Bladder
Neurogenic bladder is the name given to a number of urinary conditions in people who lack bladder control due to a brain, spinal cord or nerve problem.
- Emptying the bladder with a catheter at regular times.
- Medicines.
- Preventive antibiotics to reduce infection.
- Surgery to improve bladder size or botox injections into bladder to treat overactivity
While neurogenic bladder can‘t be cured, necessarily, it canmost definitely be managed. Most cases of neurogenic bladder can be managed with medication and intermittent catheterization. The minority of children with the condition need surgery.
Diagnosis involves X-rays, ultrasound scanning and urodynamics( A test to measure pressures and overactivity in the bladder)
Bowel
Nerve damage may be due to an injury or a health condition such as spina bifida can cause neurogenic bowel. Symptoms include trouble having a bowel movement, belly pain, leaking stool, and frequent bowel movement accidents.
Bowel management options for people with a neurogenic bowel include:
- Medications. Your doctor may prescribe medications to manage timing and consistency of bowel movements.
- Anal irrigation. Anal irrigation is a new conservative bowel management therapy. …
- Surgical intervention.
Continence
The short answer is: most likely, no. While it’s impossible to say that your child will never have an accident, a neurogenic bladder can be managed with medication, catheterisation and/or routine examinations by his doctors, ensuring that your child will live as normal a life as possible.
Entitlements
You are entitled to a Long-term Illness Card, Medical Card, Domiciliary Care Allowance and dependent on your working situation, you can apply for carers benefit / Carers allowance as an additional financial support.
This is a community health scheme that entitles people with a specific long-term disease / disability to avail of medicines free of charge from their pharmacy.
As stated above to avail of a LTI you need to have a specific diagnosis / disability to avail of medications however with a medical card certain people can avail of health services free of charge but this card is means tested meaning you have to earn under a certain financial threshold.
This is a monthly payment that you receive to help support your child under 16 years old who has a diagnosis / disability. This allowance is given if your child requires on-going care and attention more over and above the care and attention usually required by a child of the same age. It is not means tested.
Orthotics
If you discover skin redness/irritation after taking off your child’s orthotics, you should observe the redness for the next 30 minutes. If the redness goes away in 30 minutes apply your child’s orthotics for the same amount of time the next day and observe closely. If the redness does not go away after 30 minutes, contact your local team/orthotist for a review of your orthotics.
If your child’s skin is broken down in the area of his/her orthotics, do not wear them until the area is fully healed as they may impact on the rate of healing. This may limit your child’s ability to use equipment such as a stander, mobility aids and transfers. Contact your local team to inform them of the pressure sore and to make a plan while you cannot use your orthotics.
Standers
Standers are beneficial for all children with Spina Bifida but particularly children who are non-ambulatory or have limited ambulation. Standers are important for bone health and postural management and help maintain range of movement and prevent contractures. Standers should be used in conjunction with a stretching programme. If they are not used, an increased stretching programme should be recommended. Recommended dosage will be prescribed by your local team, average recommended time is 1 hour in a stander up to twice daily. A child can start using a stander from 1 year of age once they reach the minimum height and weight requirement.
Supports
You will be linked with a community disability team who will offer supports within their organisation. If you have any questions / worries about your baby / child you can contact the team in Temple Street Hospital for advice. You also have your PHN to contact for supports. If you are need of ongoing support the Medical Social Worker is available to support you and link in with appropriate supports if needed.