Palliative Care for Sanfilippo Syndrome
There may come a time when you will need to consider palliative care for your child with Sanfilippo syndrome, and for your family. Here’s some information that may help in making that decision.
About Sanfilippo syndrome
Sanfilippo syndrome is a neurodegenerative disorder. Mutations in genes that provide instructions necessary for cells to make essential metabolic enzymes cause the disease. These enzymes cannot function properly because of the mutations. This leads glycosaminoglycans (a type of sugar molecule) to build inside cells and tissues, interfering with their function and damaging them. With time, disease progression affects the child’s brain (intellect) and nervous system, limiting mobility and other motor skills.
There are currently no treatments that address the underlying cause of Sanfilippo syndrome. Treatment approaches focus on alleviating symptoms and improving patients’ quality of life. This involves a multidisciplinary team of specialists working together with treatment.
About palliative care
Palliative care is special care for people living with a severe condition, the progression of which treatment cannot alter. It focuses on providing relief from the symptoms and stress of the disorder. Its overall aim is to enhance the patient’s quality of life.
A specially trained team of physicians, nurses, counselors, chaplains, social workers, and others work together with the patient’s doctors as an extra layer of support to provide this family centered care.
With the close communication that palliative care offers, families can make choices that align with their values, traditions, and culture.
Is palliative care the same as hospice?
Both palliative and hospice care provide comfort. However, palliative care can begin at diagnosis, and be given along with treatment. Hospice care begins after disease treatment has ceased, and when it’s clear that the patient won’t survive the condition.
Hospice care is usually only offered when the patient is expected to live for another six or so months.
How can it help my child?
In the case of Sanfilippo syndrome, palliative care can help ease symptoms that can include difficulty sleeping, chronic diarrhea, depression, headaches, seizures, pain, and possible shortness of breath due to respiratory infections.
In addition, palliative care can offer access to therapies that are likely to improve your child’s quality of life. Such therapies may include education, grief and family counseling, peer support, music therapy, and spiritual support for both the patient and siblings, and appropriate respite care.
When to start palliative care?
Palliative care can be appropriate at any stage of an illness, and be provided along with treatment to slow or ease the disease process. It is based on need, not prognosis (likely outcomes). Starting this care as early as possible can benefit both you and your child.
Flexibility in care
The decision to forgo certain treatments means that only those therapies are withheld or withdrawn. As therapeutic goals change with the progression of Sanfilippo syndrome, some interventions may not be desirable. Keeping open and good lines of communication with the child’s medical team, and careful planning, help to facilitate the integration of these changes.
Last updated: Jan. 19, 2021
Sanfilippo Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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