Introduction to me and the site!

[Barb]

Hi! My name is Barb and I am an admin here at SBC! Years ago I opened this site as a forum for people living with spina bifida. It was a great and active forum but, unfortunately, my real life became very hectic (lots of surgeries) and I also went back to work at the same time. I had to close the board which was very sad for me. I am so happy that we are able to reopen the site and have the financial backing of a parent company to keep it open for the long haul this time!

So, my 'story'. I am a mom to two boys, one who was born with an L3-L4 myelomenigocele. He is 9 years old now. My other is 11. "C" as I will refer to him for short on the boards is recovering from his 1st detethering in May. It has been a LONG road. He was ambulatory with bilateral afo's prior to but is now using his chair full time. Rather than tell it all in a story I will bullet point his various diagnosis:

shunted hydrocephalus (programmable)
slit ventricle syndrome
chiari II malformation (decompressed at age 3)
cecostomy
autistic spectrum (very high functioning)
latex allergic (has had anaphytic reaction)Now the IMPORTANT stuff:

He is very, very cute (no, really he is!)
On grade level in all subjects but math (we are homeschooling this year)
Pretty much a typical kid
He loves Disney and Bears
Wants to be a Rock Star or an Imagineer when he grows up
Has a very cool new TiLite chair with light up wheels.So, I guess that about sums it up. I loved sharing with and learning from all the members years ago and I am so lost without the support.

[KMkaggerud]

Barb, I am glad your boys are doing good. I am a 37 yr old woman with SB. I work as a school teacher of kids ages 0- 5 with special needs. I was using crutches for my whole childhood. I went to using a chair most of the time in my early twenties and have found that I am more active now being a chair user than I was when I was using my crutches. I also have a Learning Disabled. I had problems with my reading that I had until I was a senior in high school.

[Barb]

I used to be a teacher! Do you work for an early intervention program?

[junior]

Hello Barb my name is jr. I have a beautiful lil girl who will be turning 6 this month. She is now in kinder. "full inclusion" she is the reason i've joined because my wife and i have so many questions. Our daughter is very bright and independent but there are a couple things we are not quite sure how to teach her. One of the main things is teaching her how "cath" herself. Any suggestions will be greatly appreciated. thank you

[Holly]

I guess it is time that I join in here :) I do not have SB or have a child that does but I consider Barb an extremely good friend and she has taught me so much about SB! Her son C is an absolute delight and he really cracks me up! I may not be able to answer all of your questions as well as her but I am doing my best and I will help in anyway I can. Feel free to educate me if you want me to know something!. I am tech savvy so I can figure out any site problems/questions you might have:) Thanks for letting me be a part of your community and advancing my knowledge of SB!

[angel]

I am new. I am looking everywhwere for forums on SB and can't find very many active ones anymore. I am 30 i have L4/L5 Myleo. I am the mother of an 11 year old who also has a neural tube defect. Looking forward to the discussions

[Spokie]

Hello Angel!

Welcome to the site. I also struggled for long to find a decent SB site.
Stop your search - this is it!!

[mommy2cnj]

One of the main things is teaching her how "cath" herself. Any suggestions will be greatly appreciated. thank you

I have a 12 yo son who had been cathing himself for quite some time. However, due to the lack of sensation, he ended up creating a false passage which produced a blood clot. Doctors now say that rather than self-cathing below, having a port for him will be the ideal way to conquer this task.

I also have a 9 yo daughter. Due to her developmental disabilities, the question of self-cathing was not raised until recently. Will she be able to do so? I honestly don't know at this time. However, due to one wonderful nurse who called into the Mentor/now Coloplast company, they have little backpacks that are filled with things to help the child learn about the process before attempting to do so.....things such as beading a necklace (to help with fine motor skills, which are also rcv'd in OT), to a deck of cards sequencing the steps (ex: gathering supplies, washing hands, etc).

I thought it was a wonderful idea and can only wish we had this option with son as well.

If anyone would like any more info (contact #, etc), please let me know.

[angel]

I have to agree i do like this site already!!

I don't know much about cathing to be honest but i do know that when i tried it it really hurt!!! I do have sensation and always in a way thought the ones who couldn't feel it were so lucky. ( i look for the perks in every situation lol) I am sorry to hear about the trouble your son had. I didn't know you could create a false passage!!!

[mommy2cnj]

Now that I read my post over, I want to make note that the false passage occurs in males....sorry, should have been more specific. At any rate, it was quite the experience, yet we learnt from it!

[Dodger67]

After a lifetime of struggling with CIC which seemed to have little to no effect on the rate of leakage, I got an artificial sphincter, unfortunately it failed due to being "strangled" by the formation of tough fibrous scar tissue. A few years ago I had a continent diversion done, known as an illeal T-pouch. Problems solved! I now catherterise through a small stoma in my navel. No leaks, no smells, no bags, no hassles! My catheter simply goes everywhere I go. I have a very good capacity (about 400-500cc), enough to sleep through most nights (unless there was beer involved before bedtime!) LOL!

[angel]

That is good info to have i have a son and though he doesn't cath now you never know if he will have to in the future.

[susan]

Hi everyone...I'm a little surprised and curious. My 13 year old daughter was diagnosed with SBO today, after a long history of progressively worsening pain and muscle spasm. She's going for a CT on Monday and starts physical therapy next week for the spasms. Online descriptions of older child and adult diagnosed SBO have caused me reason for serious concern, regarding bowel and urinary problems and neurologic damage. Does anyone have any experience in this area? I could use some info from another parent or person in the same boat. Thanks. :sign0009:

[angel]

I have an 11 year old boy with SBO. Feel free to ask me anything!!

Angel

[harmesh]

hi there,my name is Harmesh Singh. I'm 31 yrs old & working as a lawyer in Kuala Lumpur. i just got married some time last year to an able bodied person. Its been a pretty interesting experience marrying someone different. :signs116:Am pretty new to this whole blogging thingy so if there are any shortcomings just ignore em :-) i have spina bifida cystica at the L4 level...Coz of this i have urinary & bowel tract incontinence. I also have hydrocephalus for which a VP shunt was inserted when i was very very young. Of course the shunt has been revised repeatedly over they years and so far so good...:-) I think this is more than enough for an intro. If anyone has any questions pls dont hesitate to drop me a line...till then i'm signing off

[Dodger67]

Hi Harmesh
Welcome to the forum. Please feel free to contribute to any of the threads here and to start your own too if you like.

[hdsst3]

Hello Everyone! I'm 33 years old and live in Willimantic, CT. I have Spina Bifida and Hyrodocephalus. Also, I have some pressure sores and a heart murmur. I joined this site hoping to get some support. Willimantic is a very small town and I don't get good medical care. Also my financial situtation is not very good. I only have a part time job. I have a computer science degree and have not been ableto get a job for sevrel years.

I already know about Yale New Have hospital and in my opinion they are a bunch of assholes. I called them several times and they always tell me that they are not talking new patients.

Well, I have no idea what other hopsital in Connecticu has a clinic for people with SB. I have 3 pressure sores. Also, my PCP has just quit his job but he wasn't very good anyway. He put my on hypothryroid medication and I don't know why after many years of have a normal thyroid I now have problems.

Hopefully some here can help me.

Thanks:3a:

Harry

[stub20]

Hi, nice to meet you. I dont really live anywhere near there, so i dont know if this is all total facts, but i've been looking around on the net, and the only SB clinic i can find is the one that you have mentioned.

[stellalatella]

My name is Stella and I was born with multiple birth defects, one among the many is SB. I have had to learn to live with it and all that it has thrown at me. My main goal in joining this forum is to learn to deal with some of the issues that have been obstacles for me my entire life. I have only known 2 other persons with SB, one has passed away, and the other I don't really know well enough to ask tough or personal questions. I look forward to meeting other adults who can help me through this jungle of a journey I call "life".

Thanks in advance for your patience from all!

[Moleron]

Hello everyone.

My name is Rob I am 34 and have SB. I have been searching the net for a long time trying to find a suitable place for info on how to live with SB. I am a bilateral amputee but when I was young I was a normal functioning kid. I started getting problems with sores on my feet and that was when the roller coaster started. :P Looking forward to talking with all of you.

[Barb]

Nice to meet all the new comers!:Banane21:

[Purpleswan]

Hello, I am new here and I don't have SB or a child with it. What I do have is a boyfriend that does. I want to understand better about what he has to deal with and be better prepared to talk about things if he choses. I Love him very much but feel he is holding back because of doubts about my staying ability. I want to learn more about what life is like with SB and are there things I must know? I am not even sure what to ask at this point.
Swan

[ollieholmes]

Hello, I am new here and I don't have SB or a child with it. What I do have is a boyfriend that does. I want to understand better about what he has to deal with and be better prepared to talk about things if he choses. I Love him very much but feel he is holding back because of doubts about my staying ability. I want to learn more about what life is like with SB and are there things I must know? I am not even sure what to ask at this point.
Swan

I am in a similler situation, except it is my girlfreind with spina bifida and hydrocepalus. I feel exactly the same as you.

[SkyhawkTR]

Hi, Thank you for the wonderful site. My wife (SweetfaceNC) and I just found out Thursday that our 19 week daughter (due in Nov), has been diagnosed with SB, too young to figure out exactly where, but lumbar/sacral region. My wife and I have been reading anything on the internet to educate ourselves on SB and other fetal defects. But thank you, this seems to be a very well knowledged group. I look forward to sharing with you all...

Drew

[Dodger67]

Welcome Drew

As you can see in a few other threads here, making an enormous effort to get an "accurate" diagnosis before birth is genrally pointless as nothing can be done about the condition before birth anyway. Also the location of the lesion is only a very approximate indicator of the range of possible effects. So IMHO its really not woth making a huge issue about it.

All this is just my personal opinion and I am known as the "cynical old guy" here. LOL!

[amigirl]

Hello,

I'm sort of new here and I haven't introduced myself yet. I am dating and want to marry a terrific guy with SB. He's the best thing that ever happened to me and he seems to feel the same way about me!:o He is usually pretty open with me about his health issues and right now he is dealing with a serious pressure sore. I posted about it earlier under Adults and Pressure sore issues. Any advice on what I can do to be more supportive and helpful would be greatly appreciated.

Nice to meet you all!!

(Especially you Dodger. I like how you say how you feel so bluntly! :)

[Justy Me]

Hey amigirl, nice to meet you too! Welcome, welcome WELCOME!!!! I think that pressure sores are the worst issue that us who have SB have to deal with. They just seem to be so unpredictable and once they appear it takes a toll on the person (emotionally and physically). Has he seen a specialist??? Also, where is it located? I had one a lil over two years ago, and it was around for two years before that. I was severely depressed and I thought life was over. I just could not deal with an existence that circled around trying to heal it with no end in sight. Anyway... My particular problem stemmed from an improper fit of my old wheelchair. For me, I found that as soon as I changed my pillow (the seat of my wheelchair) the sore went away fairly quickly. air pillows are a must. ( again my advice depends on where it is located but in my experience those things helped--oh and taking zinc helped too--he should try it!) I will pray for you guys and I hope I was able to help somehow!!

[amigirl]

Thank you so much for your advice and support. His sore is on his hip/butt. He is seeing a wound care specialist but his Dr doesn't provide nutrition advice. I read that sores need lots of protien, Vit C, Zinc, and Iron to heal so (with his permission) I bought him a High Potnecy Vit & Min supplement as well as a high quality protien powder to make shakes with. I hope it makes a difference. He is skeptical about whether or not it will help. But I figure why not try it. He has to lay on his tummy for as long as he has the sore and being stuck at home really depresses him. I HATE to see him suffer. But I guess this is just another bump in life that we will deal with together. If he is scrupulous about his care and has the needed nutrition, how long should I expect the healing to take? The sore is larger than a quarter and open fairly deep, but it is not infected as of yet. Plus, he is using a wound vac, and may have a skin graft surgery soon. Again thanks.

[angel]

I am in a similler situation, except it is my girlfreind with spina bifida and hydrocepalus. I feel exactly the same as you.

This is for both of the people who's significant others have SB. I have it and my husband does not. I think it is really great that you want to learn as much as you can.
When my husband and i were together (before we got married) i never really discussed my sb that much because it really is such a small part of who i am. When we decided to get married i felt there might be some things that needed to be discussed. I initiated the conversation and he knew just as much about SB as i did. I was shocked i asked him how he knew so much about it. He said I wanted to learn about it so i would know how long you would live (he didn't know before that my life expectancy was like everyone elses) He wanted to see how much time we had together. I will tell you right now that was the moment I KNEW i had found the right one for me.
I can only speak from personaly experience but when we first got married and he was there for every part of my day to day life he really tried to help me with everything. This totally annoyed the shit out of me!!!! I very nicely told him that i really need to do for myself everything i can. If i need your help with something i won't hesitate to ask for it. If i fall and i can't get up then pick me up but just back off a little. His heart was totally in the right place and it didn't take him long to understand and everything was fine. He still from time to time gets nervous when i am climbing on something to reach what i need and stuff like that but for the most part SB plays no role in our relationship. Just love eachother

Angel

[Dodger67]

Hi Amigirl
Thanks for the compliment.
A few thoughts on pressure sore issues.
He needs to get a very good seat for his chair. I have a Jay2 Deep Contour and since I got it have not had any problems at all - not even a hint of redness! See www.sunrisemedical.com (http://www.sunrisemedical.com) to find your nearest dealer.
Lets hope the surgery works.
As soon as he is able to move, get a proper seat cushion - not the next week or even the next day - immediately!
Even the best cushion money can buy is no good if he does not keep monitoring his skin condition daily.

[Dodger67]

Well said!:clap2:
The same advice applies to mothers as well as other relatives and friends!

We all love our mothers but some of them really do cause a lot of damage by creating dependency in their disabled child. (This applies to all kinds of disabilities, not only SB.)

As my brother often puts it: "Get your own beer! Are you paralysed or something?":Banane21:

[amigirl]

Thanks Dodger! I will definitely suggest that he look into that cusion. He seems to be healing fairly well so far beacuse he's been staying off it. Thanks to everyone for their support! :)


Angel, I know exactly what you mean. My guy is so independent. Sometimes he gets offended if people try to help him without asking first. Or he feels that if they do ask they are somehow implying that he is incapable of doing it himself. I realize he is very capable, its something that attracted me to him initially. I have had to feel him out on what things he wants me to help with and what things he would rather do himself. I try not to get upset about it either way. Afterall, I think its great that he'd rather hold the door for me than have me hold it for him. He can treat me like a princess all he wants! <3

[ollieholmes]

I agree totaly, i try to only help when she asks me for help.