SB Occulta – Diagnosed at 6 years old

We have a different story than most. I was 28 when I had Lili, our first of three children. She was a bit slow to meet the milestones (never crawled, walked very late, couldn’t hop, etc), but we were always told she was just a bit behind physically. After being successfully potty trained for  over 2 years, she suddenly started getting repeat UTI’s and losing control of her bladder and bowel. She started to whine of pain and “bugs crawling in her back and on her legs”. She has neurogenic bladder and bowel and the doctors suspected a tethered cord. In her release surgery, they found spina bifida occulta. It has been just over a year since her cord release and her bladder has improved but we struggle daily with stool incontinence, pain and constipation. I am VERY interested in getting her off of her laxatives and finding a natural solution to her constipation and getting her continent. She has intense medical anxiety so refuses all enemas, catheters, etc. We end up in the hospital having to put her to sleep to remove impactions and cath. She is 7 now and it has become embarrassing and traumatic for her.

5 comments

  • Hi and welcome! My LO is only 13 months old so we have not yet been down the road of potty training and bowel/bladder continence. If you have not already, you might check out the bowel management section of this website, Baby Center Spina Bifida Kids (you can search old posts or post a new one – lots of mamas here with tons of experience with bowel management), and I know that Cincinnati has a great bowel management program where they get about 95% of kids regulated within a week. As far as constipation and laxatives, I can’t say enough about blackstrap molasses. I hated giving Miralax and was finally able to discontinue once I started molasses and fish oils.

  • Hi Carey,

    I remember reading something of yours over on BabyCenter about your sweet girl’s anxiety. Reading your story now that makes so much sense. What a rough experience and at such a rough age for it. Old enough for it to be really scary and distressing, but not really old enough to understand. Poor girls, the both of you!

    I hope some of the suggestions on your Miralax thread will help.

    Also wondering what you’ve been able to do for her anxiety, other than try to stay away from the doctor! Maybe our Wellspring Hope member has some suggestions with Essential Oils?

    • Absolutely. I have a couple of kids who struggle with anxiety, and I love doTERRA oils for calming and focus. Hospitals and medical environments can be frightening, especially when your memories involve being poked and prodded and inability of nurses to start an IV. Ugh. Lavender is great for calming and sleep, however it doesn’t always work on my daughter with SB who also has FAS and autism (frontal lobe damage). Roman Chamomile is her friend:) I also love diffusing Serenity Blend in the car or our home, and rubbing it on feet at bedtime before a big gymastic meet (for my typical eldest child) or before a long clinic day.

    • Lili sees a psychologist once a week and it has helped her get through the regular appointments and ultrasounds, but she’s still a wreck if anyone has to examine her private area or any ER or new doctor visit. We use distraction and calming visual techniques, breathing exercises. And we try to put her in control as much as possible, give her as many choices as possible. She even still freaks in OT when we have to put the biofeedback stickers on. We have been in contact with Cincinnati Children’s to try to go through the bowel program but they said you have to start with a contrast enema and the child has to be awake for it. So for now it is not an option for us. When I say she freaks, she FREAKS. Screams, cries, runs out of the room, hurls insults. It’s not pretty. I’m thinking it really is not going to improve much until she gets a little older and is more personally motivated to get continent.

  • Poor baby! Of course she freaks out. What trauma.

    Has your psych tried any hypnosis?

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