Chances are, if your child was just given a new diagnosis, you’ve been sent to one or many specialists. Your head is probably spinning with all of the appointments, referrals, etc. and if you’re anything like I was when my son was born you have a pile of this stuff somewhere and find yourself shuffling through it every time a new person seeing your child asks you for something. Do yourself a favor and keep your paperwork in one place. I must give credit to my husband, who created a binder when our son was in the NICU to help us stay organized. This included business cards of specialists that saw our son in the hospital, referrals, and copies of important test results. It may take a little time upfront (time that none of us actually have when going through something like this) but you’ll save so much time and aggravation in return.
If your child is being seen in the same medical network for all of his/her care you may not to worry as much about keeping too many paper records, but if you are being seen at multiple offices that are not part of the same network, don’t assume that all of these doctors are communicating. My advice is to keep hard copies of everything or scan everything. In either case, create one folder/binder for the medical portion and one for early intervention/therapists if your child will need those services. If your child goes to the hospital for a test, ask for a paper copy of the results. You may end up needing a copy of it later on to qualify for certain services. If it is a CAT Scan, EEG, MRI or similar test, ask them to put it on a CD for you so if you go to a specialist outside of network they will have it. I hate to keep sounding so cynical, but DO NOT assume that medical offices have sent your child’s records. The last thing you want have happen is to drive over an hour to see a specialist and find out he has no clue about your child because he never received the records. TRUST ME, it will happen so take matters into your own hands and take the records with you. If you’re not able to do that, at a minimum, call before your appointment to confirm they have the records.
If your child is taking medications, keep a list of the medications, the doses, and how many times a day he/she is taking it. This will make help when you see new doctors so they can verify the medications spend more time evaluating your child and discussing the diagnosis and plan. *Stay tuned for a future post on creating a medical summary for child.
If your child is being evaluated for early intervention services, keeping the initial evaluations for each discipline (i.e. PT, OT, ) is a good idea. If your child eventually improves and does not require such services then you can have a shredding party and get rid of it! But, until then, you may need to give in and be a paper-hoarder for the short-term. If your child will require services on a long-term basis, you may need some of these records later to qualify for state-funded services or to obtain school-based therapies, etc.
I created a spreadsheet listing each specialist, their address, phone number, and fax number not only just to have for myself but to give out because I found I was frequently being asked for this information when starting different services. Keep the info organized by whichever method makes sense to you, but I can be sure that you will need this info!
