Intro

[Brie]

Hi everyone. I primarily post on MMM but thought I'd introduce myself here, too. My 3 month old son, Patrick, was diagnosed last Tuesday as having had a stroke in his left parietal lobe in utero. He also has a fused metopic suture in his skull. The only symptoms we are seeing so far is hypertonia on his right side and feeding issues possibly due to oral muscle weakness.

I am slowly coming out of shock. Does anyone have any recommendations for how to organize info from all the doctor's appointments? We have appointments with neurology, plastic surgery, rehab clinic, regular pediatrician, PT and OT coming up, and will potentially also be seeing a GI doc and hematology. And an EI referral is in the works too.

Any advice on where to start and how to organize? Thanks.

[kirra]

I'm not a parent, but I am a complex (lol at that word) patient.

I keep a medical binder with reports from all major appointments and test results. I prefer to have a section for reports, a section for test results, and a section for lab work. I also have a section with information and research on my diagnoses, but that's just because many of my doctors have never heard of them. Each section is sorted by date, with the most recent info on top. I prefer this because several of my specialists want to see the same results, and I have trouble remembering which doctor ordered which test. My binder also has a list of all my doctors and their full contact information, a medication list, and a list of when I saw each doctor.

I've found it extremely important to keep my own set of records.

[dixienormous]

Definitely binders and file folders. I also keep digital records of my own on one drive. I keep a medical binder, school/IEP binder and when she was in EI a binder for that.

My 4 year old had a stroke in utero in the deep middle brain. Everything is impacted. Global delays, global hypotonia, feeding issues... The whole nine yards. PM me if you want a "down the line" perspective.