One of the most challenging aspects of caring for a loved one with leukodystrophy is the range of symptoms and prognoses that leave families in the dark for what is to be expected and what they will need.  In our awareness section, we have detailed common symptoms for each of the leukodystrophies.  Here we would like to give families and caregivers general ideas and information that you may find helpful during your journey.

Keep notes.  It is critical to keep good notes during appointments, hospital stays and events at home.  At appointments, write down any changes the physician has made to a medication regimen, feedings, etc.  Jot down suggestions the doctor recommends you try, options for upcoming treatment and so on.  Since much of the care surrounding leukodystrophy addresses the disease symptoms, it is vital to know what symptoms your loved one is currently experiencing and any indication as to what makes the symptoms worse or better. 


If your loved one is admitted to the hospital, the doctors will round throughout the day to discuss the current status.  Many times they will ask the family pertinent questions- How did they do last night? Have you noticed any additional seizure activity?  Do they seem comfortable?  After spending the night in the hospital it is hard to remember what happened even an hour ago, so it is handy to have a notebook to take notes of anything new, information regarding the hospital stay, and any questions you may have.  The doctors may only stop by once per day, so it is great to have those notes handy in case sleep deprivation leaves you unable to remember.  In teaching hospitals, residents and fellows are a part of the physician team and may come by more frequently to check in on the patient.

While at home, document anything you notice that might be helpful for the doctor to know or any non-urgent concerns you wish to discuss with them at the next appointment.  Keep track of seizure activity, developmental growth or regression and changes in behavior or mood. 

Ask for help.  Ask about a social worker, case management assistance, potential therapies and options for help at home.  In many cases, when a patient is diagnosed in the hospital a social worker will come by to check on the family.  If they do not, ask your nurse if one is available to speak with.  Social workers can help lead you in the right direction for any financial burdens you may encounter, as well as many other psycho-social issues that may arise.  They can tell you about applying for social security benefits or how to apply for state offered therapies and services.  Inpatient social workers work with patients during the hospital episode, so if your family member is not diagnosed in the hospital or if your loved one has been discharged and you want to speak to a social worker, many doctor’s offices will know social workers that their patients can contact (associated with their practice, hospital, or otherwise).

Ask if there are case managers you can speak with to discuss the anticipated plan for your hospital stay and discharge.  Case managers work with the clinical teams, including social workers, to facilitate your discharge, transfer to any other post-discharge facilities (such as a different hospital or care setting), and may also set up things like home health services or medical equipment for home.  Case managers are a great contact for coordination, insurance, and authorization issues that might come up regarding these topics.


Ask your doctor for referrals to occupational, physical and speech therapy if you feel they would benefit your loved one.  These kinds of therapy are a great way to gain new strengths and maintain life skills.  Some states have programs that assist with the cost of therapies and offer qualified professionals to come and work with your loved one at your home.

Ask for help at home.  Caring for a loved one with extensive medical needs twenty-four hours a day can be emotionally and physically draining.  Ask your doctor if home nursing help would be appropriate.  Skilled nurses can come take care of your loved one day or night, so that you can attend to other needs, or even get some much needed rest.  In some cases, respite care may also be available.  Respite care is when a provider comes into your home and takes care of your loved one for short periods of time while you, for example, run to the grocery store or have an outing with one of your other children.        

© 2018 The Brooks Coleman White Foundation, Inc.