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Old 04-18-2008, 09:58 PM   #11
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Re: Spina Bifida Occulta?

Spina Bifida Occulta is nothing to be alarmed about in and of itself. It means there is a defect in how one or more of the vertebra formed in utero. However, a super-deep dimple COULD indicate a tethered spinal cord and that will be determined via MRI, which is why (I'm sure) your child is having one done.

I have 3 children who have SBO along with tethered cords (which have been surgically released) and they have a condition called chiari malformation, too.

I also have a son with spina bifida, but his is way more-involved than SBO and has caused nerve damage and bladder/bowel dysfunction. He also has chiari malformation.

Let us know how your kiddo's MRI turns out.

Oh ~ if your child DOES have SBO and you decide you want to have another baby, be sure to take 4000 mcg (NOT just 400 mcg) of folic acid every day for at least 2 months prior to conception and then the entire first trimester, as well. Buy 800 mcg tablets and take 5 per day, spaced throughout the day for maximum absorption. This is your best chance at not having another child with a neural tube defect and it's important because NTD's tend to become more-severe with each child who has one.

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Old 04-18-2008, 10:48 PM   #12
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Re: Spina Bifida Occulta?

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Originally Posted by momto3g4b View Post
Spina Bifida Occulta is nothing to be alarmed about in and of itself. It means there is a defect in how one or more of the vertebra formed in utero. However, a super-deep dimple COULD indicate a tethered spinal cord and that will be determined via MRI, which is why (I'm sure) your child is having one done.

I have 3 children who have SBO along with tethered cords (which have been surgically released) and they have a condition called chiari malformation, too.
SO if it is tethered would you be able to tell by how his legs move and stuff or no? WOuld it always require surgery? what is the chiari malformation? is it SB-O realted?

I also have a son with spina bifida, but his is way more-involved than SBO and has caused nerve damage and bladder/bowel dysfunction. He also has chiari malformation.

Let us know how your kiddo's MRI turns out.

Oh ~ if your child DOES have SBO and you decide you want to have another baby, be sure to take 4000 mcg (NOT just 400 mcg) of folic acid every day for at least 2 months prior to conception and then the entire first trimester, as well. Buy 800 mcg tablets and take 5 per day, spaced throughout the day for maximum absorption. This is your best chance at not having another child with a neural tube defect and it's important because NTD's tend to become more-severe with each child who has one.
I was taking FA before I got preggno and during, alog with iron and b complex. Mom and dad said that they used to laugh about my crooked buttcrack when I was littl so maybe I have it and don't know. thanks for all the advice mama!
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Old 04-19-2008, 12:14 AM   #13
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Re: Spina Bifida Occulta?

If he has a tethered cord, then yes, you'd see signs of it. When he's lying on his back, does he resist having his legs lifted up very far?

Tethered cord can cause bladder and bowel problems ~ like bladder spasms or difficulty emptying completely or constant leaking or a sense of urgency(bladder) and constipation or difficulty pushing poop out (lacking "oomph" to get it out without a lot of effort).

It can cause pain in the lower back and legs and feet.

It can cause feet to turn inward (like pigeon-toed).

It can cause swayback.

If the cord is stuck on something or has a short/thick/tight ending rather than being stretchy, there will eventually be signs of nerve damage (that can be permanent if the cord isn't detethered) like loss of sensation or "pins & needles" tingling or loss of muscle function.

Yes, tethered cords require surgery to release them. Without surgery, there will eventually be pain and loss of sensation/function and potentially bladder/bowel dysfunction (which can be permanent). The good news is that surgery for a tight filum is REALLY simple. Seriously. For my twins, it was an only an overnight hospital stay and a 1 hour surgery. They each have a 1 inch scar on their lower backs and that's it. It's nothing like tethered cord surgery for a kiddo with spina bifida, where the spine gets stuck to massive amounts of scar tissue and surgery involves a longer hospital stay (5-10 days) and a 4+ inch incision and up to 12 hours of surgery to get the spinal cord freed again. Also, simple tethered cords (those not associated with spina bifida) rarely re-tether, whereas SB individuals can face multiple detetherings throughout their lifetime.

With a baby, you probably won't see a lot of symptoms yet even if he does have a TC. That's why it's really good that you're getting the MRI done to know for sure what, if anything, is going on. If he has a TC, you'll want to know so you can keep an eye out for bladder/bowel/orthopedic changes.

Chiari *can* be associated with tethered cord, but just because you have TC does not automatically mean you've got chiari. It's possible to have either condition separately and some just happen to get both (lucky lucky) ~ they're both examples of neural tube defects. Chiari malformation can be type 1, 2 or 3, with 3 being the worst form (and pretty incompatible with life). Type 2 is the kind associated with myelomeningocele (open spina bifida, not spina bifida occulta). Type 1 is where the bottom portion of the brain (the cerebellar tonsils) gets squeezed out of the skull and into the spinal canal, blocking the flow of cerebrospinal fluid (CSF) & compressing the brainstem. Decompression surgery is needed to make room for the brain to move off the brainstem & to allow CSF to flow freely again.

I hope that helps you to understand a bit better. If you have any other questions, just let me know. This is one subject I feel fairly knowledgeable about. LOL
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Old 04-19-2008, 12:26 AM   #14
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Re: Spina Bifida Occulta?

mama thank you so much i am ssoooo glad that we chose to do the MRI now after what you have told me. His one foot turn sOUT really bad but the ped said that was okay? we will know everything come July though!
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Old 04-21-2008, 12:23 AM   #15
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Re: Spina Bifida Occulta?

Dh has occulta, as does one of his brothers that we know about. Dh didn't know until he fractured his back playing football and had an x-ray done. He had no symptoms at all. His bro does have symptoms, mostly just back pain, which is why they checked for it in the first place.

I also have a daughter that has Myelomeningocele/Hydrocephalus/Arnold Chiari II. She did NOT require surgery for the Chiari, it is not always necessary, only if the kiddo is showing symptoms. DD is asymptomatic, except for a strong gag reflex, which is no biggie.

When we had genetic counseling while I was pg with dd, they told us that there is no genetic link between SB Occulta, and myelomeningocele. So, even though dh has occulta, it had nothing to do with dd's SB.

Actually, we found out while I was pg with ds that I have MTHFR, which is a gene mutation that causes my body to not metabolize folic acid properly. That's where the extreme intake of folic comes in. Ds does not have SB, but he does have some of the indicators of occulta, I will be asking our ped about it next week at his appt. He was thouroughly checked over after birth, and at his first check ups, but I am going to ask anyway. He has the dimple, pretty small, and his lower back seems to "bump" out more than normal. Hopefully it's nothing , and I am just paranoid!

Anyway, don't worry yourself sick until July. Occulta is pretty minor in most cases, I hadn't even heard of anyone requiring surgery for it until now. They actually estimate that 1 in 4 people have it, and show no symptoms at all. Good luck to you and your lo!

If you need more info about it, go to the Spina Bifida Association of America (SBAA), website. There are tons of links to anything you want to know!
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Old 04-23-2008, 12:02 AM   #16
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Re: Spina Bifida Occulta?

I have Spina Bifida Occulta and have found the info fascinating - thanks to all who have shared!

I was diagnosed with SBO at around 10 years of age, by an x-ray at a family doctor. According to what we were told then, I have one C-shaped vertebrae, instead of the normal O-shaped. I've always had constant low-back pain, but for years we thought it was related to Juvenile Rheumatoid Arthritis (JRA), which it turns out neither my sister nor I actually had. The SBO explains the back pain.

My doctor at the time told my mom that it shouldn't affect much. I might not be able to play some sports, and he said I'd not be able to birth and would need c/s. Well, I've never been well enough to play much in the way of sports (thanks to other health issues), but I've proved him wrong by having two HBACs! My boys have been checked over for SBO and my 2nd DS was thought to have a very deep dimple and possibly have it. Our pedi wasn't concerned, though, and we've not followed up on it beyond that.

I do sometimes wonder if the SBO affects how quickly I tire when wearing the baby, etc., and I do have significant muscle tightness all through my back (I also have nerves rubbing as they exit the spinal column in my shoulders, which causes muscle spasms). There are lots of issues to sort out for me, but I do agree that SBO is not (at least in my case!) a significant issue.
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Old 04-23-2008, 10:08 AM   #17
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Re: Spina Bifida Occulta?

You cannot take 4000mcg of folic acid unless you have MTHFR. 4000mcg of folic acid in a normal individual will cause kidney failure. I have MTHFR, as does everyone in my family evidentally. I take Folguard, which is my folic acid with B6 and B12 in one pill to avoid the constant pill swallowing every day.

But, its very dangerous advice to suggest someone take 4000mcg of folic acid per day without knowing whether they have MTHFR or another disorder that impacts how you synthesize folic acid. Normally a little extra folic acid would just be peed out of the system. So, you're more than able to take 1000mcg versus the recommended 800mcg. But, mega doses of folic acid will overwhelm the kidneys and result in kidney failure. Do not take such high levels of folic acid without consulting your physician on whether its something you need to do or not.
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Old 04-23-2008, 10:40 AM   #18
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Re: Spina Bifida Occulta?

The Spina Bifida Association of America recommends that all women who have had a child with a neural tube defect take 4mg (4000 micrograms) of folic acid daily for a couple months prior to conception and during the first trimester.

If you google information, you will find that "large doses of folic acid (20 grams/day) can result in eventual kidney damage. Folate is considered, however, to be relatively nontoxic, except in cases where folate supplementation can lead to pernicious anemia." http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/vitamin_toxicity.jsp

The recommended dose of 4 grams per day is FAR below the dose necessary to cause eventual kidney damage, which (btw) is quite different from your assertion that megadoses WILL cause kidney failure.

For those women who have children with neural tube defects (and yes, spina bifida occuta is a NTD ~ albeit it a minor one, each child with a NTD tends to be more severe in how they're affected), I believe the responsible thing to do prior to conception of another baby is to supplement with the higher doses of folic acid as recommended by the SBAA.

Oh ~ for best results, since your body can't absorb 4000mcg at one time and the goal is to have adequate amounts of folate in your body at all times, take a 800mcg tablet 5 times per day. IF you have any excess, your body will excrete it in urine.
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