Health Matters

QUESTIONS FOR HEALTHCARE PROFESSIONALS

NOTE: Because we are parents, and not professionals, we do not claim that this is a complete list of the questions you should ask.  Our first recommendation is to get a copy of one of the books mentioned on our Recommended Reading List under the “Infant Concerns” section (Stray-Gundersen is very helpful).  Read that for an overview of medical needs that are common among children with Down Syndrome (i.e., heart problems, hearing, respiratory, vision).  Armed with that knowledge, you will be able to supplement this list with questions that are specific to your child’s needs.

1. PEDIATRICIAN:

A. Do you have any experience treating children with D.S.?

B. How many patients, and what ages, do you treat who have D.S.?

C. Are you familiar with the “common” ailments associated with D.S.: skin problems, nutrition, vision, hearing, respiratory, etc.?

D. Are you willing to research/learn/follow the Down syndrome health guidelines?

E. Do you have access to the Down syndrome growth charts or should I provide a copy for my child’s chart?

F. What “special” things do I need to do for my child with D.S., as opposed to caring for a typically developing child?

G. Are you familiar with (if so, what is your opinion) on targeted nutritional intervention for people with D.S.?

H. If my child gets repeated ear infections, what do you recommend? (Note: because of their smaller ear tubes, children with D.S. do not grow out of sinus and ear infections as quickly as other children, therefore, early use of ear tubes may be helpful).

I. Which children’s hospital(s) are you affiliated with/recommend?

J. Are you a participating provider of PA Medical Assistance (PA Access Card) for primary or secondary insurance?

CARDIOLOGIST:

A. Request an echocardiogram, even if it appears that your child does not have heart problems.

B. What do we need to do for my child’s heart problems: surgery?  If so, when?  Where?  If no surgery is needed, do I need to restrict my child’s activities?

C. Do we need to take any prophylactic measures (i.e., pre-medicate before going to the dentist’s office)?

EAR, NOSE AND THROAT SPECIALIST:

A. Do you feel that ear tubes would be helpful for my child?

B. Does my child need to be on a low dose antibiotic regimen for his recurrent sinus infections?

C. Does my child have enlarged tonsils and adenoids?  If so, do you see a need for surgical removal either now or later in life?

D. Does my child need an audiogram or tympanogram?  If so, (after test is performed) is his hearing within normal limits?

E. How often do you recommend a follow up visit?

OPTHAMOLOGIST:

A. Is my child’s vision within a normal range?

B. Are there any signs of strabismus (eye crossing)?

C. Are there any signs of ambylopia (lazy eye)?

D. Is there any need for eye patching or eyeglasses at this time?

E. Does my child have Brushfield spots? (light spots on the outer iris)

F. Are my child’s tear ducts open?

GASTEROINTEROLOGIST (GI):

A. Does my child have reflux?  If so, how can we manage it?  Do we need to have tests to confirm the diagnosis?

B. My child is chronically constipated.  How can we manage this medically?

C. Does my child exhibit any signs of Hirschprungs disease? (involves chronic constipation)

D. Is my child nutritionally healthy or do you recommend a nutritionist?

EARLY INTERVENTION SERVICE COORDINATOR:

A. What services (i.e., physical therapy, occupational therapy, special education teacher, speech therapist) is my child eligible for and how soon can those services begin [the sooner the better]?

B. Is my child eligible for Medical Access and, if so, please give me the paper work and necessary information to apply for that.

C. Who are the developmental pediatricians in the area?

D. What types of support groups are available and how do I contact them?

E. What other types of places are in the area that I could take my child to for extra services if I felt it necessary (i.e. speech, PT, etc.).

F. What programs does the ARC of Chester County have that might be useful to me?