| Register  | FAQ  | Search | Login 
It is currently Tue May 26, 2015 7:15 am

All times are UTC - 6 hours [ DST ]




Post new topic Reply to topic  [ 62 posts ]  Go to page 1, 2, 3  Next
Author Message
 Post subject: Spina Bifida Occulta/ Spinal Tethering
PostPosted: Wed Apr 22, 2015 6:46 pm 
Offline
Semen Strong
User avatar

Joined: Tue Oct 19, 2010 7:10 pm
Posts: 20164
Location: Cliffbar NJ
I'm really unhappy and confused and figured that the PPK is probably the best bunch of people to help me get my head around some issues with spina bifida occulta ("SBO") and spinal tethering issues. First, I am confused by the diagnosis and what is next and second I am feeling upset and angry at what I could have done to prevent this. http://www.mydr.com.au/babies-pregnancy ... da-occulta

Leela (3.5 years old) has been having unusual potty regression symptoms since early April. And it isn't that she is deliberately holding her pee or poop, she is not feeling it. She potty trained last year in June and in the last 3 weeks has gone from completely potty trained with no accidents to no longer initiating pees on her own and being surprised by the pee when it finally comes out in a huge pool wherever she happens to be standing. And at first I thought it was because she was dealing with loss of our dog or trauma from her dental surgery, but last week I figured I should take her in, thinking that the pediatrician would just run a urinalysis and we would treat it and she would tell me it was NBD. So I was shocked when she suggested doing testing to rule out SBO. I thought that the prenatal testing was supposed to rule out spina bifida, but apparently it doesn't rule out SBO, which is very common (the sources I have seen estimate that between 10% and 20% of people have it). And I took my folic acid prenatal vitamin religiously when I was pregnant, so I thought that was supposed to protect her.

I've since realized that L has a very very mild sacral dimple and a very slight patch of ultra fine dark hair on her lumbar area, both of which are present in 80% of the cases of SBO. But our pediatrician says that the hair isn't the signature tuft, which makes me feel a bit better and the dimple is closed and not deep at all.

But the urinary issues are concerning, and apparently can be the sign of spinal injuries in the region (the spinal tethering which accompanies some cases of SBO). And supposedly if not caught early, the damage can be permanent and can also affect the legs/mobility as well as continence. Our ped said that this is pretty common and that for the most part children diagnosed at L's age regain their continence

So we are going to see a urologist on Monday, and he is going to order an MRI (she will have to be sedated - her second sedation this year) to rule out spinal tethering issue and see if she has SBO.

I see three outcomes (1) she has no SBO and we go back to regular potty training and work with the urologist on other causes, (2) If there is spinal tethering, they'll get a neurosurgeon involved and she will have spinal surgery to untangle her spine. She will be in the hospital for 3-5 days and then will have several weeks of recovery. And hopefully we'll have fixed this. and (3) she could have SBO, but without tethering but still have urinary issues and then I am confused about what comes next. Like in number 3 would that mean that the SBO is unrelated? Or can it cause urinary issues without tethering?

I am superhappy we caught it early, because supposedly if you catch it later there is more significant damage and the child may not regain continence.

But OMG the whole thing is so overwhelming and I've been wandering around all day trying not to cry. She doesn't have a UTI and we're managing the urinary issues by putting her on the potty every hour to 2 hours, because she never seems to initiate and we are trying to avoid messes. I have her back in night time diapers, which she hates, and she is mostly dry, but it helps her wake up when she needs to go and I then put her on the potty.

TL;DR: HALP!?

_________________
My oven is bigger on the inside, and it produces lots of wibbly wobbly, cake wakey... stuff. - The PoopieB.


Top
 Profile  
 
 Post subject: Re: Spina Bifida Occulta/ Spinal Tethering
PostPosted: Wed Apr 22, 2015 7:04 pm 
Offline
Discovered unobtainium
User avatar

Joined: Tue Oct 19, 2010 9:21 pm
Posts: 12906
Location: Dinosaur Stampede
Poor Leela! And you!

It sounds like you have really good doctors who are doing all the right things. If you can, I would try to just breathe and see what happens with the tests before wringing yourself to tatters thinking about all the worst scenarios. I know that is really unhelpful advice, but it's what I try to do.

_________________
"This is the creepiest post ever if you don't know who Molly is." -Fee
"a vegan death match sounds like something where we all end up hugging." -LisaPunk


Top
 Profile  
 
 Post subject: Re: Spina Bifida Occulta/ Spinal Tethering
PostPosted: Wed Apr 22, 2015 7:04 pm 
Offline
TOTALLY CRADICAL
User avatar

Joined: Wed Oct 20, 2010 1:42 am
Posts: 5297
Location: Smugville, CA
I obviously have no advice to give but I just want to give my support! This must be so scary as a parent. It sounds, thankfully, like a completely surmountable challenge in any case, but of course that doesn't change the fact that it's a challenge, and a frightening one at that. Hugs.

_________________
Crazy rating: Double plus crazytown bananapants ~Jordanpattern
"It's, you know, your typical Portland restaurant; bowls." ~Kittee
Sews Before Bros
Norton's Movie Maps


Top
 Profile  
 
 Post subject: Re: Spina Bifida Occulta/ Spinal Tethering
PostPosted: Wed Apr 22, 2015 7:30 pm 
Offline
Brain Made of Raw Seitan
User avatar

Joined: Sun Nov 13, 2011 4:05 pm
Posts: 1232
Location: Willamette Valley, OR
Oh my, that sounds like an awful thing to be going through. I'm so sorry you have to deal with this!

_________________
Glad wrap! ... it's just a nice, friendly name. Like a suffocating, plastic hug. - Erinnerung

http://toocheapforpinenuts.wordpress.com/


Top
 Profile  
 
 Post subject: Re: Spina Bifida Occulta/ Spinal Tethering
PostPosted: Wed Apr 22, 2015 9:22 pm 
Offline
So Totally Yiffy
User avatar

Joined: Sat Jan 28, 2012 11:00 am
Posts: 44
Touflish,
We've already discussed I'm having sacral dimple issue with my 5 month old - except I don't have extra stress of the potty problems you guys are going thru...that has to be really stressful. So all I can add is hugs! We are getting our MRI in 1 week. But I want to just emphasize with the emotional roller coaster. I've dealt with the fear for several months...and it's hard to put out of your mind. I've had to work extra hard to enjoy our early babyhood and not always be anxious. There is always this terror in the back of my mind - and most likely there will be until we get this figured out.
But you are doing what's best for L and her future. It sounds like your Dr. has the bases covered with the MRI and urologist. I hope, for both of us, this turns out to be nothing!


Top
 Profile  
 
 Post subject: Re: Spina Bifida Occulta/ Spinal Tethering
PostPosted: Thu Apr 23, 2015 6:22 am 
Offline
Moving To Sheepshead Bay
User avatar

Joined: Tue Oct 26, 2010 4:49 pm
Posts: 5442
Location: Toronto, ON
I don't have anything helpful to add - I just wanted to say that I'm sorry that you and L are going through this!

_________________
I like my bagels like I like my men - big and covered with earth balance & nooch. - Bunniee

http://veganforthewin.wordpress.com


Top
 Profile  
 
 Post subject: Re: Spina Bifida Occulta/ Spinal Tethering
PostPosted: Thu Apr 23, 2015 6:48 am 
Offline
The Real Hamburger Helper
User avatar

Joined: Sat Oct 23, 2010 8:04 am
Posts: 2332
Location: nj
Wow, I'm so sorry you and L are going through this!! I had never heard of this disease before so i dont have advice but just want to send good thoughts for a quick recovery!

_________________
I'm not asking for utopian dreams...just a little peace in this world. That's a logical thing. - Deee-Lite


Top
 Profile  
 
 Post subject: Re: Spina Bifida Occulta/ Spinal Tethering
PostPosted: Thu Apr 23, 2015 6:53 am 
Offline
Seagull of the PPK
User avatar

Joined: Tue Oct 19, 2010 6:46 pm
Posts: 9328
Location: Brasil
lavawitch wrote:
If you can, I would try to just breathe and see what happens with the tests before wringing yourself to tatters thinking about all the worst scenarios. I know that is really unhelpful advice, but it's what I try to do.

Yes, very much so.

Having been in a very similar situation, may I suggest the following-
-do your best to cut off the guilt thing (when you find yourself thinking thoughts about guilt, mentally state "This is not my fault and I will not feel guilty about it" or something). I just read online that the prevalence of SBO is 25% in north america, which makes it ridiculously common. This is not your fault.
-try not to go to a consult alone, see if you can bring B or a friend, and before the consult talk to this person about what your questions/goals are. bring a notebook with all the info and either you or your chaperone take notes. (i suspect you probably already do this anyway)
-if you feel better about it, investigate the open MRI and degree of sedation, there may be some flexibility there. And remember, if L fell and hit her head and you brought her to the ER, and they ordered an MRI, you would probably not feel any hesitation at all about having it done.
If it turns out to be SB, there are some groups in NJ, and I would contact them to talk to other parents as soon as I knew for sure. In another lifetime I did parent peer outreach for cerebral palsy and heart defects, because the support from these parents helped us so much when we needed it.

Most importantly, take care of yourself. Keep on breathing and keep on moving. We are lucky to live in places where this can be treated.
Also, you've had a shiitake year, and it can't keep up, sooner or later the tide has to change and things have to start looking up. Hopefully it changes very soon.
Hang tight and if you ever need to talk, you know how to reach me.

_________________
Buddha says 'Meh'.--matwinser
I'm just a drunk who likes fruit. -- Desdemona


Top
 Profile  
 
 Post subject: Re: Spina Bifida Occulta/ Spinal Tethering
PostPosted: Thu Apr 23, 2015 9:06 am 
Offline
Married to the wolfman
User avatar

Joined: Wed Oct 20, 2010 9:49 pm
Posts: 6131
Location: Santa Cruz, CA
Urgh T. How stressful. I hope you have some answers soon-- whatever is going on, you and Leela will get through it once you know what you're up against.

_________________
"Hummus; a gentleman's vice." -- Mars

coldandsleepy cooks, THE BLOG!


Top
 Profile  
 
 Post subject: Re: Spina Bifida Occulta/ Spinal Tethering
PostPosted: Thu Apr 23, 2015 9:40 am 
Offline
Not a creepy cheese pocket person
User avatar

Joined: Wed Oct 20, 2010 2:17 pm
Posts: 4284
Location: Austin
We're all thinking of you. This is really not your fault. You're a fierce protector of Leela, and you'll continue that whatever happens.


Top
 Profile  
 
 Post subject: Re: Spina Bifida Occulta/ Spinal Tethering
PostPosted: Thu Apr 23, 2015 9:45 am 
Offline
WELFARIST!
User avatar

Joined: Wed Oct 20, 2010 3:30 pm
Posts: 5116
Location: zomgz dijk
mollyjade wrote:
We're all thinking of you. This is really not your fault. You're a fierce protector of Leela, and you'll continue that whatever happens.


This. (And everything torque said.)

_________________
ॐ लोकः समासतः सुखिनो भवन्तु
http://www.embracingtheworld.org


Top
 Profile  
 
 Post subject: Re: Spina Bifida Occulta/ Spinal Tethering
PostPosted: Thu Apr 23, 2015 10:31 am 
Offline
Wears Durian Helmet
User avatar

Joined: Wed Oct 20, 2010 1:19 pm
Posts: 885
Location: Northern NJ
Tofulish wrote:
I am feeling upset and angry at what I could have done to prevent this. http://www.mydr.com.au/babies-pregnancy ... da-occulta



I'm sorry you are dealing with this. What a stressful situation. I'd be a mess right now.

You did EVERYTHING you were suppose to do when pregnant. These things aren't 100% preventable. You seriously were one of the healthiest pregnant ladies I've ever known. Try not to beat yourself up about what you "could have done." If by chance L does have SBO or a tethered spine she's going to be really lucky to have you as a parent. You will do everything you need to for her.

Have a good cry. Don't try to hold in your tears. Just let it all out. It will help release some of the stress and fears you are having. See if B can take L to the park or something and cry your eyes out. You need to get it out! ::HUGS::

_________________
The blog: good-good-things


Top
 Profile  
 
 Post subject: Re: Spina Bifida Occulta/ Spinal Tethering
PostPosted: Thu Apr 23, 2015 11:23 am 
Offline
***LIES!!!***
User avatar

Joined: Sun Feb 12, 2012 4:10 pm
Posts: 4338
I think actually seeing the urologist should be really helpful and give you more information to work from than you have now. I already told you I would totally do the MRI based on the information you had, it just seems like the next logical step, but now you have someone to ask better questions of who knows what they're talking about, so that should be helpful. I still go back to my BRAIN acronym - What's the benefit? (if you do the MRI, you'll know if it's there or not and you'll know what you're dealing with) What's the risk? (the usual risks of sedation, the possibility of knowing you need to take further surgical steps which is scary) What are the alternatives? (is it reasonable to wait and see? if the bathroom stuff clears up will that mean something positive or no? is there anything else that can be ruled out before going for more sedation?) What does your intuition tell you? And what happens if you do nothing?


Top
 Profile  
 
 Post subject: Re: Spina Bifida Occulta/ Spinal Tethering
PostPosted: Thu Apr 23, 2015 11:25 am 
Offline
WELFARIST!
User avatar

Joined: Wed Oct 20, 2010 3:30 pm
Posts: 5116
Location: zomgz dijk
Ariann wrote:
I still go back to my BRAIN acronym - What's the benefit? (if you do the MRI, you'll know if it's there or not and you'll know what you're dealing with) What's the risk? (the usual risks of sedation, the possibility of knowing you need to take further surgical steps which is scary) What are the alternatives? (is it reasonable to wait and see? if the bathroom stuff clears up will that mean something positive or no? is there anything else that can be ruled out before going for more sedation?) What does your intuition tell you? And what happens if you do nothing?


What a great acronym!

_________________
ॐ लोकः समासतः सुखिनो भवन्तु
http://www.embracingtheworld.org


Top
 Profile  
 
 Post subject: Re: Spina Bifida Occulta/ Spinal Tethering
PostPosted: Thu Apr 23, 2015 2:13 pm 
Offline
Chip Strong
User avatar

Joined: Mon Oct 25, 2010 6:08 pm
Posts: 984
Location: PDX
Tofulish, lots of good advice already. It sounds like even doing everything right and taking folic acid only gives you better odds, not complete protection.

I had never heard of this condition, so thank you for posting. I'm going to talk to my 34 year old son about it, as it may explain a lot he went through. He was diagnosed with very mild scoliosis, plus had severe loss of bladder control until he was about 8 - he would come home from school most days soaking wet (yes, I sent extra clothes in for him to change and asked his teachers to send him to the restroom every break, but they just ignored it.) He also had bed-wetting issues until at least age 12. His older cousin had similar issues (and unfortunately was shamed a lot for it,) so maybe hereditary. But my son grew up to be one of the best people I know (and better adjusted than anyone else in our family!,) and doesn't have any related issues at this point. So good endings are definitely possible.

_________________
Formerly Kaleicious. I still love kale, but no more than lots of other garden greens too! Orach is currently my favorite.


Top
 Profile  
 
 Post subject: Re: Spina Bifida Occulta/ Spinal Tethering
PostPosted: Thu Apr 23, 2015 4:11 pm 
Offline
Seagull of the PPK
User avatar

Joined: Tue Oct 19, 2010 6:46 pm
Posts: 9328
Location: Brasil
lutin wrote:
Ariann wrote:
I still go back to my BRAIN acronym - What's the benefit? (if you do the MRI, you'll know if it's there or not and you'll know what you're dealing with) What's the risk? (the usual risks of sedation, the possibility of knowing you need to take further surgical steps which is scary) What are the alternatives? (is it reasonable to wait and see? if the bathroom stuff clears up will that mean something positive or no? is there anything else that can be ruled out before going for more sedation?) What does your intuition tell you? And what happens if you do nothing?


What a great acronym!

No kidding! what an awesome tool for decision making.

_________________
Buddha says 'Meh'.--matwinser
I'm just a drunk who likes fruit. -- Desdemona


Top
 Profile  
 
 Post subject: Re: Spina Bifida Occulta/ Spinal Tethering
PostPosted: Thu Apr 23, 2015 5:52 pm 
Offline
Semen Strong
User avatar

Joined: Tue Oct 19, 2010 7:10 pm
Posts: 20164
Location: Cliffbar NJ
Thank you all for the kind words and reassurance!

BossyLhassi, thank you so much for sharing your experience with your son. Your post was really invaluable for me in making decisions with our pediatrician yesterday. I hope he continues to thrive and that the MRI brings you peace and a clear way forward. Please keep us posted! <3

Thank you torque for the ideas on how to manage the information overload! I definitely feel overwhelmed by all the stuff out there!

I hope Monday brings us more clarity!

_________________
My oven is bigger on the inside, and it produces lots of wibbly wobbly, cake wakey... stuff. - The PoopieB.


Top
 Profile  
 
 Post subject: Re: Spina Bifida Occulta/ Spinal Tethering
PostPosted: Thu Apr 23, 2015 6:01 pm 
Offline
Drunk Dialed Ian MacKaye
User avatar

Joined: Thu Oct 21, 2010 1:03 pm
Posts: 1860
Location: Central PA
I don't really have any advice other than to point and nod at what everyone else has said, but I'm hoping that you'll have a better handle on all of this after seeing the specialist. I know that the "what ifs" can be overwhelming.


Top
 Profile  
 
 Post subject: Re: Spina Bifida Occulta/ Spinal Tethering
PostPosted: Thu Apr 23, 2015 7:43 pm 
Offline
Wears Durian Helmet
User avatar

Joined: Thu Oct 21, 2010 12:52 pm
Posts: 879
Location: Central Alberta, Canada
Oh, hugs, Tofulish! i hope you and your family are give the best possible news and outcome when you get the testing results! You wont be in limbo forever and i know you will still continue to be so loving to her regardless.

_________________
Formerly onestrangegirl, by golly!


Top
 Profile  
 
 Post subject: Re: Spina Bifida Occulta/ Spinal Tethering
PostPosted: Fri Apr 24, 2015 12:32 pm 
Offline
Dislikes Rick Santorum
User avatar

Joined: Fri Apr 01, 2011 11:51 am
Posts: 6210
Location: United States of New England
i dont know anything about this subject but just saying i hope everything goes well and the dr is just doing their due diligence and ruling it out. i can only imagine how stressful this is!! ((hugs))

_________________
Unimpressed Baby Blog


Top
 Profile  
 
 Post subject: Re: Spina Bifida Occulta/ Spinal Tethering
PostPosted: Fri Apr 24, 2015 2:45 pm 
Offline
So Totally Yiffy
User avatar

Joined: Sat Jan 28, 2012 11:00 am
Posts: 44
Thanks Tofulish!
And the reassuring/logical posts of everyone above really help me. I'll keep you guys posted on our journey with this. Right now sometimes I really get too emotional to think about it (he's my baby!) and the only way to cope is to put it to the back of my mind until we have more info. Like someone said above, I'm just really happy I live in a country where this can be fixed easily enough should he need a surgery. In Portland we have a great children's hospital so we are lucky to have access to a pediatric neurosurgeon.
I'm a first time mom - and I really let myself be eaten up about guilt regarding his sacral dimple - I had severe vomiting/nausea during my pregnancy and I had to take Zofran - did I thrown up too may of my prenatals? All of these questions I was torturing myself with. When I asked the developmental pediatrician about the possible cause he clearly said the cause was probably way too multi-factoral to pinpoint to one thing - for my own sanity I had to give up any maternal guilt and it has helped.
Because if it wasn't a dimple, it would be something, right? It's our job to worry about things as parents...so I'm trying to view this as an opportunity to grow as a person who battles anxiety. I'm a bit of a lurker but I want to say I read the playground posts the most and it's helped me immensely even before I was pregnant (it took us 2 years to conceive). It's nice to have a group of like-minded parents!


Top
 Profile  
 
 Post subject: Re: Spina Bifida Occulta/ Spinal Tethering
PostPosted: Fri Apr 24, 2015 3:28 pm 
Offline
Seagull of the PPK
User avatar

Joined: Tue Oct 19, 2010 6:46 pm
Posts: 9328
Location: Brasil
BossyLhassi, big hugs to you too. I meant to say this before but i am a bit scattered lately. i remember you here and there and i can imagine how scary all this stuff is. i have mentioned this elsewhere but when i was beating myself up about my daughter's heart defects our cardiologist made a Very Big Point of saying that there was nothing I did (he had a list, actually, and I heard him use it with other parents later. Nothing you ate, nothing you did, nowhere you went, nothing you had any control over at all, something like that. It was very, very comforting to me at a time when I was really good at beating myself up.)

_________________
Buddha says 'Meh'.--matwinser
I'm just a drunk who likes fruit. -- Desdemona


Top
 Profile  
 
 Post subject: Re: Spina Bifida Occulta/ Spinal Tethering
PostPosted: Sat Apr 25, 2015 9:29 pm 
Offline
Hoards Peppermint Jo-Jos
User avatar

Joined: Thu Aug 30, 2012 12:39 am
Posts: 777
Location: Sweden
I had no idea this exists! I think your pediatrician seems great - Leela is still little enough that I think a lot of people would just wait and see. Good luck, I'll be thinking of you.

_________________
I tend to hook up with people who give me chocolate, but I fail to see how this is a bad thing./tofulish


Top
 Profile  
 
 Post subject: Re: Spina Bifida Occulta/ Spinal Tethering
PostPosted: Sat Apr 25, 2015 10:16 pm 
Offline
Kitchens Planning Manchester
User avatar

Joined: Wed Oct 20, 2010 2:43 pm
Posts: 2578
Good luck to you and BossyLhassi. What a scary thing to deal with. I'm glad at least that even in the worst case scenario, it can be treated, it sounds like.


Top
 Profile  
 
 Post subject: Re: Spina Bifida Occulta/ Spinal Tethering
PostPosted: Tue Apr 28, 2015 12:50 pm 
Offline
Semen Strong
User avatar

Joined: Tue Oct 19, 2010 7:10 pm
Posts: 20164
Location: Cliffbar NJ
We went to see a pediatric urologist for L last night. I had 4 pages of questions that I had hoped to get answers to, but he pretty much just deflected and was unwilling to explain things to me, which was annoying. He spent 5 minutes with us (basically ordering more tests - u/s and x-ray) and then ushered us along. His reason for doing a u/s and x-ray rather than an MRI is was that the u/s and x-ray were "non-invasive." Which makes no sense - part of the reason I was hoping to just go straight to an MRI is that even though it does involve sedation, at least we would have a definite answer and I find it much more traumatic to try and hold L still for a decent U/S or x-ray than just putting her under to run an MRI.

But the good news is that he looked at L's back and said she doesn't have a sacral dimple or a tuft and he doesn't think she has SBO or a tethered spinal cord (to which I said - well if you can guarantee that, of course we shouldn't have an MRI, to which he responded that of course he couldn't guarantee anything). So I explained that our pediatrician was the one who flagged SBO/tethered spine, not me, and that she had reasons for doing so, which I explained. He said that he would be more concerned if she had bowel incontinence but urinary incontinence even after potty training is very common in 3 year olds. So I asked if that meant that if her continence came back we had nothing to worry about. To which he said nothing. So my husband is thrilled that he feels like she is fine, but I still don't feel completely convinced, mostly because the MD was unhelpful.

She has been doing better on the potty, and we've been cutting down on the accidents, but I still don't feel like she is reliably pottytrained. We're going to get the additional testing done and will go from there.

I found these two articles on pottytraining really interesting. http://www.babble.com/toddler/dangers-p ... ing-early/

And a response http://www.jamieglowacki.com/my-rebuttal-to-dr-hodges/

_________________
My oven is bigger on the inside, and it produces lots of wibbly wobbly, cake wakey... stuff. - The PoopieB.


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 62 posts ]  Go to page 1, 2, 3  Next

All times are UTC - 6 hours [ DST ]


Who is online

Users browsing this forum: No registered users and 3 guests


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group
Template made by DEVPPL/ThatBigForum and fancied up by What Cheer