Sherry I am in the same situation you are. I'm just found out about
your e-mail and I would like to know if you already got some
suggestions about your problem. I am a school teacher also and I am
thinking about enrolling my son soon here. Please let me know what
you found out. My situation is like yours. I am surprised.

Yacqueline

--- In sbaofnc@yahoogroups.com, "Sherry Thurman" <thurman@...> wrote:
>
> Well the time is near my son John will be going to Kindergarten!
The good thing is I will be teaching at the same school that he will
be at.  I need advice!  He is not cathed and he wears diapers /
goodnites.  I have been working on a bowel program and he has been
consistent on most days.  Do you allow him to go to the restroom
with the class and manage on his own and if he needs to be changed
he can come and get me or do I just set a schedule for him to use
the private bathroom and I meet him there?  What have others done
who have children that are not cathed yet?  I don't want him to be
dependent on me, but I want him to feel comfortable as he starts
school.  Background info:  He walks with braces but has good balance
and can pull down clothes and pull them up etc.  He had not been
telling be when he has to use the bathroom or when he has a bowel
movement.  I get upset because I think he plays me because he may
not be able to feel it, but he should be able to smell!  Has other
parents experienced this and if so when did your child tell you they
were wet or had a bowel movement?  I feel so fortunate to be able to
be at the same school to ensure he is well taken care of but I don't
want to hold him back.  I have never treated him differently!  Also,
do any of you have a toileting plan or a medical plan in place for
your child?  If so could you share?
>
> Sherry
> Mom to John will be 5 on 7/28.  Lesion S1, walking, running, not
cathed, shunt.  Leann 9 bright and loves her brother, also mothers
him!
>
> [Non-text portions of this message have been removed]
>

Sherry,



My son just turned 11yrs old.  We used to do that also, but it was very
awkward doing it that way.  He had what is called a MACE procedure done
about a yr and half ago.  Basically, (if I remember correctly) they pull the
colon to the skin and leave a hole for a catheter to be inserted in order to
flush him out.  Thankfully it worked out so the hole is in his belly button,
so no additional scaring or extra holes.  So when it is time to flush out,
he inserts the catheter into his belly button and I will assist him in
pushing the water mixed with table salt into the catheter.  Occasionally,
his 6yr old brother will help with the flushing out.  In the beginning we
flushed out every day.  But once his body was on a routine we started just
every other day.  It was a great help, but occasionally he will have an
accident.  We have to be careful what he eats.  Also in the winter, when all
the different stomach bugs are going around we may flush out every day for a
few days to make sure he doesn't have an accident.  If you would like more
details please let me know and I can get them.  Any more questions please
let me know.



Keith, my son, has 2 younger brothers and a younger sister, none of which
have SB.  If anyone would every like to get together please let me know.
Kevin@...

We live in Nashville, NC about 40mins east of Raleigh of HWY 64.



Kevin Jones



From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
Sherry Thurman
Sent: Monday, July 30, 2007 5:20 PM
To: sbaofnc@yahoogroups.com
Subject: [SBAofNC] Bowel Program



My son's doctor just suggested that we use a rectal syringe to clean out our
son. He suggested using tap water and table salt. Has anyone else used this
method and was it successful? Also, once you put the water solution in how
long before did the bowel movement take place. I want to make sure I know
what I am doing BEFORE I do it! I don't want to freak him out and I want him
to be prepare.

Thanks,
Sherry





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

I have a 26 year old brother with SB.  When he was a teenager, we used to have
to help him with his.  It was very uncomfortable for him and the person
administering the syringe.  Also, he was on the toilet for sometimes a few hours
cleaning out.  I guess there really is no other way unless they take a laxative.
That is what he does now that he is older.

Sherry Thurman <sthurman@...> wrote:          My son's doctor just
suggested that we use a rectal syringe to clean out our son. He suggested using
tap water and table salt. Has anyone else used this method and was it
successful? Also, once you put the water solution in how long before did the
bowel movement take place. I want to make sure I know what I am doing BEFORE I
do it! I don't want to freak him out and I want him to be prepare.

Thanks,
Sherry

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







Erica


---------------------------------
Choose the right car based on your needs.  Check out Yahoo! Autos new Car Finder
tool.

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

I will be out of the office starting  07/28/2007 and will not return until
08/06/2007.

I will respond to your message when I return. If this is regarding Pompe
disease, please contact Stephanie DeArmey, PA-C (919)681-1946.
If you have any other immediate questions or concerns, please contact our
main office at (919) 684-2036 .
Joanne

My son's doctor just suggested that we use a rectal syringe to clean out our
son.  He suggested using tap water and table salt.  Has anyone else used this
method and was it successful?  Also, once you put the water solution in how long
before did the bowel movement take place.  I want to make sure I know what I am
doing BEFORE I do it!  I don't want to freak him out and I want him to be
prepare.

Thanks,
Sherry

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

Thanks for the help.  She was an antibiotic for a UTI.  I'm glad to hear that it
does take a while to get things back to normal.  My little girl is going to
teach me a new meaning of patience.

   Marie


---------------------------------
Fussy? Opinionated? Impossible to please? Perfect.  Join Yahoo!'s user panel and
lay it on us.

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

My son is 8, so much older. We also use Miralax/Glycolax. He recently had a
surgery, appendicitis, and is now recovering. It is difficult getting that
bowel movement management back after a whole week being off it.

Also, Did your daughter take antibiotics and that is what is causing the
problem in her bowel? I know yogurt and Probiotics can help get the bowel
flora back to normal after antibiotics, but not sure if those are right for
a 6 month old.

Can you look for a doctor that has a more holistic approach to medicine and
healing? This kind of doctor does not just use RX medicines, but looks at
the whole health of the body to see what your daughter needs.

I hope that there is someone else on the list who has a young one with
experience.

Blessings, Mari

well, the nurse helped me a little bit.  and wearing underwear over it  is a
must. just let him do his thing, but if he needs help, tell him it's okay  if
the nurse helps.  make sure he has a good relationship with the  nurse.



************************************** See what's free at http://www.aol.com.


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

Timothy,

Thank you for your response!  It helps to hear from someone who has lived it. 
So do you think I should let him try going to the bathroom on his own?  I know
he is already self conscious I have bought him real underwear that comes over
his goodnite so other kids can not see his "diaper".  Were you ready to handle
the bathroom at Kindergarten, or did someone always help you during that time? 
Thanks again, I will always worry about him and I want to make sure I do my best
to help him!  Good luck with your surgery!

Sherry
   ----- Original Message -----
   From: timothy
   To: sbaofnc@yahoogroups.com
   Sent: Monday, July 02, 2007 7:17 AM
   Subject: [SBAofNC] Re: School Bathroom Suggestions


   hi, Sherry, my name is Timothy. I bet it's driving you mad having to
   worry about this situation.

   I will be 23 this thursday, and I also have Spina Bifida (I can walk,
   too). I know the scary words "alone at school" all too well. I
   remember in my kindergarten class, the assistant teacher would send
   me the nurses office to change the undergarment (Goodnites) several
   times during the day. My supply was kept in the nurses offices, or
   sometimes i kept it in my bookbag. As the years progressed, the
   teachers i had didn't do that, but rather let me leave the classroom
   at anytime to do what i had to do.

   Having said that, accidents did happen. When they did, that's when
   my classmates began the heckling and teasing (i.e. calling me "diaper
   boy"). To make things a little worse, when i started my growth
   spurts, the bones and tendons in my feet didn't grow correctly. I
   started to limp, and ultimately, my achilles were so tight that i was
   on tiptoe all the time. And remained like that for years because my
   parents had the attitude that i was tough enough to overcome, so i
   never went to specialists (which is dire if you have SB).

   By the way, up to this point, I had lived in the Philippines, Japan,
   California, and Hawaii because of my military father.

   Okay, time passes. My dad retires, and we move to NC (where i live
   now). Let me tell you about high school. My dad put me through
   Catholic schools since 7th grade. The catholic high school i went to
   comprised of children of wealthy backgrounds. That alone made things
   easier on me. Catholic school kids typically are more sympathetic,
   but most pretty much understood that things happen to people. They
   would ask about why I walked incorrectly, but the indoor plumbing
   issue never arose. I like to think no one knew, but I'm satisfied
   with the fact that it never came up. I kept my supply in my bookbag
   (2 a day was enough), and I had access to the teachers' single
   restroom facilities. It worked out well.

   Since I've graduated, I now have a job in sales, which is still
   tricky, but i've started the process of completeing what my parents
   never started. I had major ortho. surgery on my feet, have one more
   in september, and I'm in the process of scheduling a an ileostomy
   bladder surgery for incontinence.

   So, a word of advice from an adult who has been through the pains of
   SB, just make sure his supply is hidden, and make sure if it needs
   refreshing, refresh it. take care.
   Timothy

   --- In sbaofnc@yahoogroups.com, "Sherry Thurman" <thurman@...> wrote:
   >
   > Well the time is near my son John will be going to Kindergarten!
   The good thing is I will be teaching at the same school that he will
   be at. I need advice! He is not cathed and he wears diapers /
   goodnites. I have been working on a bowel program and he has been
   consistent on most days. Do you allow him to go to the restroom with
   the class and manage on his own and if he needs to be changed he can
   come and get me or do I just set a schedule for him to use the
   private bathroom and I meet him there? What have others done who
   have children that are not cathed yet? I don't want him to be
   dependent on me, but I want him to feel comfortable as he starts
   school. Background info: He walks with braces but has good balance
   and can pull down clothes and pull them up etc. He had not been
   telling be when he has to use the bathroom or when he has a bowel
   movement. I get upset because I think he plays me because he may not
   be able to feel it, but he should be able to smell! Has other
   parents experienced this and if so when did your child tell you they
   were wet or had a bowel movement? I feel so fortunate to be able to
   be at the same school to ensure he is well taken care of but I don't
   want to hold him back. I have never treated him differently! Also,
   do any of you have a toileting plan or a medical plan in place for
   your child? If so could you share?
   >
   > Sherry
   > Mom to John will be 5 on 7/28. Lesion S1, walking, running, not
   cathed, shunt. Leann 9 bright and loves her brother, also mothers
   him!
   >
   > [Non-text portions of this message have been removed]
   >





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

hi, Sherry, my name is Timothy.  I bet it's driving you mad having to
worry about this situation.

I will be 23 this thursday, and I also have Spina Bifida (I can walk,
too).  I know the scary words "alone at school" all too well. I
remember in my kindergarten class, the assistant teacher would send
me the nurses office to change the undergarment (Goodnites) several
times during the day.  My supply was kept in the nurses offices, or
sometimes i kept it in my bookbag.  As the years progressed, the
teachers i had didn't do that, but rather let me leave the classroom
at anytime to do what i had to do.

Having said that, accidents did happen.  When they did, that's when
my classmates began the heckling and teasing (i.e. calling me "diaper
boy").  To make things a little worse, when i started my growth
spurts, the bones and tendons in my feet didn't grow correctly.  I
started to limp, and ultimately, my achilles were so tight that i was
on tiptoe all the time. And remained like that for years because my
parents had the attitude that i was tough enough to overcome, so i
never went to specialists (which is dire if you have SB).

By the way, up to this point, I had lived in the Philippines, Japan,
California, and Hawaii because of my military father.

Okay, time passes.  My dad retires, and we move to NC (where i live
now).  Let me tell you about high school.  My dad put me through
Catholic schools since 7th grade. The catholic high school i went to
comprised of children of wealthy backgrounds. That alone made things
easier on me.  Catholic school kids typically are more sympathetic,
but most pretty much understood that things happen to people.  They
would ask about why I walked incorrectly, but the indoor plumbing
issue never arose. I like to think no one knew, but I'm satisfied
with the fact that it never came up.  I kept my supply in my bookbag
(2 a day was enough), and I had access to the teachers' single
restroom facilities. It worked out well.

Since I've graduated, I now have a job in sales, which is still
tricky, but i've started the process of completeing what my parents
never started.  I had major ortho. surgery on my feet, have one more
in september, and I'm in the process of scheduling a an ileostomy
bladder surgery for incontinence.

So, a word of advice from an adult who has been through the pains of
SB, just make sure his supply is hidden, and make sure if it needs
refreshing, refresh it. take care.
                                           Timothy






--- In sbaofnc@yahoogroups.com, "Sherry Thurman" <thurman@...> wrote:
>
> Well the time is near my son John will be going to Kindergarten!
The good thing is I will be teaching at the same school that he will
be at.  I need advice!  He is not cathed and he wears diapers /
goodnites.  I have been working on a bowel program and he has been
consistent on most days.  Do you allow him to go to the restroom with
the class and manage on his own and if he needs to be changed he can
come and get me or do I just set a schedule for him to use the
private bathroom and I meet him there?  What have others done who
have children that are not cathed yet?  I don't want him to be
dependent on me, but I want him to feel comfortable as he starts
school.  Background info:  He walks with braces but has good balance
and can pull down clothes and pull them up etc.  He had not been
telling be when he has to use the bathroom or when he has a bowel
movement.  I get upset because I think he plays me because he may not
be able to feel it, but he should be able to smell!  Has other
parents experienced this and if so when did your child tell you they
were wet or had a bowel movement?  I feel so fortunate to be able to
be at the same school to ensure he is well taken care of but I don't
want to hold him back.  I have never treated him differently!  Also,
do any of you have a toileting plan or a medical plan in place for
your child?  If so could you share?
>
> Sherry
> Mom to John will be 5 on 7/28.  Lesion S1, walking, running, not
cathed, shunt.  Leann 9 bright and loves her brother, also mothers
him!
>
> [Non-text portions of this message have been removed]
>

Well the time is near my son John will be going to Kindergarten!  The good thing
is I will be teaching at the same school that he will be at.  I need advice!  He
is not cathed and he wears diapers / goodnites.  I have been working on a bowel
program and he has been consistent on most days.  Do you allow him to go to the
restroom with the class and manage on his own and if he needs to be changed he
can come and get me or do I just set a schedule for him to use the private
bathroom and I meet him there?  What have others done who have children that are
not cathed yet?  I don't want him to be dependent on me, but I want him to feel
comfortable as he starts school.  Background info:  He walks with braces but has
good balance and can pull down clothes and pull them up etc.  He had not been
telling be when he has to use the bathroom or when he has a bowel movement.  I
get upset because I think he plays me because he may not be able to feel it, but
he should be able to smell!  Has other parents experienced this and if so when
did your child tell you they were wet or had a bowel movement?  I feel so
fortunate to be able to be at the same school to ensure he is well taken care of
but I don't want to hold him back.  I have never treated him differently!  Also,
do any of you have a toileting plan or a medical plan in place for your child? 
If so could you share?

Sherry
Mom to John will be 5 on 7/28.  Lesion S1, walking, running, not cathed, shunt. 
Leann 9 bright and loves her brother, also mothers him!

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

Marie,

   My daughter Emily is 4 yrs. old now. She's taking Glycolax everyday(same thing
as Miralax) and it works pretty good on her, we also let her drink a lot of
water, and she eats more foods with a lot of fibers. Hope this helps!

   Cynthia
   Monroe,NC
delgadm78 <delgadm78@...> wrote:
           My daughter is 6 months old and has been having trouble with
constipation. We were told to give her juice, miralax and enemas if
needed. Figure out what works for her. . . all was working fine until
she was treated for a UTI. NOw she has watery loose stools. I haven't
given any miralax once this started, but now I'm concerned about the
smelly watery stools. The nurse I talked to on the phone thinks she
might be impacted so I gave an enema, but 2.5 hours later still no
bowel movement and for the most part she is still acting like she is
fine and doesn't seem to be in pain.

What have you found to work with bowel management? It is so hard since
she can't tell me what her tummy is feeling like. . .

Thanks.
Marie






---------------------------------
Don't get soaked.  Take a quick peak at the forecast
  with theYahoo! Search weather shortcut.

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

My daughter is 6 months old and has been having trouble with
constipation.  We were told to give her juice, miralax and enemas if
needed.  Figure out what works for her. . . all was working fine until
she was treated for a UTI.  NOw she has watery loose stools.  I haven't
given any miralax once this started, but now I'm concerned about the
smelly watery stools.  The nurse I talked to on the phone thinks she
might be impacted so I gave an enema, but 2.5 hours later still no
bowel movement and for the most part she is still acting like she is
fine and doesn't seem to be in pain.

What have you found to work with bowel management?  It is so hard since
she can't tell me what her tummy is feeling like. . .


Thanks.
Marie

I have medicaid and they help pay through Home Health
but before I turned 21, CSHS (Children's Special
Health Services) helped pay for my diapers.
--- Sherry Thurman <thurman@...> wrote:

> I was wondering if anyone has had success in their
> insurance paying for diapers or incontience products
> for their children with Spina Bifida?  I have State
> Health Plan and they say it does not cover.  Anyone
> else had ins. to pay?
>
> Sherry
>
> [Non-text portions of this message have been
> removed]
>
>




________________________________________________________________________________\
____
Pinpoint customers who are looking for what you sell.
http://searchmarketing.yahoo.com/

I will be out of the office starting  06/15/2007 and will not return until
06/30/2007.

I will respond to your message when I return. If this is regarding Pompe
disease, please contact Stephanie DeArmey, PA-C (919)681-1946.
If you have any other immediate questions or concerns, please contact our
main office at (919) 684-2036 .
Joanne

Of course it will depend on your provider.  However, my own experience  as
well as talking with others, is that most items that are considered non  durable
i.e. they are not a piece of equipment but instead are such things as
diapers, bandages, etc. haven't been covered.

Shelly



************************************** See what's free at http://www.aol.com.


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

I was wondering if anyone has had success in their insurance paying for diapers
or incontience products for their children with Spina Bifida?  I have State
Health Plan and they say it does not cover.  Anyone else had ins. to pay?

Sherry

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

Thank you so much for all the informations that you gave me. I really appreciate
the time that you spent to email me. I will call the numbers that you gave me
Ms. Joanne and I will keep you  posted about my child.

   Cynthia
   Monroe, NC

Joanne Mackey <macke003@...> wrote:

All children in school who need special procedures, medications, monitoring
should have a Individual Health Plan in either incorporated into the 504
Plan or IEP or separately written to address the health needs of the
student. ECAC has outlined the essentials of a plan
Background information, brief medical history, special health care needs,
Psychosocial concerns. Student and family strengths, health care procedures
and interventions, designated personnel who have been trained to assist
child, possible ER information, and review annually or as needed.
Advanced planning is essential and good communications with the school
nurse of someone in administration should be in place.
It is important that you partnership with your schools for a better
education for your child and attention to the details of his/her daily
care.
Joanne

Joanne Mackey, RN, MSN, CPNP
Duke University Medical Center
Division of Medical Genetics
(919)681-1945

"The information contained in this electronic mail transmission contains
confidential information belonging to the sender that is legally
privileged. This information is intended only for the use of the
individual or entity named above. The authorized recipient of this
information is prohibited from disseminating, distributing, or copying this
information. If you have received this information in error please delete
this message, any attachments, and all copies and backups from your
computer and notify the sender immediately by replying to this message or
call 919.668-1100 or 1.800.MED-DUKE."

"cteresausa2003"
<cteresausa2003@y
ahoo.com> To
Sent by: sbaofnc@yahoogroups.com
sbaofnc@yahoogrou cc
ps.com
Subject
[SBAofNC] 4 yr. old with SB!
05/26/2007 11:45
PM


Please respond to
sbaofnc@yahoogrou
ps.com



Hello everybody!

My child who has a SB will go to school soon. She's being cathed every
3-4 hrs. everday. I am a working mom and I don't know what to think
right now because of all these questions in my mind:

1. Who will cath my child in school?
2. Who will assist her while walking or riding a bus?
3. Who will assist her during lunch or snacks?
4. Is there a program to help my child in school?
5. Who will watch her after school while I'm still at work?
6. Is there a daycare or childcare for SB children?
7. Is there a financial resources that I can get?

Please share some info if you have. I really need help right now!

Thanks,
Cynthia

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






---------------------------------
Yahoo! oneSearch: Finally,  mobile search that gives answers, not web links.

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

All children in school who need special procedures, medications, monitoring
should have a Individual Health Plan in either incorporated into the 504
Plan or IEP or separately written to address the health needs of the
student.  ECAC has outlined the essentials of a plan
Background information, brief medical history, special health care needs,
Psychosocial concerns. Student and family strengths, health care procedures
and interventions, designated personnel who have been trained to assist
child, possible ER information, and review annually or as needed.
Advanced planning is essential and good communications with the school
nurse of someone in administration should be in place.
It is important that you partnership with your schools for a better
education for your child and attention to the details of his/her daily
care.
Joanne


Joanne Mackey, RN, MSN, CPNP
Duke University Medical Center
Division of Medical Genetics
(919)681-1945

"The information contained in this electronic mail transmission contains
confidential information belonging to the sender that is legally
privileged.  This information is intended only for the use of the
individual or entity named above.  The authorized recipient of this
information is prohibited from disseminating, distributing, or copying this
information.  If you have received this information in error please delete
this message, any attachments, and all copies and backups from your
computer and notify the sender immediately by replying to this message or
call 919.668-1100 or 1.800.MED-DUKE."



              "cteresausa2003"
              <cteresausa2003@y
              ahoo.com>                                                  To
              Sent by:                  sbaofnc@yahoogroups.com
              sbaofnc@yahoogrou                                          cc
              ps.com
                                                                    Subject
                                        [SBAofNC] 4 yr. old with SB!
              05/26/2007 11:45
              PM


              Please respond to
              sbaofnc@yahoogrou
                   ps.com






Hello everybody!

My child who has a SB will go to school soon. She's being cathed every
3-4 hrs. everday. I am a working mom and I don't know what to think
right now because of all these questions in my mind:

1. Who will cath my child in school?
2. Who will assist her while walking or riding a bus?
3. Who will assist her during lunch or snacks?
4. Is there a program to help my child in school?
5. Who will watch her after school while I'm still at work?
6. Is there a daycare or childcare for SB children?
7. Is there a financial resources that I can get?

Please share some info if you have. I really need help right now!

Thanks,
Cynthia





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

There are several resources available in NC depending on where you live.  A
great resource of information is the Family Support Network 1-800-852-0042
for information from daycares to direct services. Also available is the
Exceptional Children's Assistance Center (ECAC) who has all the information
you would need about what the schools offer, should offer, don't offer
depending on the law and your school system. 1-800-962-6817
Joanne


Joanne Mackey, RN, MSN, CPNP
Duke University Medical Center
Division of Medical Genetics
(919)681-1945

"The information contained in this electronic mail transmission contains
confidential information belonging to the sender that is legally
privileged.  This information is intended only for the use of the
individual or entity named above.  The authorized recipient of this
information is prohibited from disseminating, distributing, or copying this
information.  If you have received this information in error please delete
this message, any attachments, and all copies and backups from your
computer and notify the sender immediately by replying to this message or
call 919.668-1100 or 1.800.MED-DUKE."



              Stormie
              Willingham
              <counselorwilling                                          To
              ham@...>            sbaofnc@yahoogroups.com
              Sent by:                                                   cc
              sbaofnc@yahoogrou
              ps.com                                                Subject
                                        [SBAofNC] Re:4 yr. old with SB!

              05/27/2007 08:21
              AM


              Please respond to
              sbaofnc@yahoogrou
                   ps.com






Those are some excellent questions that I to would like to find some
answers for. My son is almost 2 however I would like to know what my
options are. I will graduate nursing school next fall and would like to
work. I have three other children and living on my husbands income alone
makes for an extremly tight budget. I don't know if there are any programs
that are set up like preschool for special needs children.

---------------------------------
Get the Yahoo! toolbar and be alerted to new email wherever you're surfing.


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





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

Depending on the severity of their SB complications, most daycares/preschools
should take your child. I know that I always went to regular
daycares/preschools, and I am now 38.5 years old and this was before there was
any educational laws that required there not to be any discrimination of
special needs children.   I'm not sure about after school care, as I attended
the same daycares after school hours as I did in summers/on breaks, etc.  
Regarding the restroom issues, keep in mind I do not have a cathing situation, I
have an ostomy which is a very old procedure from the 70's, and I also was at
that time abulatory on crutches, but when I first started attending public
schools in the 4th grade, my teacher paired up a couple of different students
with me to walk with me to the restroom, help me with my lunch tray, etc.  
She then left it up to me to decide which pals I preferred working with the
best, got along best with, etc.   And actually by the time I reached middle
school, I had mostly two assistants, one girl pal that would take me into the
restrooms, and one young man that was in my home room class starting in 7th
grade on up to the 11th grade and he did all my other stuff for me, assist me
with my locker, lunch tray, etc.  Ironically, he and I were born on the same
day and we became like brother and sister all thru our school years.   You
will need to write out the details of what your child needs in their IEP once
they start school, but beyond that, I think you, the teachers, and most
importantly, your child should work together to give your child the best
educational experience possible.  Let your child dictate as much as possible
after all, they are the ones whose body it is and who has to ask for assistance
for 8 hours a day.   

Shelly 


 


-----Original Message-----
From: Stormie Willingham <counselorwillingham@...>
To: sbaofnc@yahoogroups.com
Sent: Sun, 27 May 2007 8:21 am
Subject: [SBAofNC] Re:4 yr. old with SB!






Those are some excellent questions that I to would like to find some answers
for. My son is almost 2 however I would like to know what my options are. I will
graduate nursing school next fall and would like to work. I have three other
children and living on my husbands income alone makes for an extremly tight
budget. I don't know if there are any programs that are set up like preschool
for special needs children.

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





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

Those are some excellent questions that I to would like to find some answers
for.  My son is almost 2 however I would like to know what my options are.  I
will graduate nursing school next fall and would like to work.  I have three
other children and living on my husbands income alone makes for an extremly
tight budget. I don't know if there are any programs that are set up like
preschool for special needs children.

---------------------------------
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Hello everybody!

My child who has a SB will go to school soon. She's being cathed every
3-4 hrs. everday. I am a working mom and I don't know what to think
right now because of all these questions in my mind:

1. Who will cath my child in school?
2. Who will assist her while walking or riding a bus?
3. Who will assist her during lunch or snacks?
4. Is there a program to help my child in school?
5. Who will watch her after school while I'm still at work?
6. Is there a daycare  or childcare for SB children?
7. Is there a financial resources that I can  get?

Please share some info if you have. I really need help right now!

Thanks,
Cynthia

Hi.  I think you called me about moving a couple of weeks ago.  I live in
the W-S area.  My email is susancollins@... if you have questions.

Susan



   _____

From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
deefaith2005
Sent: Thursday, May 03, 2007 11:04 PM
To: sbaofnc@yahoogroups.com
Subject: [SBAofNC] moving to raleigh or Charlotte area



Hello,

I have a 6 year old son. with spina Bifda. (he uses crutches and
attends public school) I'm plaaning on relocating from NJ to to NC.
Which area Raleigh or Charlotte is better . I'm looking for an area
where ther eis good meidcal care nd various service(summer camp, before
and after school care, Medicaid(CAP). Is there a long waiting list for
medical care services? are there spina Bifda clinics? currently he gos
to CHOP in PA.





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

Hello,

I have a 6 year old son. with spina Bifda. (he uses crutches and
attends public school) I'm plaaning on relocating from NJ to to NC.
Which area Raleigh or Charlotte is better .  I'm looking for an area
where ther eis good meidcal care nd various service(summer camp, before
and after school care, Medicaid(CAP).  Is there a long waiting list for
medical care services? are there spina Bifda clinics? currently he gos
to CHOP in PA.

My daughter is 3 months old.  She is having chiari II symptoms and
the neurosurgeons take a conservative approach to the decompression,
but they are saying it looks like we will need to go ahead and do
this.  her chiari is around level c3 or c4.  She is aspirating her
food, stridor is more apparent and more fequent.  her vocal cords
were checked a few weeks ago and they were normal, ENT will look at
them MOnday to see if there is a change and a sleep study has also
been ordered.



I haven't done nearly enough research on this, but it is also hard
to find info about chiari II.  If anyone has had any experience with
this and has some tips/advice I'd appreciate the help.



Thank you,

Marie

How often do most doctors (and parents) agree is appropriate for doing
the CT scans and full xray series to check the status of the shunt? I
was told it should be done every one to two years. Has anyone heard
anything different?

they have these really neat chairs that help them sit up by themselves, they are
foam covered with plastic.  Also there are walkers avialable when your child can
start getting around by himself.  I got a handicap card for my car when I have
my son with me because he was so large to carry.  Ask his physical therapist
they have a bunch of good ideas, and there is a therapist at the mylo clinic
that has given us some stuff that no one else knew about.

Stormie <counselorwillingham@...> wrote:          Since asking my original
question about clinics and my
dissatisfaction about Duke, I have gotten many wonderful
suggestiions. I did decide to give Duke one more chance and I spoke
dircetly with the coordinator of the clinic and voiced my concerns.
After having done this, I have been given a much higher standard
ofcare and my son has had appoinments made thata re relevant to his
needs at this point in time. I would like to know of you parents
who have young SB children, how do you assist your toddler in his
mobility needs? My son is 13 months old but is the heigt and weight
of a two year old. He is getting to a point where he is wanting to
explore and cannot get around because he is such a large boy. I
carry him here and there to expore but he is getting frustrated and
bored. He can scoot himself backwards while prone but still canot
roll himself from tummy to back or back to tummy. I would
appreciate any suggestions to assist in this matter!--

- In sbaofnc@yahoogroups.com, "kellie_moors" <kellie_moors@...>
wrote:
>
> As a pediatric nurse and the mother of a two year old with spina
> bifida I have had experiences with most of the hospitals and
> specialists in the eastern Nc area. I delivered my son at
Duke,even
> going out of network with my insurance company to do it. UNC was
in
> network,but after finding out they had been dropped from the MOM's
> study, and the fact that the pediatric neurosurgeon wouldn't meet
me
> before performing major surgery on my unborn child, I choose
Duke.
> And UNC is currently working without a PEDIATRIC neurosurgeon.
The
> have neurosurgeons, but as any specialist will tell you pediatrics
is
> a whole new world. They are working on getting one back, but it
has
> been over a year from what my sources say. Keep in mind that you
> will never hear good things about any medical situation, and no
> matter your choice is only as good as the information that you
have
> avialble. no matter what you choose, it's your child and your
> responsiblity to be their advocate. If you don't feel the doctor
is
> doing the best thing for them, tell them or find another doctor
who
> will listen. When it comes to children and their health the only
> stupid question is the one not asked.--- In
sbaofnc@yahoogroups.com,
> cynthia teresa <cteresausa2003@> wrote:
> >
> > Your absolutely right Lisa. My child has a regular check-up.
They
> do MRI's (Cranial and spine) on her regularly, and other test
> concerning about her SB. Thanks for sharing about your friend, it
> really helps new parents with SB. Each child is different from
each
> other, so, parents really need to be careful in their decision
when
> it comes to their children.
> >
> > Lisa <princess06770@> wrote: I am sorry I have to
> respond to this. I had a friend that is no longer
> > with us because of a doctor not at Duke but another hospital
that
> did
> > not do a surgery on a patient that was NOT problems but the
doctor
> did
> > not find anything wrong with my friends shunt and it was indeed
her
> > shunt. She had a stroke and was under 35 years old. She was in
> college
> > about to graduate and was going to be a Psychologiest. She was
> having
> > headaches but the doctor told her it was NOT HER SHUNT and now
to
> day
> > she is 6 FOOT UNDER So please for your child even if she is not
> having
> > problems please have her checked out to see if she needs a shunt
> > because she could really need one and its just not showing up
and if
> > your child has never had a shunt she or he may not know what it
> feels
> > like to be having a headache that requires a shunt. I dont want
to
> see
> > you loose your child because of a shunt malfunction or a wished
I
> had
> > put a shunt in or she or he would still be with us today. I also
> want
> > to add if you dont get a shunt in soon enough it could cause your
> > child to be mentally retarded. I am sorry about the way I put
this
> but
> > I have lost a great deal of friends because of surgery or one
thing
> or
> > another because it was not done soon enough. I am an adult with
> spina
> > bifida and I have been through alot myself. I also know the
> importance
> > of seeing a doctor regularly and making sure my shunt is work
> > correctly among other things in the body with a person with
spina
> bifida.
> >
> > --- In sbaofnc@yahoogroups.com, cynthia teresa <cteresausa2003@>
> wrote:
> > >
> > >
> > >
> > > I also had a bad impression about some doctors in Duke. My
child
> > also have a Spina Bifida, she will turn 4 this coming May 2007.
When
> > she was 2 months old, her doctor in Carolinas Medical Center in
> > Charlotte, NC want to do a Cranial Decompression because he said
> that
> > she has a Chiari Malformation II, so, we asked for a second
opinion
> > from Duke, sent my child's records and CT Scan and MRI's, to
make
> the
> > story short, the neurosurgeon there said that we need to let our
> > doctor here in Charlotte do the surgery As soon as possible or
else
> it
> > will damage my child's brain etc (he didn't even asked to see the
> > baby, he just decided to say do the procedure because he said
that
> my
> > child's doctor is known for being a good doctor). Anyway, we did
not
> > do what they want to do because we feel that the child doesn't
need
> it
> > because she's not symtomatic, even if she has it. Until now,
she's
> ok.
> > She's one of the smartest children in her school (She's in Pre-
K).
> > They even want to put a shunt
> > > on her when she was 10 days old because she's a SB baby but we
> > didn't let them put one, until now she's still shunt free.
> > >
> > > Sometimes, as a parent, we also need to think slowly and won't
let
> > what the doctors want to do to our children. Yes, they have a SB
it
> is
> > possible they need the surgery right away but sometimes if we
know
> > that the child is not symtomatic, we need to decide and tell the
> > doctor that we want to wait a little bit and see how the baby
does,
> > this is what we do to our child.
> > >
> > > Just want to share my experience, just an information for new
> > parent that doesn't know a lot about SB.
> > >
> > >
> > > Thanks,
> > > Cynthia
> > > Emily (L4-L5, cath every 4 hrs. shunt free, walking with a
walker
> > and without walker)
> > >
> > > Charlie Johnson <cmjcbt2@> wrote:
> > > I just noticed your response about Duke's Clinic, we have
> > had an excellent relationship with Duke regarding our daughter's
(6
> > years) issues with Spina Bifida and they have always been
willing to
> > help make sure everything was going okay. I was just curious as
to
> the
> > problems you were having, because that's odd.
> > >
> > > Stormie <counselorwillingham@> wrote: Does anyone know if there
> > is a Spina Bifida Clinic in Greenville NC?
> > > I am presently being seen at Duke's Clinic but quite frankly I
a
> have
> > > been unimpressed with the care he has recieved in comparison
to
> the
> > > care he had when we were in Tn at Vanderbilt's clinic. I have
> heard
> > > that there may be a clinic in Greenville and would like to get
a
> > > contact number to see about having his care transferred there.
> > > >
> > > >
> > > > ---------------------------------
> > > > Sucker-punch spam with award-winning protection.
> > > > Try the free Yahoo! Mail Beta.
> > > >
> > > > [Non-text portions of this message have been removed]
> > > >
> > >
> > > Charlie Johnson
> > > cmjcbt2@
> > >
> > > ---------------------------------
> > > Need a quick answer? Get one in minutes from people who know.
Ask
> > your question on Yahoo! Answers.
> > >
> > > [Non-text portions of this message have been removed]
> > >
> > >
> > >
> > >
> > >
> > >
> > > ---------------------------------
> > > Finding fabulous fares is fun.
> > > Let Yahoo! FareChase search your favorite travel sites to find
> > flight and hotel bargains.
> > >
> > > [Non-text portions of this message have been removed]
> > >
> >
> >
> >
> >
> >
> >
> > ---------------------------------
> > Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call
rates.
> >
> > [Non-text portions of this message have been removed]
> >
>






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

To see a newscast clip, go to www.aucarolinas.org
<http://www.aucarolinas.org/>  and click on Rollin'
<http://www.king5.com/sharedcontent/VideoPlayer/makeASX.php?title=www.king5.
com/ki_022507nwbachamps.wmv&adcontent/king/KeyB>  Bobcat Highlights at NWBA
Prep Nationals  Caitlin McDermott is interviewed, along with Coach Dave
Kiley

Jordan (from Winston-Salem) went to Seattle and played.  Julia Grace didn't
go this year but we hope she has an opportunity to go in the future.  The
team is made up of kids mostly in NC, but a few travel as far as from
Virginia to play.

Way to go, Bobcats!



Susan Collins



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

Since asking my original question about clinics and my
dissatisfaction about Duke, I have gotten many wonderful
suggestiions.  I did decide to give Duke one more chance and I spoke
dircetly with the coordinator of the clinic and voiced my concerns.
After having done this, I have been given a much higher standard
ofcare and my son has had appoinments made thata re relevant to his
needs at this point in time.  I would like to know of you parents
who have young SB children, how do you assist your toddler in his
mobility needs?  My son is 13 months old but is the heigt and weight
of a two year old.  He is getting to a point where he is wanting to
explore and cannot get around because he is such a large boy.  I
carry him here and there to expore but he is getting frustrated and
bored.  He can scoot himself backwards while prone but still canot
roll himself from tummy to back or back to tummy.  I would
appreciate any suggestions to assist in this matter!--





- In sbaofnc@yahoogroups.com, "kellie_moors" <kellie_moors@...>
wrote:
>
> As a pediatric nurse and the mother of a two year old with spina
> bifida I have had experiences with most of the hospitals and
> specialists in the eastern Nc area.  I delivered my son at
Duke,even
> going out of network with my insurance company to do it.  UNC was
in
> network,but after finding out they had been dropped from the MOM's
> study, and the fact that the pediatric neurosurgeon wouldn't meet
me
> before performing major surgery on my unborn child, I choose
Duke.
> And UNC is currently working without a PEDIATRIC neurosurgeon.
The
> have neurosurgeons, but as any specialist will tell you pediatrics
is
> a whole new world.  They are working on getting one back, but it
has
> been over a year from what my sources say.  Keep in mind that you
> will never hear good things about any medical situation, and no
> matter your choice is only as good as the information that you
have
> avialble. no matter what you choose, it's your child and your
> responsiblity to be their advocate. If you don't feel the doctor
is
> doing the best thing for them, tell them or find another doctor
who
> will listen. When it comes to children and their health the only
> stupid question is the one not asked.--- In
sbaofnc@yahoogroups.com,
> cynthia teresa <cteresausa2003@> wrote:
> >
> > Your absolutely right Lisa. My child has a regular check-up.
They
> do MRI's (Cranial and spine) on her regularly, and other test
> concerning about her SB. Thanks for sharing about your friend, it
> really helps new parents with SB. Each child is different from
each
> other, so, parents really need to be careful in their decision
when
> it comes to their children.
> >
> > Lisa <princess06770@> wrote:          I am sorry I have to
> respond to this. I had a friend that is no longer
> > with us because of a doctor not at Duke but another hospital
that
> did
> > not do a surgery on a patient that was NOT problems but the
doctor
> did
> > not find anything wrong with my friends shunt and it was indeed
her
> > shunt. She had a stroke and was under 35 years old. She was in
> college
> > about to graduate and was going to be a Psychologiest. She was
> having
> > headaches but the doctor told her it was NOT HER SHUNT and now
to
> day
> > she is 6 FOOT UNDER So please for your child even if she is not
> having
> > problems please have her checked out to see if she needs a shunt
> > because she could really need one and its just not showing up
and if
> > your child has never had a shunt she or he may not know what it
> feels
> > like to be having a headache that requires a shunt. I dont want
to
> see
> > you loose your child because of a shunt malfunction or a wished
I
> had
> > put a shunt in or she or he would still be with us today. I also
> want
> > to add if you dont get a shunt in soon enough it could cause your
> > child to be mentally retarded. I am sorry about the way I put
this
> but
> > I have lost a great deal of friends because of surgery or one
thing
> or
> > another because it was not done soon enough. I am an adult with
> spina
> > bifida and I have been through alot myself. I also know the
> importance
> > of seeing a doctor regularly and making sure my shunt is work
> > correctly among other things in the body with a person with
spina
> bifida.
> >
> > --- In sbaofnc@yahoogroups.com, cynthia teresa <cteresausa2003@>
> wrote:
> > >
> > >
> > >
> > > I also had a bad impression about some doctors in Duke. My
child
> > also have a Spina Bifida, she will turn 4 this coming May 2007.
When
> > she was 2 months old, her doctor in Carolinas Medical Center in
> > Charlotte, NC want to do a Cranial Decompression because he said
> that
> > she has a Chiari Malformation II, so, we asked for a second
opinion
> > from Duke, sent my child's records and CT Scan and MRI's, to
make
> the
> > story short, the neurosurgeon there said that we need to let our
> > doctor here in Charlotte do the surgery As soon as possible or
else
> it
> > will damage my child's brain etc (he didn't even asked to see the
> > baby, he just decided to say do the procedure because he said
that
> my
> > child's doctor is known for being a good doctor). Anyway, we did
not
> > do what they want to do because we feel that the child doesn't
need
> it
> > because she's not symtomatic, even if she has it. Until now,
she's
> ok.
> > She's one of the smartest children in her school (She's in Pre-
K).
> > They even want to put a shunt
> > > on her when she was 10 days old because she's a SB baby but we
> > didn't let them put one, until now she's still shunt free.
> > >
> > > Sometimes, as a parent, we also need to think slowly and won't
let
> > what the doctors want to do to our children. Yes, they have a SB
it
> is
> > possible they need the surgery right away but sometimes if we
know
> > that the child is not symtomatic, we need to decide and tell the
> > doctor that we want to wait a little bit and see how the baby
does,
> > this is what we do to our child.
> > >
> > > Just want to share my experience, just an information for new
> > parent that doesn't know a lot about SB.
> > >
> > >
> > > Thanks,
> > > Cynthia
> > > Emily (L4-L5, cath every 4 hrs. shunt free, walking with a
walker
> > and without walker)
> > >
> > > Charlie Johnson <cmjcbt2@> wrote:
> > > I just noticed your response about Duke's Clinic, we have
> > had an excellent relationship with Duke regarding our daughter's
(6
> > years) issues with Spina Bifida and they have always been
willing to
> > help make sure everything was going okay. I was just curious as
to
> the
> > problems you were having, because that's odd.
> > >
> > > Stormie <counselorwillingham@> wrote: Does anyone know if there
> > is a Spina Bifida Clinic in Greenville NC?
> > > I am presently being seen at Duke's Clinic but quite frankly I
a
> have
> > > been unimpressed with the care he has recieved in comparison
to
> the
> > > care he had when we were in Tn at Vanderbilt's clinic. I have
> heard
> > > that there may be a clinic in Greenville and would like to get
a
> > > contact number to see about having his care transferred there.
> > > >
> > > >
> > > > ---------------------------------
> > > > Sucker-punch spam with award-winning protection.
> > > > Try the free Yahoo! Mail Beta.
> > > >
> > > > [Non-text portions of this message have been removed]
> > > >
> > >
> > > Charlie Johnson
> > > cmjcbt2@
> > >
> > > ---------------------------------
> > > Need a quick answer? Get one in minutes from people who know.
Ask
> > your question on Yahoo! Answers.
> > >
> > > [Non-text portions of this message have been removed]
> > >
> > >
> > >
> > >
> > >
> > >
> > > ---------------------------------
> > > Finding fabulous fares is fun.
> > > Let Yahoo! FareChase search your favorite travel sites to find
> > flight and hotel bargains.
> > >
> > > [Non-text portions of this message have been removed]
> > >
> >
> >
> >
> >
> >
> >
> > ---------------------------------
> > Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call
rates.
> >
> > [Non-text portions of this message have been removed]
> >
>