Urology, Cathing and Spina Bifida

I have a admit that I am guilty. Bowel and bladder dysfunction are the most talked about yet least talked about; conflicting problem associated with spina bifida. At any gathering, us moms, will eventually talk about pee and poo. So many emotions and cultural predisposing ideations. If our kids had diabetes 99.9% of us would be giving our kids insulin.  Yet when it comes to bladder dysfunction, so many of us will wait and wait and avoid testing and stall and try for second and third opinions. I know of nothing that gets more comments on an SB site then a question about pee or boo.

We all know why we stall. No one wants anyone between the legs of their little girl or boy. We are taught from the time we are little until the time we are adults that certain areas are private, no touching. And then suddenly, someone is telling us we need to invade that space every 4 hours for the rest of our kids lives.

I think it would help if us parents had more facts right from the get go. I admit that of all the areas about spina bifida, I know the least about bladder dysfunction. My child is 17 years old and I still do not know what all the test are specifically for, or the verbiage associated with this or that procedure. When Mel was younger, I shied away from the conversation with the medical team.  I did actively discussed this difficulty with fellow SB moms.  That’s not always good medical care.  As Mel got older, it was easier to ask Mel’s medical team for additional information. That’s important. Information from those with medial knowledge is important.

The idea of this blog has spurred me to get more facts. I will list the resources I have found at the bottom of this blog. Is my data correct? Ask your medical team!   Surely we all know by now that what we read on the internet can be inaccurate.

Good News. From what I can tell somewhere between 5% and 15% of kids with spina bifida will achieve dryness without cathing or medication. Over 90% of children with spina bifida will have a normal upper urinary tract (kidney and ureter) at the time of birth.  🙂

Bad News. Without follow-up, half of the 90%, mentioned above, will suffer considerable upper urinary tract damage due to lower urinary tract (bladder and urethra) difficulties. Most people with Spina Bifida need catheterization and/or drugs for complete bladder and bowel control.  😦

Let’s face it. Children with spina bifida usually have damage to nerves that control the bowel and bladder. These nerves exit the spinal cord between the sacral levels. The sacral nerves control some of the muscles in the feet, bowel and urinary bladder. The more your child can move his or her feet, the higher chance he or she will be one of the 5% whose bladder nerves were spared. Good for you guys 🙂

The goals of any urologic care and management is maintaining normal renal function and gaining urinary continence. At age 50, we want our kids to have their own kidneys.  With proper urologic management, children at risk for renal damage can be identified early.  With early identification, comes intervention to prevent long-term damage to the kidney function.  Your kidneys are not something to mess with.  Ask anyone who has had a transplant.

More Good News. The age at which children obtain urinary continence varies, but around ninety percent  will be continent, during the day, by age 5. Continent and kidneys for life is the ultimate goal.

What are the common urological problems in spina bifida: urinary infections, urine backing up into the kidneys, and swelling of the kidneys from urine backing up and incontinence.

Why do these problems happen? Nerve damage is the root cause. The nerves that control the bladder and sphincter muscle may not work properly. The bladder is supposed to fill and store urine at low pressure and empty every few hours. If the bladder and or sphincter muscle do not work, the child is at risk for irreversible kidney damage.

Medical research over and over again tells us that children born with spina bifida can, probably, keep and use their own kidneys for a lifetime.  To achieve this good urological treatment is essential. Without repeated testing and regular urological care the following are likely to happen:

  1. The bladder will be  overworked. The more overworked it is, the harder, more rigid, wavy, and bumpy it becomes. This, over time, will shrink the size of the bladder (not reversible), and also change what it can hold.  This means leakage, and potential reflux.  Reflux equals kidney damage.
  2. The kidneys will get damages (scaring) and need replacing. That sounds fun
  3. The child will not be able to achieve continence and that, my friend, is noticed by peers.

The best plan of care is to ask questions, get your information from medical professional and research using medically knowledgeable sites. To learn all about the different tests, what the test are for and such, I recommend you start by looking here:

http://chad.dartmouth-hitchcock.org/urology/urology_parents_urological_spinabifida.html

Then visit your child’s medical team and ask good questions. Over the years I sure have learned it’s best to ask questions and not shy away from my child’s medical team. Most are happy to explain how and why they do things. I happen to be one of those mom’s who tend to buck the system and try to reinvent the wheel. That is ok.  However,  I need to be careful because my child’s quality of life may be affected if I talk without listening. If I push for my way without facts. Yes, some clinics tend to use what I call “cook book” plans of care. As I have gotten older, I have come to realize that “cook book” has medical science to back it up.  I have to learn to listen better.  My child is watching and in 2 years, she will be running her own plan of care.

My recommendations:

  1. Do not avoid due to fear
  2. Listen with an open mind and always
  3. Always ask questions

You are your child’s best advocate. Strive to also be the informed advocate.

http://www.spinabifidasupport.com/urological_care_mgmt.htm
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2335291/
http://chad.dartmouth-hitchcock.org/urology/urology_parents_urological_spinabifida.html
http://www.ncbi.nlm.nih.gov/pubmed/16458416
http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8031517/apps/s/content.asp?ct=12072875

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15 thoughts on “Urology, Cathing and Spina Bifida

  1. excellent post! As a person with bladder and sometimes bowel incontinence I can say it certainly is not easy to deal with. However, for my personal journey, I choose not to take any kind of retention medication (ie. Ditropan) simply because, as with most medications the side effects just suck. I learned from an early age that such side effects were effecting my concentration at school, especially in the primary school age, so I stopped taking it by the time I was 12. When it comes to infections and such, I have my urine tested pretty regularily, once every two months or so and if it turns out I have an infection I will go on a medication like Macrobid or Macrodantin or simply take cranberry pills and drink cranberry juice. It likely doesnt take the infection away completely, but it really does help the bladder and kidneys and reduces the severity of such infections. I think unless one uses a sterile catheter for every single cath process, the risk of infection is always going to be there, and thus a small infection may always be there but that is an opinion, not medical fact. What is a fact is that sometimes catheters are so damned expensive that impossible to use a sterile one every time a person caths. For example, mine are $130 for a box of 24, so doing the math, that doesnt even give me one per day. More like one per 3-4 days, just to make the entire box last a bit longer. Anyway, as I said, great post, loving your blog so far.

    I was wondering, does Mel have a blog. I would love to hear things from her perspective 🙂 just sayin., and yeah, tell her a wordpress blogger wants to hear from her! haha 🙂

    • Caths are a painful expense. I to struggle with one time use or multiple use for Mel. No she does not have a blog. Thanks for reading

      • I also thought of an interesting question as I am sure it varies for many, but at what age does a parent teach their child with sb to cath for themselves? Personally I was around age 6 when I started taking care of my own cathing schedule and such.

      • Mel was 5 or 6 when she started cathing on her own. We started her getting things ready and the clean up around 4. Her medical team indicates the earlier they start participating, the easier it is for them to just feel like it is part of their routine.

  2. My son is 16 months old, and we just started him on Ditropan and we cath him 4x per day. We also just started him on Miralax as well. Like you said, I think it is so important to ask many, many questions to our doctors. I find urology one of the most confusing aspects of SB’s associated conditions. That is interesting that you should mention how we deal with teaching our kids appropriate touching when they get cathed 4x per day. I admit, I think about it! I think we will just have talk about it a lot, and tell him that if he EVER feels uncomfortable, even if it is a doctor, we will always listen. He has the right to speak up and go with his gut. I try not to borrow trouble and worries from tomorrow, and to trust in the Lord one day at a time. It can be overwelming, but it is all so very worth it.

    Thanks for posting.

    Kim

  3. I know an olymic medalist. She caths yet mentioned she changes sheets 3-4 times month due to accidents. She is married. She indicated she accepts life as it is. Changing sheets is no big deal. Her life is wonderfully enriched. She loves who she is and all her grand adventures. In speaking with her, I realized it’s all about attitude.

  4. I was on a plane once with a bunch of college wheelchair athletes. 15-20 males who just played ball are interesting. That was a trip. 🙂 I mention it because they were cathing in baggies. They were very discrete. I only figured it out because I could not figure out why they were asking each other for baggies (empty). So I watched and after one got a baggie, his chair partner would turn his back and block view. I never asked and would probably not of kown if my son did not cath. Just thought it was interesting how simply normal it seemed to them. the benefit. They did not (probably could not) get to the in plane bathroom.

  5. facebook has a nice group called “neurogenic bladder/bowel and incontinence” I joined because my son has a tethered spinal cord and is watched by a spina bifida type team (its called meylo clinic) to make sure he keeps control as he grows. the facebook group seems like a great place for answers if you can’t get to your doctors right away, but so far (crossing my fingers) I haven’t needed it yet.
    This post opened my eyes a little about watching my son closer. I never really thought about it going untreated and leading to him needing a new kidney. We’ve been through one surgery and that’s enough to last a lifetime. He has had reflux in the past but as of now it is gone. 🙂

  6. Very interesting about the ability to move the feet being an indicator of bladder control. Something I have never heard before and has me thinking about how that could help people who do not have SB but have continence issues associated with other medical conditions and /or disabilities. Interesting how reading about experiences by people with different diagnoses can assist with understanding related issues across the disability spectrum. Thank you for sharing your thoughts and research. i found this valuable. Sincerely Anne

  7. My sister born in 1954 with Spina Bifida lived to be 34 yrs old. Mom tells me her cloth diaper was constantly wet [disposable had not been invented] until she met another mother with a boy with Spina Bifida. She taught mom how to use The “Crede maneuver – is a method when the person applies nonforceful, smooth, even pressure from the umbilicus toward the lowest part of the abdomen. The pressure is applied only downward toward the bladder. The person can repeat this process several times to empty the bladder.” [quote from internet].

    My sister and i both learned how to empty her bladder and bowel [and others too when she went to school ] . We had a routine 3 – 4 times a day.
    She was paralyzed from her waist down and had none of the necessary control, The diapers controlled the unexpected.

    We thought it strange with all the hospitals, doctors and medical support – back in the 50’s no one except this other mother — mentioned the crede maneuver?

    I didn’t see it mentioned here either…Perhaps others with spina bifida are not paralyzed? Or the method is out dated?

    Love the posts – I am learning a great deal about more about spina bifida. Boy wouldn’t mom have loved to have this kind of resource 50 years ago.

  8. What a great blog!!! Even as a nurse, I was unaware of some of the things you mentioned. Bladder incontinence is really a “least talked about” issue in my mind. When I was working in the hospital, I didn’t really feel that urology had good control of that problem. I have female urinary incontinence and even have trouble getting my colleagues to communicate about it. My doctor just says, “Keep doing the Kegel’s,” but that really isn’t enough. By the way, we do Crede the bladder in the hospital though I get the feeling that it is not always accepted as a good thing. Maybe urologists are worried about technique??? I don’t know. When I was working Pediatrics back in the 70’s, I did see a very young girl (I think she was under age 7) cath herself and with good technique…I was amazed. It can be done!!! Keep up the good work on this blog. There is so much to learn…so much you can teach…and so much more to be known in the future.

    • Thanks for the feedback. My daughter goes to Texas Scottish Rite Hospital. I think they always teach cathing. I had a nurse who once mentioned the crede but I think the Drs were concerned with urine going up into the kidneys. I am surprised at how different hospitals teach and emphasis different things. And yes Bladder dysfunction is rarely talked about in my mind, expect in circles on moms whose kids have that difficulty.

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