Preparing for appointments

There are so many questions I have for Bekah's doctors about her recent diagnosis that I am having a hard time figuring out where to start. We have a lot to learn going forward not only about her conditions, but also about how to care for her and what to expect. There are a lot of documents that other parents can find online (via Google.com or other search engine) that can provide a list where you can start asking questions. I've listed a few to help others get a head start on making a list to take with to appointments:

• Questions to Ask Your Child’s Doctor about Cerebral Palsy - http://cdn3.healthcommunities.com/hcmedia/2009/06/patient-information-cerebral-palsy.pdf
• Visiting the Doctor - What You Need To Know, What You Need To Ask - http://www.bccerebralpalsy.com/doctorvisit.htm

I haven't found any lists about questions to ask about her Dystonia diagnosis but there are quite a few available for Cerebral Palsy. Some of those same questions I'm sure can be used for both or at least to start you out in creating your own questionnaire. I'll probably post my questions here once I start a list for anyone interested in using it to form a questionnaire themselves.

You should also think about what things to bring with you to your doctors appointments. I started a 3-ring binder with all of Bekah's information including:

• A copy of your Medical card/child's card - I requested an additional copy of my daughters cards from our insurance carrier to keep in the binder in case I forgot to bring a copy along with in my wallet.
• Contact information (Names, addresses and phone numbers) - I collected business cards from all of my child's doctors and specialists that she has seen and have taped them into the binder on a piece of paper that I punched holes in. You could also purchase 8 1/2" x 11" business card holders for your binder. 
• Medical History and Documentation - I keep a log of all doctors visits including the date and time, and copies of doctors notes in the binder to take with us to appointments. These include notes from our Pediatrician, Neurologist, Physical Therapy, etc. Not all of our doctors are on the same network, so they don't always have immediate access to records, and have to request them. Having a copy available with us can sometimes speed up the process while official copies are faxed or mailed to the doctors offices.
• Prescription information - If your child is taking any prescriptions, make sure they are listed in your binder including the dates and times your child takes the medications, and any side effects they may experience.
• Mileage and Parking Costs - If you are claiming your mileage and parking costs at the end of the year - make sure to keep track of your costs on spreadsheet or other document for easy review at the end of the year when you file your taxes. Mileage to and from your appointments, or picking up your medication is allowed. You can also claim payments made for parking at those same appointments. The IRS has a list of allowable deductions here: http://www.irs.gov/publications/p502/ar02.html/
• Copays and Payments for Medications - Don't forget that you can claim co-payments (not made from an FSA/HSA since those are already pre-tax dollars) and any out of pocket costs for non OTC medications. See the IRS list for allowable deductions for more information.

I've also requested copies of Bekah's birth records from my Obstetrician's office. This is for a variety of reasons. I would personally like to review the records myself to see what's in there. I'd also eventually like someone else (possibly a lawyer) to review her records since Cerebral Palsy is considered a "birth trauma" condition and is usually caused by something that happens during pregnancy, birth or somewhere in the first two years of life while the brain is still forming. Sometimes the cause is never found.