A Parent's Guide To Doctors, Disabilities, And The Family

Part 2

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Q: What Should You Look For When You Get to the Doctor's Office?

A: Look around. Is this office "child proof?" Are there toys for your child to play with? Are there many things he/she should not touch, climb or get into? Can you let your child move around in this office without undue restraint? Are well children separated from children who may have contagious illnesses?

How are the office staff? Do they seem open and friendly, or do you feel out of place here? Are the nurses who weigh the child, conduct eye exams and perform some of the examination functions comfortable with your child? Are they pleasant to you? Are they supportive of your needs?

Does your child seem comfortable, or at least as comfortable as any child feels in a doctor's office? If he/she is frightened, is the staff warm and reassuring?

After the doctor has examined your child, you might ask if the nurse or receptionist could take the child out of the room for a few minutes so you can talk to the doctor alone. Children who are very active can make conversation difficult for both you and the doctor. If this is not possible, ask if the doctor can phone you later in the day to discuss your child and pick a time when you can talk on the phone uninterrupted.

Q: What Should You Talk About?

A: Remember that many doctors may not have had formal training or experience in any types of disabilities, developmental delays, or family stress. There may be important cultural differences which you may need to clarify. You may need to do a bit of teaching yourself and explain your situation as precisely as possible. Try to be as unemotional as possible; professionals will discuss matters with parents who seem in control of the situation better than with parents who get overly emotional.

It would be useful to make out a list of your questions. This way, you will not waste each other's time and you will not forget any of the points you want to ask about.

If you have a school-age child who is having some difficulties in school, or who may have some special needs in school, remember that this is another area with which many doctors are unfamiliar. Just as you are uncomfortable with doctors who use many medical terms you do not clearly understand, so doctors can be uncomfortable with education jargon. Explain your child's educational needs and placement clearly. Doctors can make specific recommendations to schools, so talk about concerns you have with your child's education. Therapies, such as speech therapy, occupational or physical therapy, can be recommended by the pediatrician. Referrals to a specialist may also be in order. Some children require that medications be given during school hours or require special health care considerations. Perhaps the school nurse, therapist, teacher, counselor, principal or aide would like the opportunity to talk to the doctor; ask if that would be possible.

If you just want time to talk over your concerns about your child's overall development, say so and arrange for a time when both you and the doctor can discuss your questions at leisure. It may be a good idea to arrange a time when both parents (or primary caretakers), siblings, or the whole family can get together. If you state your needs clearly, then the doctor is better able to arrange appointments which will serve these needs.

Q: How Can Doctors and Schools Work Together?

A: Some children's disabilities may appear to have no more medical needs than other children. They may have processing problems and other learning problems which can sometimes be linked to sensory conditions which interfere with school functioning, such as middle ear infections. Medical conditions such as meningitis, head trauma, or serious ear infections can put a child at risk of learning disabilities. These are issues you may find important to talk about. In doing so, you may wish to work towards establishing a relationship between the doctor and school. You can help develop this sort of relationship by sharing school report cards, therapy arrangements, evaluations and conference reports with your child's doctor. It may also be useful to share ideas for learning and/or behavior that worked; the more the doctor knows about your child and other children with similar difficulties, the better able he/she is to help.

Other children may have special medical needs which lead to "hidden" disabilities and may require accommodations in school through the special education system. The nurse may need to be aware of children with diabetes or epilepsy, school staff may need to exercise some safety precautions with students who have spina bifida or who are medically fragile, some children may require certain dietary restrictions, and still others with physical disabilities may need accommdations in some classes. Students may require related services, resource room help, or may need special transportation. For children who are eligible for special education services under "other health impaired" categories, the doctor's reports are vitally important. In all these areas, your primary care physician can be an important member of the school team.

It may also be useful to share the doctor's suggestions with school staff, therapists, or early intervention team. Let these people know any medical information which may be important to them, certainly any changes in medication or medical conditions. If a child is recovering from an illness or has special health care needs, including stress, discuss this with the school staff as well as the doctor. You are working on team building, and all team members need to be kept informed and up-to-date. Some medical conditions can be related to school stress, such as frequent stomach aches, headaches, or skin irritations. Such anxiety related conditions may require changes in school programs or expectations. Sometimes difficulty in school can lead to psychosomatic complaints which both the doctor and the educators need to be aware of and discuss.

Q: What are the Parents' Responsibilities?

A: Families also have medical responsibilities. You, after all, are the ones who will carry out the doctor's recommendations. You are the primary caretaker of your child and to do so, you need to be sure you understand the doctor's instructions.

Take a notebook with you so you can write down any instructions, names of specialists, or suggestions and observations. If the doctor prescribes a medication, be sure you understand how it is to be given and when. Should this be taken before, after or during meals? Does this medication have to be given at school or can it wait an extra hour until your child comes home? Are there any side effects you need to watch out for? (More questions are listed at the end of this article.)

If the doctor refers you to a specialist or requests tests be done, ask how this test or referral will make a difference in the treatment of your child. What information is needed to help this child and how will this referral supply that? Ask the doctor to help coordinate this referral and/or tests so they will be conducted efficiently and will cause as little trauma for your child as possible. For instance, if blood tests are necessary, can all be done at one place so blood will only need to be drawn one time? The object is to get the maximum information with the minimum discomfort to your child.

For families using clinics, case management may be a difficulty. While one role of a primary care physician is that of case manager or overseer of all medical and medically related services, you and/or your family may need to become the case manager if your primary care is handled by a clinic. In some instances, case management may be available through the nursing staff of the public health clinic or arrangements may be made by them. Again, this service varies in each locality and is dependent upon certain criteria. Some clinics have social workers on staff who can work with families to help coordinate services. If your child is an infant or toddler (birth to 3 years), Public Law 102-119, Part H, The Early Intervention Program for Infants and Toddlers with Disabilities, may be helpful in this area. You may find it useful to contact the early intervention representative in your state or local area, or the Bureau of Indian Affairs if you live on a reservation. In some states, this information can be found by calling your local school, or the Special Education Director, or by calling the local Health Department, listed in your telephone book. If you would like more information about early intervention services available under Public Law 102-119, you can also contact NICHCY.

Public Health Departments, IHS, and clinics are organized differently in different areas, however, all can provide medical records to you and to anyone else you ask them to send the records to. If you are involved with several specialty clinics, doctors and/or therapists, be sure one is getting reports from all the others. This is important so tests aren't unnecessarily repeated and so medications are monitored. In general, the local clinic who first saw your child and who referred you to the specialists would be the clinic to keep all the records. If the doctor at the hospital where your child was born is the one who originally referred you, you will need to ask if this doctor is now the primary care physician or if you need to visit your local clinic and establish yourself there. The important thing is to be sure someone has all records in a single location and can provide needed information to specialists and any new doctor seeing the child. This person may be you.

Remember that it is often difficult for a pediatrician to say, "I don't know." You should ask all the questions you need to feel comfortable that you understand all recommendations and diagnoses, but you need to also be aware that not all of your questions can be answered. In a team effort, everyone needs to take his/her turn listening and understanding.

Q: How Do You Evaluate the Situation?

A: Evaluating the situation is an ongoing process involving team effort. Families see their child most, then schools (if the child is school age), and then the therapist(s); a doctor sees the child infrequently. Therefore, families are the primary evaluators of their child's progress, with the reports of schools, therapists and others. Children frequently behave differently in school and at home. It is important for everyone to communicate openly. Teachers and therapists report regularly; if you feel you need more information from school, you can arrange to meet with your child's teacher(s) and/or therapist(s) to discuss your concerns. Information from the family/school team can then be presented to the doctor, if appropriate, and he/she can join the team for some decisions or suggestions. Since the doctor is the only team member who has no opportunity to observe your child "in action," you must report all relevant information accurately.

Evaluation of the doctor or clinic is a parent responsibility. With the list of needs discussed earlier in this article, you can develop your own criteria of satisfaction. Establishing a good partnership with your child's doctor is the overall goal. This will take some time on both parts. You and your child's doctor should have mutual understanding of needs, schedules, perceptions of emergencies and non-emergencies, etc. It is usually worthwhile to work on your relationship with your child's doctor, discuss any concerns or specific needs you may have, and to change doctors only if you feel that he/she is unresponsive to your child.

To Summarize...

Your child may be seen by several doctors, clinics, and hospitals. Ultimately you, his/her family, are the case managers of your child's services. Your case manager duties are likely to include choosing a pediatrician, developing a relationship with him/her, evaluating the situation, and maintaining any records that result from the visits. Detailed record keeping is a vital part of your responsibilities. While the primary care physician and/or tertiary physician or clinic will maintain files for their records, you should maintain your home files. Your home files could be as simple as a box full of medical records or as sophisticated as you choose to have it. Most importantly, good communication and rapport among your child's team -- you, your child if appropriate, primary health care provider, early intervention team, school personnel -- should lead to quality care for your child.

Questions you might want to ask BEFORE THE DOCTOR HAS SEEN YOUR CHILD:

Questions to ask on the phone when interviewing doctors.

1. 1. Do you see children with disabilities in your practice?
   
   
2. 2. Do you have experience with children who have (describe your child's disability)?
   
   
3. 3. Would you be comfortable working in a medical team situation with other doctors who will be seeing my child?
   
   
4. 4. Can you schedule extra long appointments?
   
   
5. 5. Who sees your patients when you are not available?
   
   
6. 6. Which hospital so you use for patients who require hospitalization or hospital tests?
   
   
7. 7. What are the facilities of this hospital for children and families like mine? If my child were hospitalized, would I be allowed to stay with him/her?
   
   
8. 8. After you've examined my child, can you arrange for one of your staff to watch him/her for a few minutes so we can talk alone?
   
   
9. 9. Would there be any additional charges for any of these arrangements?
   
   

Questions to ask when scheduling an appointment for your child.

1. I will be needing a longer appointment than most families. Can we schedule a time when we can have a double appointment?
   
   
2. My child has difficulty waiting patiently, is the first appointment of the morning available or one right after lunch break?
   
   
3. If you don't make appointments, what times of day or which days of the week are least busy?
   
   

Questions to ask when the doctor has seen your child:

Questions about an illness:

1. Can you make a diagnosis at this time?
   
   
2. Would you recommend a second opinion or a specialist for this illness?
   
   
3. Should anything be done immediately? What should we be doing over the next few days? Are there any long term needs/concerns?
   
   
4. When will the child begin to feel better? How long does this illness usually last?
   
   
5. Are there any symptoms I should be aware of to monitor this illness? What are the indications that he/she is getting better? What are the indications of any complication or worsening?
   
   
6. If I do notice any signs of complications, how can I contact you after office hours? In an emergency, whom should I call?
   
   
7. When can he/she go back to school? Are there any special precautions which the school should be aware of?
   
   

Questions about general check-ups and development:

1. Is he/she within the range of normal height and weight for his/her age? Is he/she growing at a normal rate?
   
   
2. Is he/she developing normally in the areas of physical abilities, speech, vision and cognitive development?
   
   
3. What are the age ranges typically during which children develop these abilities? Am I right to be concerned at this time? When should I become concerned?
   
   
4. Do you think some developmental screenings should be done at this time? Do you administer any of these tests yourself as part of the regular check-up? (If the answer is no, you may want to have the doctor write a report indicating a concern over development in a particular area which you can send to the school staff working with your child to request that they test your child or arrange for appropriate testing. If your child is not school age, you may request these results be sent to the school system to request early intervention screening.)
   
   
5. What are the next developmental stages we should be watching for? What can we do to help our child?
   
   
6. Should we be consulting with the early intervention program and/or therapists for our child? Will you collaborate with the school by sending copies of your evaluations or writing a report specifying my child's delays which I can use in talking to the local school system?
   
   
7. Can I give the school or early intervention team your phone number so they can call if they have any questions?
   
   
8. Do you think we should be consulting with any other specialists at this time? If yes, what are your recommendations?
   
   Can you refer us?

Questions about medications:

1. When should I give this medication?
   
   
2. When the prescription says "three times a day" does that mean every 8 hours including during the night, or three times during the daytime?
   
   
3. When my child goes back to school, will he need to take this medicine during school hours or can it wait until he gets home at (time)?
   
   
4. Should the child take this medication before, during or after meals?
   
   
5. Are there any foods which should not be mixed with this medication?
   
   
6. How long should he take this? Should he finish the bottle or stop when the symptoms go away?
   
   
7. (If your child has other medications he is currently taking) My child is currently taking (medication). Can he take this medicine at the same time?
   
   
8. Are there any possible side effects or allergic reactions I should be aware of? How will I recognize them? What should I do if I think he/she is having a reaction?
   
   
9. Does this medicine need to be stored at a special temperature, that is, does it go bad if the medicine gets too hot or too cold?
   
   

Questions about tests:

1. What do you expect to learn from these tests?
   
   
2. Have these tests been given to my child before? Can we coordinate any of the earlier results with these?
   
   
3. Does the school or public health clinic also do these tests? Is there any reason not to have them done there to save on expenses?
   
   
4. How long will these tests take and what is involved in them?
   
   
5. Is there anything I should tell my child about these tests which will help prepare him?
   
   
6. Can he eat before coming?
   
   
7. Are there any precautions I should take either before or after these tests?
   
   

1. Specifically, why is this referral being made? Is this a second opinion or are we seeing the specialist for a diagnosis?
   
   
2. Are there records I should take with me or will they be sent in advance?
   
   
3. Is this specialist comfortable with children like mine? Has he/she been fully informed about my child's disability or would it be useful for me to give him a call?
   
   
4. Who will get the reports of this evaluation? Who will be interpreting them? Who will be discussing these reports with me?
   
   
5. What are this specialist's rates? Can arrangements be made to help cover these expenses?
   
   

Questions to be asked about surgery:

1. What exactly will this surgery do or allow my child to do?
   
   
2. What are the consequences of not doing it?
   
   
3. Would there be any advantage in waiting to see if the situation improves?
   
   
4. How long will my child be in the hospital?
   
   
5. How long will it take my child to fully recover from this surgery?
   
   
6. Will we need any special equipment or help at home when he's released?
   
   
7. What are the possible complications or side effects?
   
   
8. Should we get a second opinion?
   
   
9. Do you think any additional surgery will be necessary?
   
   

1. Can you estimate the length of my child's stay in the hospital?
   
   
2. Who will be the attending doctors?
   
   
3. Can I stay with him overnight?
   
   
4. Is there any information I can give him now to prepare him for this?
   
   
5. When is check-in time?
   
   
6. Does the hospital have a program for children explaining about hospitals which would be helpful for my child?
   
   
7. Will this be covered by my insurance?
   
   

References

Hickson, G. B., Stewart, D. W., Altemeier, W. A., & Perrin, J. M. (1988). First step in obtaining child health care: Selecting a physician. Pediatrics, 81, 333-338.