hello

[elise]

i just wanted to say hi! im new to all of this. my daughter was actually diagnosed today with spina bifida. im thinking its just the occulta kind but i take my son in to the docs on thursday and i will be talking to her in more detail. it was pretty much a phone call telling me yup, shes got it. i have so many questions for her and i dont even know if she can answer them. i feel so overwhelmed and i would much rather talk to people who actually have experience in this. anyway my daughter is 8, she has horrible bladder problems and she was diagnosed with adhd but im thinking maybe they are related and thats why the meds never seem to work. when she was first born the doctors told me they thought she may have had it but they did tests and she was fine! hello?! now its coming back that she does. (i should also say that she has a small dimple in her butt, like all the way at the base of her spine. the xrays came back that it starts at c5 which is around the middle of the back? is that right?) if i would have known then, we wouldnt have been through so much hell, me and my daughter. it hurts me to think of all the yelling and frustration i had with her and it wasnt even her fault. she has technically never been potty trained. i just dont even know where to start. does anyone else have experience in this particular problem? i wonder what its gonna be like for her when she gets older. will it get worse? the doc said she had a slower reaction time to her reflex test in her right leg. is that signficant? so here i am, im just looking for some answers or guidance, maybe little tricks or things that help her. i appreciate anything anyone can say. thank you!

[Dodger67]

Hello and Welcome!
Just one small comment from me - C5 is in the lower neck, so maybe you should double check your information. It works like this:
C=Cervical = neck (there are 7).
T=Thoracic = chest - all the vertebae that have ribs attached (12)
L=Lumbar = lower back/waist (5)
S=Sacral = 5 vertebrae that are completely fused together and form part of the pelvis.
Then there is the cocyx, also called the tailbone, 3 to 5 (usually 4) very reduced vertebrae more or less fused together. They don't have any part of the neural tube so are not subject to SB.
The numbering in each section goes downwards.
See: http://upload.wikimedia.org/wikipedia/commons/5/54/Gray_111_-_Vertebral_column-coloured.png and http://en.wikipedia.org/wiki/Vertebra

Regards
Roger

[elise]

Thank you! When i go to the doctors tomorrow i will make sure i know exactly which spot it is because now im really confused...lol.

[lolathechecker]

i was diagnosed as having adhd as a kid, but non of the treatments ever worked. then they told my mom that because i only had a few symptoms of adhd that i must be bi-polar. and i remember specifically having problems with bowel control until i was about 7 or so. i used to get in huge trouble because i would mess my pants and i had no idea that i was going! i tried really hard to figure out why it was happening, and then i guess as i got older it stopped. but my mom just told me that i had a strange hairy patch on my back when i was born, but it went away. so now im 21 and pregnant with a baby with sb. so im getting it checked out after shes born, but now we're convinced that i have spina bifida occulta. dont worry. things will get better now that you know whats really happening. they will be able to treat her, not just her array of symptoms.

[elise]

Thank you for that! Did they ever get your adhd symptoms under control? is there something that you can take for that? its really sad to think of a kid, you or anyone, having those kinds of problems and not knowing why and not having people understand. my heart really breaks for kids in that situation. kids should be running around playing not worrying about whats going on with their bodies, but the truth is it happens all the time.

they just switched hers meds again last week. i dont like them at all, but shes in danger of failing 3rd grade. the new meds suck horribly! im hoping tom. i will get more answers.

[mommy2cnj]

Just want to say I feel your pain, your fears, your angers, frustrations, etc. I have an 8-yo daughter as well, and we've been dealing with ADD (without the H), and throw behavior into the mix as well. She's been getting into trouble at school, and sometimes I just sit back and wonder if there's something we're missing.....especially when I come upon an informational site that describes her to a T. We are now "searching" for more answers. My daughter enjoys going to gym, music, her "specials" as they call them, but the problem is getting her to wheel herself there. Once she's there, she has a wonderful time and comes home to tell me about it. Now I'm learning that this may have something to do with sensory integration....one of the many signs/symptoms can be the child not wanting to leave their "security blanket" aka "safety zone" aka "small setting". Who would have known? This is just one of the many issues that we've seen thus far. Who knows what we'll find.

Don't give up hope! There are so many things out there that while we, ourselves, may not be aware of them, there is someone out there who indeed is. I hope you find answers, and if nothing else, encouragement from sbc, here.

As I have learnt (over and over and over again), there's always more to learn.

Take care and let us know how the appt. turns out!