As your children gets older, sometimes it is hard to find a doctor that is qualified, knowledgeable, and highly skilled in the area of Spina Bifida. This also happens throughout their life from infancy/toddler stage through adulthood. Sometimes, you may need to travel to a SB clinic, a children’s hospital that specializes in SB, or other specialist that deal with specific conditions related to SB – such as neurology, neurosurgery, urology, orthopedic, nephrology, gastroenterology, physical therapy (occupational, orthopedic, neurological, and, rehabilitation, pediatric), neuropsychology, psychology, ophthalmology, optometry, possible pain management, speech pathology and a pediatrician – just to name a few. Your child deserves the best care possible for their SB and you may need a team of doctors who are willing to share information and develop a care plan tailored to your child and their needs according to their level of SB. I have some advice on how to navigate through the medical community while being organized and prepared for whatever situation you may encounter.
1. Maintain your child’s medical history. Get copies of every major appointment, diagnosis, testing (including radiology reports, blood work, and any work up done by a specialist), surgical history, medications, allergies, and all diagnosis. Maintain an organized binder by classification with all these copies of medical records. Take this to every appointment, making sure you have extra notebook paper or spiral notebook in the binder, so you can take notes at all appointments. (Also see my post “Traveling with Medical Conditions” and “Simple Medical Worksheet” because they both address how my simple work sheet is written.)
2. For MRI’s, CT scans, and any diagnostic imaging, make sure you not only have a CD with the images on it (easy to take to appointments) and the radiology report (file in your binder) but also retain the films, especially when it comes to MRI’s. Have a place in your home to store them, ex: on the top shelf of a bedroom/linen closet. This way if neurology or neurosurgery wants to compare the images to the prior ones, they can do so. Most neurosurgeons are okay with just having the CD copy, however some of the old school doctors love seeing the actual films themselves. The reason being is they might spot something that the radiologist missed in their report. Also this is a great way to show you, as a parent, and your child (when they are old enough to understand) the difference in the imaging from the prior one.
3. Before each appointment, in the binder, write down any questions, concerns, comments, changes or medical testing and surgeries, which have happened since your last appointment with that particular doctor. This is the best way to prepare for the appointment and to remember everything that you needed to say or needed more clarification on a certain test, diagnosis, or even a recommendation they had made that you might not have understood completely. I prefer to have a section for each doctor and/or field of study.
4. While at each appointment, take notes so that you remember what the doctor had said and recommended at that appointment. Sometimes we get so overwhelmed with all the information during an appointment, that we are lucky to remember half of what they said/recommended. Speak up if you have a question or concern and ask them to clarify it for you. Sometimes the medical community loves to use all the medical jargon and don’t realize that most people might not understand what they are saying completely.
5. It is always good to get a second opinion, especially when it comes to surgical interventions. There is no repercussions on you or your child by getting a second opinion or even a third. Your intentions are to find the right doctor or procedure that you feel would be best for your child and their quality of life.
6. You also have the right to fire a doctor that you feel is not the best option for you, your child and their treatment. If you feel that they don’t have enough experience, they don’t communicate well with you or your child, or you question their recommendations, you can fire them. You and your child need a doctor who is willing to work with you, your child, and other doctors on your team, to find the best treatment available.
7. You do have the right to file a complaint against the doctor if you feel one is needed, especially if they have been unprofessional or unethical. You can file the complaint with the clinic or hospital they are affiliated with or you may speak to another doctor (that you are comfortable with) and they can explain the channels of filing the complaint. If you feel that the appropriate action was not taken in remedying the situation, you can also get in touch with the state medical society or licensing board. I have been in this situation. When I went through the clinic’s procedure of filing a complaint, the minute I said that I would go to the state board, they were immediately willing to help me. I do not know the outcome of the complaint I filed, however I did let them know that if I find out that another person complains about this particular doctor, I would then take it to the state board. You should not have to deal with unprofessional and unethical doctors.
8. Go with your gut feeling. This is like your warning light going off. If you feel something is just not right with a treatment, a doctor, or with your child; go with it and find the best way to handle the situation. Again, you have the right to fire a doctor so you can obtain the best care for your child. This also applies to emergency doctor appointments or trips to the ER. If you feel that your child is having abnormal symptoms or behavior, call the doctor or go to the ER. Parents know their children the best, so it is always safer to seek medical attention when you feel something just isn’t right!!! It is always better to be proactive than to let the symptoms escalate. This way you can get a solution/intervention as soon as possible!
9. Remember, you are your child’s best advocate. Fight hard for the best treatments out there for your child throughout their life. Stay on top of doctor’s appointments, medical testing, diagnosis, and treatments. If your child is in the hospital as an inpatient, you can always call and request a patient advocate to help you. Use any and all resources you can for the best interest of your child. Also, there might be help available in your state for a medical advocate.
I hope this helps!!! Shuffle on my friends!!!!