Special Needs

health timeline/binder

Does anyone have a health timeline typed up for their LO that does a brief overview of hospitalizations, when diagnosis happened, procedures, etc?

 Furthermore, does anyone keep a binder to keep tract of all medical files? How do you organize it? DS isn't as complicated as some but I have records/notes from pedi, GI, allergist, pulmonologist, ENT and speech therapy.

I feel so overwhelmed with it everything. Any & all help would be awesome!

Re: health timeline/binder

  • I keep a binder for Carson.  I have a sheet in the front with all the important phone numbers/contact people at his various doctor's offices.  Then I have it organized like this:

    general (shot records, NICU discharge summary, etc)

    eyes

    GI

    neuro

    hematology 

    EI note sheets

     

    I also keep a note pad tucked in there for questions I want to ask and a place to take notes during appointments.   

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    Carson Henry, born 39w, 2d, via emergency c/s due to no fetal movement and fetal distress.  Seizures, IVH grade 2, brain injury, kidney and liver damage.  Complete blood clot in the artery in his right arm.  27 days in the NICU.  Now discharged from all specialists, excepts his kidney doctor, who will monitor him indefinitely.  My tough little cookie.

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  • Oh, and I did a general summary of issues for Carson's daycare provider to give to paramedics just in case.  It was fairly brief on purpose, but had his doctor's contact information and then a summary of his issues.  Also a huge note saying no needle sticks in his right arm.  It all fits on one page so it is a quick reference in an emergency.
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    Carson Henry, born 39w, 2d, via emergency c/s due to no fetal movement and fetal distress.  Seizures, IVH grade 2, brain injury, kidney and liver damage.  Complete blood clot in the artery in his right arm.  27 days in the NICU.  Now discharged from all specialists, excepts his kidney doctor, who will monitor him indefinitely.  My tough little cookie.

  • We have a family binder that I use.  Basically it says DS's name then a list of his doctors and their addresses or hospital location and phone number.  we have his pedi, GI, Neuro and Physiatry.  I need to put his eye dr on there.

    Under that is a list of medications including dosage and frequency that he takes

    then I have a list of diagnosis and a brief dated list of procedures and medical stays.  although I slacked and didn't put blood draws on it.

    So mine says 6/3-6/12/2010 "Hospital Name" NICU stay then I list why

    8/29/2010-9/4/2010- "Hospital Name" Pedi Unit for Failure to Thrive

    10/17/2010-"hospital Name" outpatient Lumbar puncture with sedation

    *this is just a small snapshot*.  Then in the following pages I have a copy of his immunization record, and any pertinent medical information.  We also have a copy of his health insurance card in there. Also, DS is not in daycare but I have 2 babysitter sheets.  One is just a generalized info sheet, mainly on handling his reflux (don't lay him down flat after eating, if he spits up/throws up its okay), and a small amount of info for emergency purposes, such as contact info for us, poison control and his pedi.  I also have a "medical care" sheet in which it basically gives permission to the babysitter to seek medical care for my child. 

    Then I have a small tupperware bin that we dump all insurance papers, report copies, etc in and I put them in to a filing cabinet by type and date, so it has one folder Sept 2010 insurance claims and they're all filed there.  Then there is June-September medical reports, etc.

    I ALWAYS keep a small notebook (maybe 4x6) in my diaper bag.  I use it to write down anything I think of, questions, an appointment change, a therapy date, something DS does etc.

    I always keep the originals and send photocopies to the providers if they ask for them.

    That hardest part is deciding HOW you want to organize everything.

    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
  • We have a binder too that is organized by speciality...neuro, eyes, ears, genetics. I have a 3 ring zip up pencil case in there too with the MRI disks and in the front of the binder is a business card filer for all the dr contact info.
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  • I have one binder that has both of my sons information and important papers in.

     For each of them I have a sheet with all their important phone numbers, I then have two months calendars printed out with therapy schedules, dr appts etc, following the calendar, I have diagnosis forms, then reports from specialists, therapy notes, insurance authorizations and insurance billings, I also carry test results and shot records with me. In DS2s section, I have hospitalization information.

    I have never thought of doing a timeline for them, it would be more useful for DS2s issues. I do however have my babysitters schedule written up in the outer pocket so I can schedule appointments around when she is available. 

    Each section is separated and stored in three ring document protectors and I just took a sharpie and wrote what each section was. It works for me.

  • I am currently working with a programmer.  He has developed a free app for smart phones to organize all of these issues - meds, warnings, history, doc's names/addresses/phones, emergency info, etc.

    He's dropping off the dummy phone tomorrow for me to play with.  I'm desperately looking forward to familiarizing myself with it, and making it available to my fellow SN moms.  It's pretty convenient having it all on a secure network with as much or as little privacy as you'd like.  

    You can also participate in webinars by specialists around the country, and network with parents of children in similar situations. 

    Prudence
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