Hello, Operator? I Need A Doctor!
By Golda Turner
You are number one
When Hashem sends down a neshama to this world, He entrusts the parents with the responsibility to raise it in the proper way. He gives us the ability and the tools to do our job well, even under trying circumstances. As one mother aptly put it—“I am not ‘just a mother’. I need to be a doctor, a nurse, a psychologist, a teacher, a social worker, a therapist, a secretary, a policeman, and everything else rolled up into one!” As parent, Hashem gives you the ‘Daas’ (the intuitive knowledge) to do what needs to be done. He gives you the ability to make what are sometimes difficult decisions. And he sends us assistance in the form of Rabbanim, doctors, schools, and organizations to help us with our job.
Your child’s Pediatrician—coordinating the team
Unless your child was diagnosed before or right after birth, chances are that your pediatrician will be the one to notice that something is not quite right. He/she will probably order some basic tests and then refer you to a specialist for further testing.
Parents need to be able to have a good, trusting relationship with their primary care physician. Besides providing routine medical care, he/she will be the one coordinating all of your child’s special care by writing referrals to specialists, receiving their reports, and doing the mounds of paperwork needed for every program--both public and private—that your child will encounter over the years.
And believe me, it is no small feat to keep on top of all of that paperwork! Pediatrician’s offices are very busy places, and are often overloaded with sick kids and medical emergencies. You, as parents, will need to keep in touch with the secretaries to make sure that all the doctor’s paperwork is completed and submitted in a timely manner. Reports from various specialists will also be sent to your pediatrician to be placed in your child’s file.
Just a word to the wise—keep copies of all forms and letters submitted both by and to your doctor in a special, well organized file, where you can easily find them when needed. As you travel from one specialist to the next, being able to pull out copies of reports and tests from your folder or looseleaf makes their job that much faster and easier! Most doctors appreciate working with people who come to appointments well prepared with information and lists of questions.
We need to go to a specialist.
Being referred to a specialist does not have to scare you. We have simply evolved from a society where your family doctor did a little of everything to one where medicine is divided into specialties and sub-specialties with scary sounding names.
Every child with special needs—whether medical, physical, mental, or emotional will end up seeing a number of specialists over the years. These doctors are highly trained and experienced in their specific field of medicine. They keep up with all the latest advances in their area of expertise. The specialist will ask you many questions about your child, look at all the paperwork that you bring him, and do some tests of his own. He will then give his opinion as to what needs to be done with your child.
It is very important to make sure that you clearly understand everything that the doctor is telling you. He will likely be using many medical terms that are a foreign language to the average person. If you don’t understand something—say so! Don’t be ashamed to ask questions! YOU are the one making the final decision as to your child’s care, and it is very important to understand what is going on and what the options are!
How do you choose a good specialist? Most likely, the first specialist you will see will be the one that your pediatrician suggested. Your primary care doctor will usually send patients to someone that he knows and has dealt with in the past. This is usually a good place to start, as the doctors already have a working relationship.
After your visit, the specialist will send a written report to your pediatrician detailing his findings. Make sure to get a copy of this report from the pediatrician’s office for your files!
Many people want to get a second opinion. This is perfectly fine and understandable. In fact, if your child has a difficult medical issue which needs to be dealt with, it is definitely advisable to get more than one opinion, as there are often many treatment options available. Most insurance companies will allow you to go for a second opinion with no problem.
The question is, who do you go to now? How do you find a good specialist?
Hello, operator? I need a doctor.
There are many ways of finding a specialist other that looking one up in the yellow pages. Our community is fortunate that it has many organizations and askanim who deal specifically with medical referrals. They can usually match a doctor to your exact needs, and help with getting an appointment set up
Before you call, be prepared to answer the following questions:
- What exactly is wrong with your child? Make sure to mention his/her diagnosis (if you know it) and all of his issues, not just the specific immediate need.
- Who did you already see?
- What tests were already done (make sure you have copies of the test results!)
- What insurance do you have?
- What are you looking for in a doctor? Do you really need the top specialist? What is more important to you—top expertise in his field or ‘bedside manner’ (someone you can talk to)?
- Are you ready to travel long distance if need be for a top specialist?
Every family has different needs and priorities. No two situations are exactly the same. You need to be clear about what you are looking for in a specialist.
Why do I say, ‘What are you looking for’? Be aware that not all doctors are created equal. As with any other type of work, someone can be the top expert in his particular field of medicine—but be very difficult to deal with or to reach when you have a question or problem. Another can be ‘a doll’, spending an hour in the office with you explaining every detail, but not the most qualified to deal with the more highly complicated medical cases. You need to be realistic and understand that, just as with a shidduch, you need to be able to set your priorities and also know where you can compromise when necessary.
Where to see a doctor can also be a deciding factor. Why? Some doctors will not take your insurance in their private offices. They may see you in a hospital clinic—but only for about 5 minutes. And this only after you waited on line three hours and your child was examined by the residents who do clinic that day. For some specialists, you will need to travel hours to a major children’s hospital like CHOP in Philadelphia or Boston Children’s. Only YOU can decide if a particular setup will work for you.
Special needs require special treatment
A word of caution is in order here. Not every specialist has the experience needed to deal with a special needs child. It is therefore important to make sure that the specialist you are being referred to has experience with your child’s diagnosis. Someone can be, for example, a very good orthopedist who can fix badly fractured bones—but know next to nothing about how various medical conditions affect the body! I once spoke to a woman who had been advised by three doctors to do unnecessary surgery on five of her son’s fingers—because they simply did not understand the affect of his disability on the body! Special therapies were more appropriate in his case. Or the mother who almost lost her child because the doctor did not know anything about the disastrous effects anesthesia would have on her child due to his rare syndrome. The list goes on—but can easily be avoided if you take the simple step of checking out the doctor’s reputation in the special needs community.
If you have called for a referral and get the name of a specific doctor, I would suggest that you make a number of phone calls to other parents of children with special needs in your community to ask if they have had--or know someone who has had--experience with him. Though everyone’s specific needs and experiences are different, fellow parents are always your best resource for information. Do not feel bad making these calls. You are not hurting or insulting anyone! Think about it as ‘asking information for a shidduch’. And, since most of us ‘special parents’ tend to network between ourselves, just a few quick calls will easily find someone who knows someone who used that doctor…even parents who are complete strangers will usually be happy to share their knowledge and experience to help a fellow parent. They will willingly tell you about their experience with the doctor and advise you how to best deal with him and his office in order to get the most out of your appointment.
Other parents will also usually be willing to spend the time explaining in simple language all the medical details that are so confusing to you. Being more experienced, they have already learned the language and have some firsthand knowledge about different options, medical procedures, medications, and therapies. They will help make you an informed consumer rather than a terrified parent—and you will be able to deal with the doctor on a completely different level.
My child has so many things wrong with him!
If you are among the elite few who Hashem in his infinite wisdom chose to give children who are what we call ‘very involved’—meaning that he has a combination of a number of medical conditions requiring a lot of care—you have probably been through some very scary weeks at the hospital after his birth. You have experienced the many ups and downs of the terrifying medical roller coaster ride that made you feel like you yourself needed a doctor!
By now, your child has probably been stabilized and you have developed a system for his care. You have probably been to more doctors offices than you care to count!
Besides assuring you that many organizations like ours are here to assist you with information, practical assistance, and chizuk, I want to give you some practical advice that comes from personal experience. You need to chose doctors not only for their reputation as specialists in their field—but also for the breadth of their general medical knowledge, their availability when you are having an emergency, and their ability to both listen to your concerns and clearly explain the various options.
When you have a child who is medically involved in more ways than one, you need doctors who understand how all the parts of his diagnosis interact. Too often, nothing is clear-cut and by-the-book with these children. Your specialists may need to be able to think ‘out-of-the-box’ and try various options like ‘off label’ use of medications or even imported medications. They may need to know about unusual things like very specialized formula or newly produced therapeutic items used for other types of diagnoses. And most importantly, they need to be willing to confer, when necessary, with the rest of your medical team in order to coordinate care.
Ideally, it would be best to have all your specialists practicing in the same hospital so they can all easily access all of your medical records and be involved when your child is an inpatient for any reason. If it doesn’t work out that way, and you may be faced with educating a strange doctor about your child’s condition.
Of course, this world is not ideal, and too often your specialists will need to confer by phone with the covering physician when an issue arises. In such cases, it is most urgent to ALWAYS have your book of copies of recent medical records organized and on-hand wherever you go. Even though there are computer programs that organize and store your records on a disc, not every hospital has every program on their computer. If their computer can’t read the disc, it is worthless! Too much valuable time has been wasted in emergencies trying to obtain copies of records from doctor’s offices!
The specialist that I want to use won’t take my insurance.
Today’s medical care has been severely compromised by the way the insurance system is set up. There are so many different plans that doctors cannot possibly deal with them all. Some companies have such low reimbursement rates that many doctors will not accept them. Most top specialists will not take Medicaid, except in a hospital clinic—but then you will wait months for a ten minute appointment.
What do you do when your child is a complicated case and you feel that for whatever reason, you must have a specific doctor?
This is where we begin to see the beauty of being a religious Jew. A friend of mine works in a well known specialty hospital. A very large percentage of patients there are religious Jews. Someone on staff once asked her, “Why are there so many sick Jews here? Is it something genetic, or is G-d angry at your people?” The answer is simple—Jews tend to go to the top for medical care. And our brethren care deeply enough to help us get there! We have medical referral organizations and askanim with good connections to top doctors. We have Bikur Cholims and all kinds of chesed organizations who provide funding and vital services for patients and their families. We Jews take care of their own!
Though we would all rather be givers than receivers, sometimes we need to give others the opportunity to do chesed for us, too. There are people in many organizations who have enough ‘pull’ to get appointments pushed into impossibly full doctor’s schedules or to get the price of services or surgeries substantially reduced to a manageable amount. There are organizations that will pay for insurance or send funds directly to doctor’s offices. And there are good people who have been willing and able to raise thousands of dollars in their neighborhoods or shuls to cover anything from a surgery to a wheelchair van. All of these warm hearted Jews-whether working for an organization or from the goodness of their hearts---will do anything to help another Jew, regardless of affiliation. They know that we are all in this together and are willingly doing their share to help their fellow Jew. And in return, they are confident that if they would ever need your help with anything that you are good at, you would be just as happy to help them out, too.
Mi k’amcha Yisroel!