Posted By Posting
Sep 30, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Medical Records
With all that our little one's go through, many have seen numerous specialist and have 100's of pages of records.

What kind of organization is everyone using for this. We have tried to keep a copy of everything so that we always have it with us for quick reference, but with over 1000 pages it quickly becomes a mess.

I am organizing at the moment into a big notebook, but have found it will take several 1 and 1/2" notebooks to accomadate.

As I know for sure our hospital here is not reliable for giving records, I prefer to have it with me so that I know what the doctor actually gets or not.

When I requested a copy of my daughter's records from the local hospital we know for sure several things were left out.

They left out diagnostic test reports, the overdose that has left permanent affects, ect.

They also put things in the records that they never bother to tell you. For instance every ER visit my daughter carried a diagnosis of RAD (respiratory airway disease) but no one ever told us by mouth she has this.

was just hoping for some input.

Thanks,
Engi

Sep 30, 2008
molson1525
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
You are amazing that you are keeping it all. I don't have the storage space or the time. I have two sick children and each of them are on their third folder at the ped alone let alone the pulmo, GI, ENT, allergist, etc. So I have just had to let it go and hope that the doctors office and hospitals are honest and will forward things when needed. We are in the military though and record keeping is huge and I can go view their files at any time and have it copied for me at a moments notice if needed. I hope you find a good solution. By the way RAD is reactive airway disease. Both my boys have RAD although now we just call Nicks asthma.
Sep 30, 2008
slimfast13
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
I organize it all by month and specialist (ie: 3 month ped visit(s), tests, and immun in one folder, along with all EOB's and bills, then 3 month GE visit with all that goes with them...) I also separate any procedures and highlight any med/dosage changes within each.

I had to request SPECIFICALLY all her hospital records from EACH dept, since there was some stuff left out, and they filled in things they never did, though the things forgotten to be done were mainly my care.

Sep 30, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
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I keep all of Quinn's. She has 11 hospitalizations under her belt, plus multiple, multiple follow up specialists and multiple tests. It is INSANE!!!! We have two 1 1/2" thick binders of just medical records. Plus we have another 1 1/2" thick binder of her therapies. Plus, we have a medical journal that I put together for new doctors. It is basically a timeline of her hospitalizations, durations and outcomes plus reviews of her specialists appointments and pictures of her poops. It is only about 1/2" thick. -Sarah
Sep 30, 2008
mom2coy
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
I would do the 3 ring binder tab-seperated by specialist. I would, however, also scan everything in if you have access to a scanner. you don't want these papers to get lost. then, i would burn them to CD and put somewhere safe (i.e. safe deposit box). then, buy a cheap mini drive that you can carry with you whever you go so you have it @ your fingertips @ all times.
Oct 01, 2008
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
I'm not sure if this is the kind of thing you're looking for or not...when Mags was having trouble with reflux and ears, I started a spreadsheet. I made note of doc visits, what they were for, meds prescribed, result, etc. Then before I took her anywhere, I printed it out. The ENT was very happy that I had it the first time we saw him. It was much easier for him to look over that in a rush than her file. Now, granted, Maggie's file wasn't that extensive, but this might help you keep track of the major info that needs to be "right there" when you need it.
Oct 01, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
i keep all of emilys records although i don't have them in a binder i have a specific color folder for each specialist and i have each specialist in a chronological time line. I also have her pharmacy prescriptions in there as well. Do you have a scanner? maybe it might be worth it to go to Kinkos and scan it all on a disc?
Oct 01, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Kinko's? Scan onto disk. Oh, I wish I had thought of that a couple days ago, thanks. I wonder what the cost for !500 pages of scanning and disk would be? That is a wonderful idea. I am trying to scan and save to hard drive at home, but it is so time consuming. It takes average of 5 min. per page. I have only done 100.
Check with your
doctor first!