the list. I am doing my best to correct this really annoying
glitch. Hope it doesn't reappear!

Please unsubscribe me.

Thank you,

Tammy

Okay, I've actually taken the time to add some pictures to my website of the wedding. There is a wonderful picture of Travis. Ok, so I'm a little prejudiced. Anyway, here's the site, just go to the wedding pic page.

http://www.geocities.com/stacyannb

Stacy

Yes,

I'd like to know how to deal with bladder and bowel problems too!

Chip

Hey! I wouldn't mind having some scooby Doo underwear. It might bring a smile to my wife's face.

Chip

Danell,

First of all, either shoot your husband (I'm kidding here of course and don't want to be a part of a conspiracy to kill!) or get him some education about sb! I hate people that are so shallow and cruel b/c they don't understand or lack the intelligence to understand.
People with sb, in particular, people with lipomeningocele, WILL have or DO have problems with their bladders. PERIOD! It's not out of being lazy or out of bad parenting. That's a crock. In fact it angers me to make a little girl or boy feel so bad about something they have little or no control over.
I am getting worse. Lipos do get worse. They do not get better and there is no operation for a person over the age of two that will change the fact they will have bladder and bowel problems. It's just a matter of time. In fact, on my web site, I have a group of adults that write everyday. Recently a 56 year old lady just found out she has sb, lipomeningocele. It started with the lower back pain, leg pain and eventually urination problems.
The problems are different between different people and most importantly, the problems differ with the person from day to day and during the day.
Some examples; I'll sometimes wake up in the morning with a diaper ( I wear depends to sleep in. Started that about 1 to 2 years ago as we got tired of a wet bed!) that is very full of urine. Other mornings there is nothing. During the day time, I have a difficult time urinating and SOMETIMES I have to massage the area to help urinate. If I don't, the urine will not come out. I have an inflamed prostrate gland. That makes it difficult for urine to come out. Also, my bladder is neurogenic which most sb people are. That's why you hear of these other people talking about caths and all. B/c they can't urinate on their own.
My biggest fear, is that I'm going to have to be cathed down the road and probably sooner than I want. As a 46 year old male with an inflamed prostrate gland, that does not feel good at all and add to it the UTI's everyone is talking about, doesn't sound like a fun way for me to go eventually.
To recap, there is nothing wrong with Kayla except her dad. I feel really bad for her as she is going through what many of us adults went through. I know what she is going through. Help her out. Don't make her feel bad. And for goodness sake, get to your lawyer today before Kayla gets abused by her father by being denied the fact that she is normal for a sb'er. Don't let her stay with a father that won't allow her to be herself. It's abusive to make a child feel that she is lazy or crazy for doing what is coming natural to her so she can try and urinate.
Sorry Danell. This one really infuriates me!!!

Please keep me posted. I really feel for Kayla.

Love to you and yours, Chip aka George.

Just an FYI,
I've read a few posts from a couple of people saying that they push
sometimes to make themselves pee. Since Becca's last surgery she has
to be cathed every 4 hrs. They said it was temp. (they were wrong)
but anyway, she was starting to go a lot more on her own after school
ended for the summer. I thought yeah! she going to get her bladder
back. Then I noticed she was pushing to pee. About this time she had
an ultrasound and VCUG and they discovered a reflux into her left
kidney. (yet another surgery to come) Anyway, through another list a
parent let me in on her experience. Her daughters 1st uro said that
Sophie would learn how to pee through pushing. Well that urologist
didn't last long and it turned out that Sophie had a reflux and that
pushing only causes the urine to go straight back up to the kidneys.
It sounds wierd to me but needless to say Becca doesn't push anymore.
I've told her to let the catheter do the work of draining her out.
Just thought I pass this on to y'all.
Thanks,
Christie

Hi guys,

How strange, a friend of mine had this done about five yrs back and has alot of problems with wetting it seems.

She seems to be experiencing direrra too with everything she eats. It isnt diary food as she hasnt eaten anything like this since having a mitrofonoff, she is on quite a few meds though, any suggestions?

karen37

Danell,
My heart aches for you having to wait for the MRI results.
That is almost the worst part. This probably isn't the best news you
could hear right now, but my daughter, Becca, had a 2nd de-tethering
last winter. She had her 1st surgery (1991) at 10 months old.
Everything went silky smooth, no complications. The NS always said to
look for wetting accidents and pain in the legs and/or back. Well
sure enough she started having all of these things. We had the MRI
and it was tethered again. When she would have these wetting
accidents, I would go crazy because once or twice a day she would
just make it to the potty, then she would be sitting there at the
table and just pee all over herself and wouldn't even know it. I
sometimes thought that she was lazy too, but through another list an
adult with SB/tethered cord would experience the same thing.
Sometimes the nerves connect to the brain to let you know it's time
to go and sometimes the don't. Kind of like a short in the wiring.
I know this isn't a lot of help, but just know that there are people
out here that know how you feel and sometimes that is the best help
of all.
Best of luck, I'll be keeping you two in my prayers.
Christie

Thanks to everyone who responded to my message about Magic Bullets. I have
some on order. Hoping they work as well for us as they do for you.
My quote of the day:
"I'll take baby steps, as long as I'm moving forward."
Anyway, I guess I didn't give anyone much information about Travis' SB.
He's S3, myelomeningeocele removed at less than 1 day old, no hydro, no
further surgeries, nothing. He looks like the average 4 year old, but he's
definitely above average to us. I'm just waiting for the day I can buy him
that pack of Scooby Doo briefs that he wants without having to tell him if
we bought them, he'd have to wear them over his diaper. His poor little
face just breaks my heart.
Anyway, my husband and I, (not his 'birth' father)are going to do everything
we can to make that frown turn into a smile. I hope to have my website
updated soon so that all of you can see us.
Thanks, I knew I could count on ya'll.
Stacy

Hey George! I was wondering about something you said. You have to massage
your abdomen to make the urine come out? Why?
I have been keeping a close eye on Kayla and she pushes, kind of like
grunting or bearing down when she urinates. I have wondered if she is
forcing herself to go or if she has trouble getting it out.
She is up to three and four wetting accidents a day now. I think much of it
is pure laziness. Her father swears that she stays dry when she is with him
for weekends. Of course, here is a man who is in denial about her med.
condition in the first place. He says that he even forgets she ever had
surgery most of the time. Okay, I am a little upset with him right now. He
is pushing me to let him keep kayla for an extended time because he thinks
he can make her stop wetting herself. Apparently he thinks I am incapable
of parenting her and that she only has accidents because I am not taking
care of her. OH! I could just scream sometimes! He gives her latex
balloons and toys, never visits her when she is in the hospital, and doesn't
come to any doctor visits. He insists she has no problems at all. She just
is mad at me or something.
I guess she could be doing this for attention, but I don't want to assume
that and potentially ignore a real problem. Wouldn't you agree that getting
her tested is smart since having a uti and so forth could cause her more
harm. Especially given the fact she has cysts on her kidney and the
potential for serious problems with bowel and bladder control. Anyway,
enough venting. I just have no idea what is going on with her little body
and she can't communicate with me. I just keep watching and trying to
understand. Won't have test results for two more weeks and I am getting
nervous. We have gone four years without needing any treatment or programs
and I am scared to have to face the what if's! I don't understand how the
bowel and bladder work in the first place. If she has feeling everywhere
else, why wouldn't she be able to feel when she needs to pee?
Danell

A Mitrofanoff is a catheterizable continent urinary stoma. Allows you to
cath though the stoma usually on the lower part of the stomach. Less
painful, more reliable about staying dr inbetween caths. As worked
really great with Nicholas. Easy to cath when we our out shopping,on a
picnic, or just visiting. Can cath him when he is standing,sitting,or
laying. Nioholas is just now starting to learn to cath his self. I see
him having more independence with the Mitrofanoff!
April (mom of Nicholas 9 SB L3)

April,
this might be a dumb question, but what is mitroanoff?
My daughter caths. She just learned how in the last 3 weeks. Her
problems are not as severe as the other children on the list.
I have never heard of this term before, so if I learn it I can
impress someone I'm sure! LOL
thanks,
Christie

To all the members of this list,
Some of you may have linked to this mailing list via the origional
website and purpose for making the mailing list, and some of you may
have found us by a search engine.
Either way, it is time for me to now re-do the website members.
Currently there are names of over 200 people that were on a mailing
list I once belonged too. I havent had too much contact from there
in a long time, and I feel that the members of this list should be
the ones on the website.
In the next few weeks I will be looking for bios from the members
here, I have 57 names as of today to add.
Please take a few mins inyour day to have a look at the bios that are
on there now so you will have an idea of what I will be looking for
when I come to you with questions.
I will and can include pictures, email and URLs to other website as
you will see. I will also take suggestions, and I follow them to
about 90% unless it is really OUT THERE lol
Please, make this site OURS, and make it a resourse to help all other
parents, adults, and sometimes even doctors, to get the answers they
need from us... the ones Living with Spina Bifida!
http://spinabifida.kidsbooth.com
Thanks
Anna

Hi Everyone! Have a question? Has anyone had leakage at thier closuresite?
Nicholas has had this once before his Chairi decompression wasdone. On sat.
Nicholas complained that his back felt wet. I checkedthis out and it seemed to
come from his closure site. He has notcomplained but one time (so far). Not sure
how to handle this with itonly being one time. I am still real concerned! Also a
few weeks agohis backed locked up and he was unable to move for about 25min.
withlots of pain. Asked the Dr. about this and was told just to keep aneye on it
due to most SB kids have this. Is that true? April
(worried mom of Nicholas 9 SB L3)

Holy Cow April!,

You know more big words and I'm a former principal. LOL When I was a kid and complained about pain, they told me, "it's growing pains so quit complaining". Really. That's what I was told. Of course, when I was a kid, if you had lap seat belts in your car you were considered a sissy and no one did the type of back surgeries on kids with lipomeningocele as they do today. Just wasn't done as 1. They didn't know it was there as fatty tissue doesn't show up on x-rays & 2. If they knew I had lipomeningocele they didn't have the tools to do anything anyway. Not enough research back then.
My purpose in pointing this all out is that many of your ("your" in this situation means any parent that has a lipo or myelo for a child, not an adult with it) questions just don't apply to the adults with sb as we didn't have the type of technology to do the things that are happening today. However, if you think there is leakage, something I know little about, I would contact the doctor NOW. Wake him up... Get him off the golf course... Tell him the movie isn't that good... etc. But get the doctor and find out as fluid coming out of anyone's back is not normal.
Secondly, pain is a part of lipomeningocele. I forgot which type of the three main types of sb Nicholas has. Pain is a big part of mine. I guess that's why I'm on so many different types of medication, pain medication and a tens unit. There is no getting around this, it is painful and there isn't a whole lot you or anyone else can do about it accept try to keep him comfortable. Of course I mean that if he has lipomeningocele. I can't speak for the other two types as I've not personally experienced it.
Best wishes to you and your son. He is so lucky to have a parent that is so concerned about his well being by being well informed, knowledgable and you ask for advice.

Chip

Chip,
Thanks for the info and the address to your site. I appreciate it! In my
message w/c is a wheelchair. I was just to lazy to type it out:o) Well,
thanks again!
Beth

Hello everyone, what a response! Thank you for making me feel so welcome!
And thank you to Karen, Charles and Beth for the resources you gave. Rather
than responding to everyone's emails individually I wonder if you would mind
if I tried to address them all in this one email.
As I said I am 28 with SB myelomeningocele at L4, closed at birth and a
VP shunt implanted about 10 days later. I have had 20 surgeries so far.
Only 3 of which were shunt related (the implant and 2 revisions, the last one
being over 18 yrs ago.) and for that I feel extremely fortunate. I walk with
AFO's and forearm crutches and use a wc for certain things.
I am very independent, I am capable of doing most things myself,
including cleaning, laundry, cooking, shopping etc. I think along with being
fortunate that dispite having the most severe form of SB I am very high
functioning I owe a lot of my feeling of independence to the way my parents
raised me. They never took for granted that I couldn't do things but let me
try things to see what I could do and then encouraged me to do as much as
possible myself. Modifications were never made to my home. In fact, until
about 8 months ago there was only 1 bathroom in the house and it was on the
first floor and my room is on the 2nd floor. I only got a bathroom upstairs
because I begged for it after going through Irritable Bowel Syndrome for 2
yrs! You may think that my parents are terrible people but trust me, they're
not. It was just that they couldn't afford to do all that work. The only
thing I don't do is drive and that's more a money situation than anything. I
have lived on my own in a regular 2nd floor apt. I moved out shortly after
my 20 birthday but moved back home a year later when my lease was up to save
$. I do pay $200 rent but that includes everything except toiletries and
long distance phone calls.
I can REALLY relate to the problem of UTI's. I have had them almost
constantly for the past 16 yrs. I was diagnosed with reflux as a toddler and
had 2 ureter re-implantation surgeries (at 3 and 5 yrs of age) to correct
this problem. Both procedures were unsuccessful and the reflux continued.
At the age of 17 I was told my left kidney (the one refluxing) had less than
2% function. 7 1/2 yrs later that kidney had to be removed as the infection
it was creating and attracting went septic, that is to say, the infection was
now throughout my entire bloodstream. I just completed a slew of tests on my
one remaining kidney. I had an ultrasound in Feb. which indicated
pyelonephritis which put me in a total panic! The Drs. thought I had reflux
but all the tests show negative results for reflux. The Drs. think my kidney
was swollen due to bad chronic UTI's. (Here we go again!) I, like some of
you I heard from, am going through the process of trying to get enough
catheters to use a sterile one each time. With my history I would think it
would be hard to say no, but we'll see. After this scare if they say no I'm
going to hit the roof!
As far as bowel management I am doing the best I can. Up until 2-3 yrs
ago I had very few problems. I remember when I was little my Mom giving me
these chocolate sprinkle things on ice cream and then setting me on the
commode and helping me by manually evacuating my bowel while I bore down and
pushed. But that was only before I was old enough to start school. I have
never since then had to use a bowel program. About 2 yrs ago, after
suffering through alternating bouts of constipation so bad I wouldn't go for
days, and diarrhea so bad I wouldn't have any warning and couldn't leave my
house, I was given test after test that came up negative so the only thing
left was IBS. It is an ongoing struggle. I have concluded there are a few
things that if eaten are sure fire ways to cause diarrhea. Ex.-corn in any
form, but on the cob is especially cruel, nuts, and seeds, Chinese food,
which I crave almost daily. I love it, but it doesn't love me! I try to
stay away from these as much as possible. I also know from experience that
stress plays a huge role. If I'm stressed out, look out 'cause it's gonna'
be ugly!
Do I think it would be helpful to join groups and assoc.? I think it is
definitely worth investigating. I know from my personal experience of
growing up not knowing many kids at all with any kind of disability, let
alone MY disability that it can be very isolating. My way of dealing with it
was to try to relate to classmates and friends on levels other than
disability and ignore that part of me. That made things easier when I was
with them but then harder in later life when I was exposed to others with SB
as I did not see myself as being "one of them." But by then when I was with
able-bodied people I also knew I was not "one of them" either. I still
struggle with this today. As a person with a disability but one that is so
high functioning I feel stuck in the middle. Like I don't fully identify or
fit in with either sector of the population. I thank God every day for the
abilities I have but wonder if it wouldn't be easier in some ways if I was
more affected by my disability. I have been treated by my family as if I'm
just like everyone else, I just do things a little differently, to living in
a society that sometimes treats people with a physical disability as if they
are mentally deficient as well (an assumption that I can assure you, is
utterly absurd!)
Needless to say, getting older doesn't necessarily make things easier.
The challenges of youth are replaced by the many and diverse challenges of
adulthood. I am just one of many just trying to do the best I can on a day
to day basis.
Sincerely,[Unable to display image]
Nanette
PS Here's a picture if anyone is like me and likes to put a face to a
screenname.

Stacy - I belong to another e.group - there are parents there that use magic
bullets. Do you mind if I forward your letter to them?
Tui Ussher
New Zealand

Danell,
My daughter had has several occurances with the belly pain..I do not
think these are just in their mind. Sometimes if Valerie has drank
an extra lot, before next time to cath..she complains of pain.But the
thing that scares me the most is when she was 3, she had a bladder
augmentation..and infection set up from this surgery, and she got
peritinitis ( very deadly --blood poisoned from bacteria)and she had
this for a few days...but because she has no sensation from the waist
down..we almost did not catch this in time. But I knew something was
terribly wrong when she was crying and complaining constantly from
the belly pain..for she does not complain more than necessary. She
is a real fighter. Any way, she was hospitalized for three months of
this, and almost did not come out at all. But after trasfusions,
more tests, and surgeries..she came home 3 days before christmas that
year. I think this may have resulted from some of negligence on
health provider's part. I never got an answer on how exactly she got
this. Has anyone else been through this? My neurosurgeon said
Valerie was written up in the medical journals for surviving..Her
chances of making it through were only about 10% in the beginning.
Also, because of the infection in her stomach, they had to remove her
shunt from her stomach and gave her a v/a shunt, which now drains in
her heart ..this scares me too..much more dangerous than a v/p
shunt. Any one else have one of these?
Well, friends...I apologize for my rambling..spina bifida is so
different in each case...and I am thankful we can learn from each
other.
Stephanie..mom of val..6 yrs..
oh yeah...w/c is for wheelchair

Take a look at message #156 for the magic bullet info!! It has been
working well for our 8 yr old daughter. Good luck!
Diane
--- In Livingwithspinabifida@egroups.com, "Stacy Jaeger"

Hi everyone. I hope you don't mind me answering and or responding to all at
once. I am on daily digest so it is easier to talk this way.
Stacey, my daughter kayla is four yrs. also. She has lipomeningocele wich
is a tethered cord that she had surgery on at two months of age. Until now
she hasn't had any problems and you wouldn't know she has sb unless we told
you. She has had two UTI's in four yrs. One was recent. She has been
having "accidents" more and more frequently so we had some tests done to see
if she has any retethering or new problems with bowel/bladder control.
She has slept through the night since two weeks of age however she is
restless sleeper. She walks in her sleep sometimes but not as often as she
used to.
We have episodes of belly pain. She was hospitalized for two weeks last
winter for severe belly pain that was never diagnosed. They ran every test
there is and came up with nothing. Finally, the doc. said maybe it was
psychological. Well, I guess it could be but everyone agreed that her
behavior signaled real pain. Who knows? it went as mysteriously as it
came. She had been dehydrated and had a fever, some vomiting. Nothing that
added up though.
Anyway, the point is that belly pain is something she complains of often.
Once in awhile she says her back hurts.
I have to wait until Sep. 11th for the test results from MRI and formal
urodynamics.
Danell who is holding her breath!

My name is Stacy and I have a son, Travis, who was born with sb. To look at
him you would never know. He is 4 now and is starting to worry about people
seeing him in a diaper. The only problems we are having is bladder/bowel
incontinence. We saw our urologist yesterday at clinic and he wants us to
start using 'magic bullet' suppositories. He told me I can buy them myself
direct from a medical company or I can ask my pharmacist to find them for
me. Now for my question: Does anyone have a good source for these? Does
anyone have a similar case to ours? Does it work?
Stacy
plaq.tow@...

Hi Annie, Thankfully we don't have any problems with sleep. Are you
assuming the hospital experience (the routine of taking temperatures, etc.
during the night) has caused this? Aaron was in hospital close to 5 months
from birth but absolutely no problems since.

Hi I just joined this list and my name is Beth. I have sb and use a w/c
full time. I have re-used washed catheters all my life. I went through a
period a couple of years ago where I had a lot of UTI's. But, I haven't had
any now for almost 2 years. I don't take any antibiotics. So, I think if
you're careful washing catheters can be effective for some people. But, if
it doesn't/isn't working for your child and he/she is getting many uti's I'd
definitely push for single use catheters and see if it helps. ~Beth

Hi all!
I was wondering if any of you with little SB kids or even those of you
with SB have had any problems with sleep. Triona (2 1/2) "wakes"
repeatedly during the night often screaming and crying. I've talked to
a friend who's son was also hospitalized as an infant (for other
reasons) and he had a similar problem, finally growing out of it at
about age 4. Noone on the SB babies list had a similar problem, but Tri
was hospitalized a bit longer than most of them. She had a shunt
infection two weeks after coming home the first time so she was in the
hospital for a total of two and a half months. Triona also talks and
laughs in her sleep. Please let me now if any of you have had a similar
experience and if you happened upon any solutions...I'd really love to
get a little more sleep myself! : )

Well, I guess we are the only ones in the list that wash catheters
and reuse them. Valerie gets cathed 3 times a day and has not had
but 2 uti's in the last 3 years. I just use them and wash them with
some antibacterial soap with triclosan and some times I will set them
in the refrigerator. But after the one day, I dispose of that one.
Now about bowel functions..she goes on her own about every 2-3 days
and we do not follow any special regimen..but i would like some
recommended..something that would not be too difficult for a 6 yr
old. Have tried laxatives..but do not on any kind of regular basis.
I know I need t