i'm new and got 1.5yrold with sb

[mumtotwo]

Hi my name is Rosie i have a daughter who is 2.5 and a son who is 1.5 and has SB (L5,S1).
He is doing well but i got a million questions but never know who to ask r can't find answers anywhere so maybe you all could help.
We found out jamie had sb at 20 week scan and after going to belfast royal the digonise (sp??) was a lot worse than it turned.
Jamie is doing well now and is starting to pull himself up to standing position now which we never though we would see. He going to see the ortho in may to see about splints. So hopefully this will help him as he very determened and dying to get moving.
Any advice any one can give me would be great as i don't know anyone with sb and don't know a awful lot about it to be honest apart from what doc say and the internet

[bcain]

My daughter is 2.5 yrs old. S1-3, Chiari II, Syrinx, no hydro. Welcome. My daughter wore braces soon after she started to pull up to standing. Once she started walking however, she did better without them. So at present she's not braced. She has balance problems, and ankle weakness is noticeable when doing the stairs, or walking on uneven surfaces. But really know one knows she has a problem to see her walking and running. I can see it, because I watch for it. Our biggest issues were UTI's, and skin breakdown do to bowel incontinence, but that's much better since starting the enema routine. Feel free to jump in with any experiences to share, or ask questions.

[LisaJoy]

Welcome! Glad you found us.

[misty]

Hi Rosie! I have SB L5/S1 too! Welcome! Feel free to ask all the questions you can come up with!

[mumtotwo]

hey thanks for replies. I sort of started wandering more about his future. Doc wont really talk to much about it and keep telling me to wait to see what happens.. How you find with school, was it much more difficult? And with contenece i have no idea what the future is. He gets interminted cath 4times a day and get laculose for bowels but his bowels r extreminly frequent so don't know will he always need to wear nappy/pad r is there something they can do to help this when he older?? Even with schools i don't know if he needs a mainstream r special ed school? does there be a damage with the hdro? he had to have a resoivor in at start as he had mengises and too sick to get shunt, he then got shunt when he was 8weeks old and developed a cysts and got a telescopic ventriculoatrial shunt in feb. since that he has been doing very well.

[Dodger67]

Hi Rosie
Welcome! :happy065:

[LisaJoy]

hey thanks for replies. I sort of started wandering more about his future. Doc wont really talk to much about it and keep telling me to wait to see what happens.. How you find with school, was it much more difficult? And with contenece i have no idea what the future is. He gets interminted cath 4times a day and get laculose for bowels but his bowels r extreminly frequent so don't know will he always need to wear nappy/pad r is there something they can do to help this when he older?? Even with schools i don't know if he needs a mainstream r special ed school? does there be a damage with the hdro? he had to have a resoivor in at start as he had mengises and too sick to get shunt, he then got shunt when he was 8weeks old and developed a cysts and got a telescopic ventriculoatrial shunt in feb. since that he has been doing very well.

Well -- you really do have to wait and see. I know that's really hard! I do, however, recommend that you fight to have him mainstreamed. Now is not too early to begin looking into this. Do your schools have early intervention? In the US, kids with disabilities are often eligible to start at age 3 and get their PT and OT at school. Then they are usually mainstreamed when they reach kindergarten. (This varies a lot by locality, though) Typically hydrocephalus does not cause brain damage, but a lot of kids with sb do have learning differences (normal or above normal IQ, but problems with certain things, like mathematical reasoning or organization). But it'll be several years before your son is old enough for them to test him. Meanwhile, treat him like the normal kid he is! Everything you would do with a typical kid to prepare them for learning, do with your son, too. (Read to him, limit his exposure to tv, make sure he has plenty of opportunity for self-directed play -- others might have suggestions for you, too).

Regarding his bowels -- yes, there are all kinds of things that can be done to manage bowels. If you browse through the "children" section or search "bowels" you'll find recent threads on this. Most kids go on a bowel program pretty early; later on, there are surgical procedures that might be necessary to help him achieve independence in managing his bowels. Too early to worry about these yet.

When I respond about parenting questions, I always issue a disclaimer -- I'm not a parent! So balance my comments with those you get from people who are.

[hope&faith]

Just wanted to say welcome too!! I don't have any answers, I find myself doing a lot of wondering too about the future. I have 11 month old twin boys, one with SB, thought to be L1. Were working on the regular baby stuff right now and not much else so you are a few steps ahead of me. Alex is shunted too. Any of the docs we have talked to have said to expect normal intelligence with regards to SB so we plan to mainstream in school when its time. He is getting therapies through our program here called early intervention, not sure if you have access to something similar there? its quite helpful I think, at least for me in knowing how to help him get more mobile, what to expect "next" kind of thing.
Alex is not cathed at this time but I have heard from other parents that this is not a big deal as they children get a bit older, that they learn to manage this quite well themselves--maybe going to the schools nursing office if needed once or twice during the day? I'm sure others will chime in who are more experienced with some of this.
:) Holli

[mumtotwo]

hi lisajoy thanks for the info. I dont think we have a early intervention here but will need to check out for sure. We at ot this week and she going to refer him to a playgroup for special needs children under 3 it will only be one day a week and for one season but he can recieve his pt, ot and st there. then when he is over three he can go to the local play group for a year and then to school when he 4. I have to look into what school to send him yet as our local school has stairs and no lift so as katie will be going to school next year i would perfer them to go to same school.
hope&faith hi to you hope your boys doing well do you find it extra difficult with twins do you not find your self comparing them. I know with jamie i always thinking katie could do such at this age etc. we go to child develpment clinic once a month where he sees his therapists as far as i can tell it simalar to ur early intervention program. i finding this site great though i getting more answers here this week than i have since i found out he'd sb
Good luck

[Dodger67]

i finding this site great though i getting more answers here this week than i have since i found out he'd sb
Good luck

You'll be surprised how quickly you become an expert - you'll be teaching the docs soon! :Banane21:

[mumtotwo]

ur so right. i looked at this site when i was pregnant but never joined i don't really know why not now i wish i had as i really could of done with the surport i found it very hard to accept

[ainemc]

Hey Rosie,
I'm Aine and I have a little girl who has sb and hyrdocephalus. Her name is Caitlin and shes 4months old this friday. We are from Belfast so not far from you! We go to the Royal for appointments, we have an appointment to see the ortho in May too. How did you find out exactly were Jamie's level was? Ive got told L5 but the ortho said her level is sacral. Have you been in touch with ASBAH? Its the Association for Spina Bifida and Hydrocephalus. They have really helped me. They have a parents group which meets up a few times a year, I haven't joined yet but plan too the next time I meet the ASBAH advisor. I intend to send Caitlin to a mainstream school. The ortho said worst case scenario for Caitlin is that she will need splints but even with splints i'm hoping she will be able to climb stairs...(Does anybody know if you can climb stairs with splints?)
Caitlin is cathed 5times a day, im waiting for urodynamics to tell us what the next step will be.
Anyway, really glad you have found this forum - it has been a lifesaver for me and its nice to know theres somebody who doesn't live too far away that can understand what its like for their child to have spina bifida.

[mumtotwo]

hey I have replyed to another of your mes saying how we should meet up we don't live to far away. I achually don't know anyone else with sb so would love someone compare notes with. Yeh asbah great havnt heard anything from them in a while but they came out with me and helped me fill in dla etc. Jamie was in hosp in feb and one of the doc said then that it was L5, S1 but not overly sure if that def r a guess. I think my appointment on 16th may with mr crosgrove if you there that day we could meet.