I have so many questions...

[Flmom]

I will try to make this as short aspossible.

I have a three year daughter that was diagnosed with spina bifida oculta this week. I know in most cases the symptoms are very mild with this form. However , I really do not feel this is the case for my daughter.

She has severe colon issues. She had to have a cecostomy put in this summer and it still doesn't work. The constipation has been so bad that she has stopped eating and has a Gtube. She also is starting to have bladder issues. There has also been a change in her cordination. Her issue is at S1, L4 and L5. She has a huge birthmark on her lower back.

Is there anyone here that has Spina Bifida Oculta that is causing major problems? What are possible treatments?

Thanks,
Cheryl

[Summer25]

I will try to make this as short aspossible.

I have a three year daughter that was diagnosed with spina bifida oculta this week. I know in most cases the symptoms are very mild with this form. However , I really do not feel this is the case for my daughter.

She has severe colon issues. She had to have a cecostomy put in this summer and it still doesn't work. The constipation has been so bad that she has stopped eating and has a Gtube. She also is starting to have bladder issues. There has also been a change in her cordination. Her issue is at S1, L4 and L5. She has a huge birthmark on her lower back.

Is there anyone here that has Spina Bifida Oculta that is causing major problems? What are possible treatments?

Thanks,
Cheryl

Have they done an MRI of her spine? Sounds like it could either be tether cord or arnold chiari which usually comes with sb.

[LisaJoy]

Did they do an MRI? Because it sounds to me like she might have split cord malformation. With SCM, the spinal cord during fetal development divides into two duplicate cords and in some cases the two rejoin. Sometimes a bony spike goes throught the "hole" that is formed (it isn't really a hole) -- that tethers the cord. This is a relatively rare condition (1/10,000), is more common in females, and usually occurs in tandem with SBO. I always knew I had SBO/lipomeningocele, but at age 32, had my first ever MRI which showed a double SCM -- the cord splits, rejoins, and then splits again.

My neurosurgeon said that this is rare enough that many neuros go their whole careers without seeing it. So you might want to ask them to consider it.

I realize this is hard to picture -- if you google "split cord malformation" or "diastematomyelia" you will find images.

This can be surgically corrected by removing the spicule (I had it done) -- in a young child, it could result in a reversal of symptoms (I had to settle for stabilization).

Lisa

[LisaJoy]

The cutaneous marker (skin tag) is a huge red flag for SCM.

[LisaJoy]

Now that I think about it, the MRI did not clearly show the SCM -- but it lit up like a Christmas tree in a myelogram CT.

[angel]

FLMOM,

I can relate to you in more ways than you can imagine. My son has Occulta as well. His was diagnosed at birth. I have SB Myleo so of course to be on the safe side they checked him out immediatly and i mean every finger every toe he had a series of tests done his first day of life than most people have in 20 years.

He is like your child. The consitpation has ruled our lives since he was 2 years old. I will make a very long story short but when he was almost 2 years old his bowels just stopped working. I mean nothing happned. We went to the doctor every other day etc.. etc.. and they tried everything (i have posted about it on here a few times) 25 days later (and no bowel movement) he stopped eating wouldn't do anything but lay in the bed didn't move he was very very sick!! I took him to the ER demanded they do something and they put him in the hospital. 5 days later he started throwing up poop out of his mouth. After much fit throwing on my part they took him into surgery to get the impaction out which would have never came out any other way and he would have died.

We have been not quite to that point but he has been hospitialized several times and basically impacted to some degree for the past 10 years. He is 12 now and we still deal with it. He hasn't had any proceedures done because I didn't want to go to extreams until we tried everything else first. We have it under managable control now with Miralax and a cone enema every other day. We watch his diet and make him exercise a lot. The more he moves the more his bowels move. That is a great but little practiced tool for this.
As of right now he has another severe impaction. We know what to do, we know how to handle it and that is what we are doing. We upped the dose on the miralax we are doing the cone enema every other day and he walks to and from school for the exercise. He drinks whole milk because the fat in it does help with this problem, he eats lots of fruit and almost NO cheese.

My son is 12 and he has had 3 surgeries. Most with occulta don't know it till they are older but i have to wonder if some problems just go misdiagnosed or ignored when they are kids? I will be more than happy to answer anything i can and share our journey up to this point with you. I don't know about your child but if you look at my son you would never know that he has any medical problems.

Angel