Parents

  • Children who have Spina Bifida usually have damage to the nerves that control bowel and bladder function. Early evaluation of the kidneys and bladder is very important in order to prevent kidney damage.
  • Clean intermittent catheterization (CIC) is the central treatment to prevent damage and give the child social continence.
  • During the first years of life, it is important to avoid constipation. Proper nutrition with adequate fiber and fluids will help.
  • Since the bladder is usually affected by Spina Bifida, your child could have problems storing urine or emptying his or her bladder. Know the signs of possible urinary tract infection, and contact your health care provider if you think your child may have one.
  • Teach your child to participate in his or her bowel and bladder management program by removing and replacing clothing, inserting suppositories, and assembling supplies. Eventually your child will take over these responsibilities.

Recommended Reading for Parents

  • Bowel Continence and Spina Bifida, by Susan Leibold, et. Al.
  • Health Guide for Parents of Children Living with Spina Bifida, Edited by the SBA Editorial Review Board

Teens

  • Continue to have routine testing of their kidneys and bladder to monitor growth and function. A change in bladder function, such as increased incontinence or urinary tract infections, can signal problems from a tethered cord.
  • Establish and refine routines for successful bowel and bladder management.
  • Self-catheterization skills could be included in your Individualized Education Program (IEP). Some teens are not able to perform self-catheterization through the urethra and have surgery to create a catheterizable stoma in the belly button or on the side of the abdomen.
  • Develop a schedule or other type of reminder system for cathing or taking medications. Programming a wrist watch can help, as can setting an alarm on a cell phone so that you can “take the call.” This avoids possible embarrassment caused by needing to leave at certain times to take care of personal needs.
  • Start using a method of organizing health care information, such as the one found in the Heath Guide for Adults Living with Spina Bifida publication, available from SBA.

Recommended Reading for Parents

  • Bowel Continence and Spina Bifida, by Susan Leibold, et. Al.
  • Health Guide for Parents of Children Living with Spina Bifida, Edited by the SBA Editorial Review Board.
  • Physical Disabilities: The Ultimate Teen Guide, by Denise Thornton.

Adults

  • See a health care provider and urologist every year. Keep track of unexpected changes in your bladder program. These changes may be signs of a problem.
  • Monitor your level of dryness and any problems with catheterization. Note any changes and discuss them with your health care provider. Changes may indicate tethered cord, urinary track infection, or a bladder stone.
  • Watch out for symptoms of a urinary tract infection:
    • Chills or fever
    • Cloudy or dark urine
    • Blood in urine
    • Nausea or vomiting
    • Back pain
    • Change in urinary continence

    Let your health care provider know if you experience any of these symptoms.

  • Take care of yourself and follow through with your bowel program

Recommended Reading for Parents

  • Bowel Continence and Spina Bifida, by Susan Leibold, et. Al.
  • Health Guide for Parents of Children Living with Spina Bifida, Edited by the SBA Editorial Review Board
  • Physical Disabilities: The Ultimate Teen Guide, by Denise Thornton

Resources

Organizations that Can Help

SBA has researched vendors which provide bowel and bladder care products. These vendors offer national shipment and deal with Medicare and Medicaid. We also recommend that you research options that may be available in your region of the country for your insurance options. A vendor listing does not imply endorsement of products. This listing is for informational purposes only.

180 Medical

6000 NW 2nd St Ste 200 Oklahoma City, OK 73127

887-688-2729

www.180medical.com

Achieve Comfort Medical Equip. & Supply

370 S Fairfax Ave

Los Angeles, CA

323-852-6900

800-517-2477

323-852-6904

www.achievecomfortmed.com

Advocate Medical Services, Inc.

1202 Tech Blvd. #105

Tampa, FL 33619

813-623-1028 / 877-968-7267

www.advocatemed.com

juliov@advocatemed.com

CCS Medical

2105 Newpoint Place Suite 600

Lawrenceville, GA 30043

888-724-4357

www.ccsmed.com

Express Medical Supply, INC

218 Seebold Spur

Fenton, MO. 63026

Phone 800-633-2139

Fax 800-633-9188

www.exmed.net

EveryDay Medical

139 Fulton Street, Suite 814

New York, NY 10038

800-963-0633

Heartline Medical

PO Box 55 Hampstead, North Carolina 28443

866-791-4261

www.heartlinemedical.com