An early step to help your child who is depending on you is to begin a medical notebook. I didn’t do this at first, and I greatly regret it. Begin now and build a comprehensive, dedicated place for everything related your child’s health. It makes doctors visits so much easier because you can have all that info at your fingertips when filling out all those forms. If you fill out a particularly long form, you might want to ask the receptionist if you could have a copy of your completed form so that you can have it at the ready to refer to for the next doctor's office you visit.
When you get blood work done, get copies of the lab reports for yourself. On the lab sheet, or in a dated format correlated to it, record dosages of any drugs or supplements he was taking at the time those labs were drawn.You'll find that these records give you, the expert case manager, important data for making wise choices.
If you see a specialist, get copies the those records. Specialists seldom tell you all that they observe. But it is in their notes.
Keep a sickness/symptom log. Write down the duration of any sickness. Write down what treatments you used.
Record milestones or changes in ability and learning. Later you’ll be able to see patterns, and correlate those with supplements, or treatments or therapies.
Tips from Nava's mom:
-I started an excel file with multiple worksheet tabs. I wanted a way to track things, a place to note new health info as I learned it, a way to know what to plan for and when its coming... It started small and got big!
Tab 1: Supplements. Across the top, the columns are: Generally-Preferred product, buy from, price, recommended dose; then Inventory, ordered (just did a big order), and how long supply will last; then Current Regime is dose, given as. I have listed info on supps we don't currently give at the bottom of page, adding info as I come across it so i have it to look at when something gets me interested again.
Tab 2: List of all docs, inc office hours, tel #s, patient #s, location, next time due to see
Tab 3: An easy read daily schedule of supplements for having on fridge (part of need for organizing was so she gets them spread over day now-before I wasn't organized enough to do it).
Tab 4: recommended blood tests (getting ready to get them so organizing here, by every 6 mo, every 12 mo etc.)
Tab 5: My plan for her 18 mo health visits (we travel to the next country (!) for care so I have to fit everything into a long weekend and that takes some organizing!)-This snowballed into a supplements binder too, so now i have a binder with the info summarized here, but all in one place so I don't have to scratch my brain every time we run out of supplements. I did it all with plastic sleeves so it was quick and more kid proof.
-And then therapy...I have been making my own daily worksheet for about 2 months now, its gone through 3 major edits and gets more useful all the time.
- Past supplement order receipts
- Print outs of products
- Screen shots of doctors' websites to remember who is who
- Dosage
- Wisdom on supplements from email lists and boards
- Some healthcare guidelines
- Her medical records: blood tests, prescriptions...
- Her yellow book / immunization info
- Weigh ins/growth chart
- For crawling, I made a big box for notes with space at the bottom for totals.
- For therapy exercises such as patterning, reading, hanging, oral stimulation, etc., I just made boxes of the correct # of times in the day and check them as they get done.
- I had this plus a separate place to write down what she ate, health changes, etc., but now I'm merging the 2, so the therapy worksheet with have space to quickly jot her breakfast, lunch, snack, dinner, if she had a BM, and when she napped. This will not always get filled out mind you! But getting her caregiver to write what lunch was saves me from repeating it at dinner and since we have constipation issues, having a food and BM log should help with figuring out what doesn't agree with her.
I found it helpful to see others worksheets even though I still had to make my own.
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