| Name: reann | Date: Sep 15th, 2008 10:32 PM |
| Hi am Reann I'm 27 I live in s wales uk with my partner Ryan and 4 children Saul 6, nicky neally5, ashley neally 2 and maddie 6 month, Ashley as spina bifida L4 L5, she also as a shunt fitted , a discolated hip and talipies! If anyone like to chat email reannlouisejenkins@yahoo.com, also I've read a few people with alot of things on there mind have u tryed asbah? It is 4 people who are spina bifida , or exspectin a baby wiv spina bifida or ave children with it, I ave a great asbah adviser who I can speak to and will cum out to the house if I wanted , if it wasn't 4 them I wldnt be where I am now, there great, it's 4 people in and out of the uk .... ↑ |
| Name: Reann | Date: Sep 15th, 2008 10:59 PM |
| my little girl is 2 and and me and my partner uses catherters at first it was hard to think about doin it but it's easy when u get started and now it's part of sumin normal to her and us I think if u just tell ur son sum children do use caths and just show him how well he's doin he,ll be gr8 ur confereance will rub off on to him! As 4 infections everyone worries but my little had a infection last week, one in 2 years! But he'd no if he had a infection he'd be un well, and doc would him antibiotics to clear it, ashleys also on medicans one of which is a antibiotic to provent infections and the other is oxi something,and apparantly it does make sum kids like u say but apparantly there's other medicans that do the same trick but doesn't give u a dry mouth,try askin doc about differant medications! Ave u got a nurse who deals with this ? We ave, and apparantly alot of kids at a earlie age cath them selves now, also have u been in touch with asbah? They are gr8 help! ↑ |
| Name: Casey | Date: Sep 29th, 2008 3:26 PM |
| My neighbors have a child with Spina Bifida. They are a really great family their son is so sweet. He is turning 6 years old. I would love to get him a present, but I wasn't sure what I should get him. Does anyone have any suggestions? ↑ |
| Name: shunika | Date: Oct 9th, 2008 4:01 AM |
| can someone please talk to me ↑ |
| Name: Robin | Date: Oct 9th, 2008 3:07 PM |
| My son is a little over a year old and has SB. We found out about it when I was 26 weeks pregnant and were given the option to terminat the pregnancy. It wasn't even an option for us at that point! He is a fantastic kid with a great little personality and I can't imagine not having him. The surgeries and all the unknowns are tough sometimes, but I think there are hard parts to having any kid, ours are just more obvious. ↑ |
| Name: dustin | Date: Oct 12th, 2008 8:04 PM |
| Name: JJ | Date: Oct 12th, 2008 9:11 PM |
| My cousin has spina bifida. I was 11 when he was born. He had many complications at birth. I am a student taking a class for Exceptional Children. Is everyone receiving support from your school systems? ↑ |
| Name: chris | Date: Oct 13th, 2008 8:48 PM |
| if a child has spina bifida why would they need to shave their skull. I mean i kind of get it but i want to know exactly for what purpose does it surve? ↑ |
| Name: Dana | Date: Oct 15th, 2008 1:23 AM |
| im 20 yrs old i have level 4 spina bifida would like to talk to anyone who want to talk to me about it. thanks ↑ |
| Name: reann | Date: Oct 18th, 2008 8:02 AM |
Hi if anyone wld like to chat email
Me I ave 4 children Ashley as spina bifida she's neally 2 I'm from s wales uk email reannlouisejenkins@yahoo.com ↑ |
| Name: Reann | Date: Oct 18th, 2008 8:11 AM |
| hi casey think it's great u wld like to buy the little boy a present , I suppose it may depend on his disability really my six year old loves any thing like barney dinarsaur ben ten and my other one likes power rangers extra so u suppose he wld to my daughter is neally two as spina bifida as she plays likes what every little one likes even choclates ands sweets make great presents 4 kids ↑ |
| Name: Jodi | Date: Oct 23rd, 2008 12:49 PM |
| What are some special problems for the parents with kids with Spina Bifida ↑ |
| Name: tina | Date: Nov 10th, 2008 1:11 PM |
| Hello well i am 26 years old and i have a baby boy who is 4 and was born with spina bifida.he has the lowest case. The only problem he has is that he cant control his urine or bowel movement. tring to find a way that i can get him to get on some type of routine does anyone have any ideas or suggestions. ↑ |
| Name: Reann | Date: Nov 12th, 2008 12:40 AM |
Hi tina! Where are u from? I ave 4 children , i'm 27 and my daughter is 2 as spina bifida? I'm from s wales uk! Ave u tryed asbah they help with bowl n bladder problems ? I no they help alot! U can email
Me anytime Reannlouisejenkins@yahoo.com ↑ |
| Name: aashi | Date: Nov 24th, 2008 8:05 AM |
| Name: rebecca | Date: Nov 26th, 2008 5:06 AM |
| hi my name is rebecca i am 26 weeks pregnant and my baby who is a boy (charlie) has mylomeningecole lumbo sacral spina bifida l5 s1 i am very confused because i have never gave up on him but wen i talk to people they always say sorry to me he is a fighter he kicks and moves all the time and very active people keep saying hell be paralised but how can he doctors are saying he will walk but late and might stop walking early but every individual person is different arent they?please somebody give me some answers cause i cant sleep at night and feel sick with worry i have 2 other children a 5 year old and a 1 year old and my husband has epilepsy so i already have an active life now so just some advice would help ↑ |
| Name: Talita | Date: Nov 26th, 2008 7:46 PM |
| i was born with spina bifida, but i have absolutely no problems at all. i looked up the different types of spina bifida, and i assumed i had occulta, but i was born with a massive lump the size of a goose egg, and it says that occulta spina bifida is usually not noticeable. it also says that problems can occur during the growing stage but i've experienced nothing. the doctors also found teeth, guts and bone in the SB sac, so i was wondering it it couldve been an unformed twin that turned into spina bifida?? if anyone could explain that would be really appreciated ↑ |
| Name: Mary | Date: Nov 28th, 2008 11:38 AM |
| I am so sorry for any one who has to go threw living with SB. I am 12 years old and also have to go threw it . So now i no that i amm not the only one that has to deal with the preasure ↑ |
| Name: Mommaof2 | Date: Dec 4th, 2008 10:42 PM |
| My best friend is 26 weeks pregnant and just found out that her baby girl has spine abifda with the fluid on the brain? Any advice I can get would be greatly appreciated. Thanks ↑ |
| Name: Sarah | Date: Dec 10th, 2008 4:19 AM |
| I have Spina Bifida and Hydrocaphelus ↑ |
| Name: Ricardo | Date: Dec 30th, 2008 2:55 AM |
| I'm replying to rebecca, I'm 18yrs. old, and i was also born with myelomeningocele. I want to tell you, to never give up hope. Doctors told my parents that I would be paralyzed by the age of three, that I would never be able to play any sports, and that I would have to take special ed. classes. The reason that I'm replying, is because I proved all of them wrong. I am one of the brightest students in my school, I played soccer until high school, and I am still walking. I have only had a few problems with my bladder, and tethered cord. I realise that things could be a lot worse, and I want you to never give up hope, anything is possible. ↑ |
| Name: KRISTY | Date: Jan 5th, 2009 2:39 PM |
| hi am 19 yrs old and i was born with spina bifidia but i dont have any problems beside bladder problems is there anyone like me ? ↑ |
| Name: sage storo | Date: Jan 11th, 2009 8:55 PM |
| Name: Nikki | Date: Jan 13th, 2009 9:40 PM |
| I am a 17 year old girl with spina bifida and i would really like to meet friends that are facing the same problems that i am ↑ |
| Name: Nikki | Date: Jan 13th, 2009 10:00 PM |
| I would really like to talk to someone that understands some of the things that i am going through.. so please talk to me ↑ |
| Name: Nikki | Date: Jan 15th, 2009 2:32 PM |
| My email addess is mcpherson_02@hotmail.com so if anyone wants to talk about there problems with me i am 17 hand have spina bifida ↑ |
| Name: mjsm | Date: Jan 19th, 2009 11:03 AM |
| im megan and im 18 years old and pregnant with my first baby and live in ireland. i am 6 months pregnant and my baby has the severest case of sb. docors told me they dont think my baby will surive and if he doesthat he will be severly paralised physically and mentally. they more or less recemended i went to england for termination as it would not be fair on my baby if he survived which i agree that it would not be fair on him but no way could i go ahead with termination iv so much more to say and ask if there is anyboby young and going through the same or has gone through same circumstances please reply to this. ↑ |
| Name: jess | Date: Jan 19th, 2009 11:48 PM |
i am a freshman in high school and have had spina bifida my whole life. i am luckily able to walk and play basketball and a lot of other things, even though the doctors said i would be in a wheelchair and at the very best be with leg braces. i have had 3 spinal cord releases and am looking at the possibility of a fourth.
i also self cath.
i would love to talk with anyone who is going through or has gone through similar situations.
my e-mail is
bball24jk@aol.com ↑ |
| Name: mjsm | Date: Jan 20th, 2009 1:26 PM |
| anyone that has seen my last reply and could talk to me please reply back ↑ |
| Name: SammysMommy | Date: Jan 21st, 2009 12:06 PM |
| My son is 2 and a half and has spina bifida. He is truly a blessing to me in every sense of the word. There are times when it is hard to see other children his age up and running around when he cant. It makes me hurt for him. I need someone who understands what it is like to have a child with spina bifida to talk to about certain things. You cant talk to just any one because they dont know what it is like and cant understand and think its no big deal. Any advice would be much appreciated. ↑ |
| Name: SammysMommy | Date: Jan 21st, 2009 12:21 PM |
| Megan, the doctors told me all of that as well before our son was born. we know how it feels as does everyone else with children with spina bifida. if you need to talk email at jsmsykes@yahoo.com. ↑ |
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