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TOPIC TITLE: 2 year old with spina bifida
Created On 6/21/06 12:25 AM
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Just Smile
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6/21/06 12:25 AM
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i have a 2 year old daughter born with spina bifida - L4-L5 region
she has a vp shunt and has had one revision at 8 months
she currently has AFO's and walks with a reverse Kay walker
her fine motor skills are age appropriate and her language and social skills are above average
she has to be cathed 3-4x a day and uses an irrigation medication to keep her free of UTI's
we also give her miralax to help control her bowel issues
i would be interested in meeting other people who have a similar situation
especially those with kids in private/jewish schools
how do you deal with the mobility issues? do you have a shadow? how is the school with your child
also, what about cathing? does a school nurse take care of that
do any of you have goverment assistance in these areas?
i live in calif.
would love to hear from you!

sara
 
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thinkpositive
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8/23/06 12:03 AM
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Hi Sara,
I saw your note a while back and wanted to reply but I was not a member. So here goes.
My daugher has Spina Bifida and is 18 years old. We are from Brooklyn and we have a support group of about 30 frum families. We also have some married women with Spina Bifida (who have B'H healthy children) and some of our children are engaged to be married.
My daughter was born with L4-L5 lesion. She has a VP Shunt, wears AFO's and attended regular school.
Some of the children in our group had a shadow for bathrooming issues. We do get assistance from the Board of Education, for therapies and nurses if necessary. My daughter had a nurse but by the second or third grade she could cath herself but still had the nurse get her out of the classroom to make sure she took care of it.
Rachel


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Just Smile
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9/8/06 2:42 PM
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hi rachel,
thanks for responding to my post
sounds great that you have so much support there.
I don't know one other Jewish (never mind frum) family that has a child with sb
i've been told by doctors that Jewish people have the lowest percentage of sb kids (apparently mexicans/latinos have the most - which there are many of here)
i used to attend a child play group for kids with sb (although no one there was jewish) but now that gov. stopped funding for it
I'm very interested to know about the shadows/aides in school
my daughter is now getting services from regional center (early intervention) and they are going to pay for 5 half days tuition in the frum pre-school where i live (they are a vendor for regional center) and for a shadow 3 half days (mobility, cath, etc.)
i have been told however that to get gov. assistance ina private school once they turn three is very difficult b/c it is turned over to the state and then there is the issue of church vs. state
It is also very encouraging to know that there are married women with sb that have healthy children and that some of your group's kids are engaged - (that was one of the first questions i asked when i found out my daughter had sb - can she get married?)
out of curiosity - i know i'm jumping the gun - what kind of people are the kids/ women married/ engaged to? do they also have sb? does that increase the risk? do they have other issues?
how do the women take care of their homes/families etc.?
also, are there any of you that have more than one child with sb?
my daughter is my third ka'h and iy'h i hope to have more....
does your daughter walk with any assistive device i.e. walker, crutches, etc. - did she ever and grow out of them?
one of the therapist here at the sb clinic in LA told me that even if my daughter could walk unaided (she already does take a couple of steps by herself B'h!!!) i shouldn't let her b/c it will hurt her knees??
have you ever heard of such a thing?
did you ever have any issues such as ADD, behavior issues?
how were things socially in school?
do you have other children and how do/did they deal with things?
were they ever teased in school?
did you ever sit down with your daughter and explain what was wrong and why?

sorry to give you an interrogation i just haven't known anyone to ask these questions to!!
if anything is too personal, i apologize!

good shabbos
if you want you can e-mail me off line at srljs@juno.com

thanks for taking the time to respond
 
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thinkpositive
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5/5/09 8:57 AM
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Hi Sara,
It has been quite some time since I have checked this website. I actually forgot my password but recently tried one that hit it right.
Anyway, let me respond to some of your questions. By the way, I did try to email you a note but you did not respond so I will post it here. You mentioned that you know of no other people where you live that have SB. May I ask you where do you live which area.
We are in Brooklyn, New York, but the families include those in New Jersey, Maryland.
We are able to get many services in the Jewish schools, such as nurse and paras because these children need the help and it is through the board of education. What is the point of a nurse 3x a week, if the child need catherization each day. It does not seem logical. This isn't a gift you are asking for, it is not something extra, it is essential.
Since some time has passed since we communicated, your daughter should be about 5 years old. how is she doing? School and health? How are you and your family doing?
I will wait for your reply before I continue with more info.
Hope you have a great spring and healthy summer.
Rachel


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Just Smile
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6/26/09 1:32 AM
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hi rachel,
great to hear from you again
i never did get your note off line - i'm not sure why
in any case, i'd love to correspond with you more off-line but in a nutshell
everything is going pretty well
my daughter just turned 5 (21 sivan) and she will be starting pre-1-a next year
until now we have been fortunate to have 2x a week therapy through the school system but now that she is starting "kindergarten" there is a different set of rules and unless she attends public school she gets nothing
i spoke to some lawyers about appealing this decision of "FAPE" but i was told that this was the law and it was practically useless to fight it
I understand that in NY you can get great benefits - i live in southern california and here they dont give kids that go to private schools special ed. benefits
b'h she is ka'h very smart and she has been mainstreamed the past three years in pre-school
she will be going to a regular, frum elementery school
we did a big bowel bladder surgery last summer so she is now able to cath independently (with just an adult supervising) and her bowels are also pretty much under control
she is walking using afo's and just learned to ride a tricycle (without straps on her feet)
i have started giving her swimming lessons so perhaps that will take the place of her therapy sessions (it's much cheaper than paying a therapist $100+ an hour)
please send me your e-mail address and i will be in touch with you
ps: are you going to the spina bifida conference this year in florida
my husband and i are going (for the first time) and i'm hoping it will be informative
be in touch
sara
 
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thinkpositive
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9/13/09 2:10 AM
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Hi, It has been couple of months, so glad to see you check in every now and then. Not sure if I should post my email but for you it will be like family. ruchel55@yahoo.com
So glad to hear thing have settled. nice routine. Would love to correspond with you, I never did attend any of those conferences, because we had quite a large group here and shared much info, somehow never felt the need to attend.
My daughter has since gotten married B"H. feel free to contact me via email. Would be great if we can get more people aware of this site, so that we may have a jewish forum to deal with our specific issues, but till then, just write me a note. By the way, A very happy and healthy New Year, Shana Tova Umesuka! or Ah Git Gebentcht Yur as we say it in Boro Park.
Rachel.


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