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Special Needs
preggersINschool25
member
Medical records
preggersINschool25
member
I am coming to the realization that I need a copy of all of Grant's medical records going back to his newborn screen. He has had medical tests ordered by 2 Pediatricians, we switched at 6 months, a developmental pedi and have had tests done in 2 cities. I feel like it is necessary for me to have because I constantly get asked by doctors the result of this or that test and I can only tell them in layman's terms. Perhaps I am leaving important info out. If I have everything then I can show them the reports.
Where do I start?
Where do I start?
This discussion has been closed.
Re: Medical records
I would start by making a list of all the doctors you've seen. Does your current pedi have records back to birth from the first pedi, or not?
Then, start making phone calls and asking what you need to do to get copies and/or get them transferred to the proper offices. Sometimes you may need to make a written request. I think some offices charge for records, sometimes a per-page fee, which can get pricey pretty quickly. Some may have electronic document systems and maybe you can get online access or have PDFs emailed to you, but IME that's still pretty rare.
Once you've got them all, or at least the most relevant ones, I'd start carrying a binder to appointments with copies of them, preferably with at least one extra copy of each document so you can hand them over without depleting your binder.
If you can, I'd also scan copies for your own permanent records and for professionals who ask to have them emailed; I run into that a lot, especially at the beginning of a relationship with a new therapist.
I'm able to get by with scanned documents and a file box, for the most part, but I'm contemplating a binder just so I can keep the latest information easy to find instead of having to sift through file folders. My SIL, who also has a child with SN including significant medical needs, keeps herself organized with a binder.
DD1, 1/5/2008 ~~~ DD2, 3/17/2010
What she said.
We have a binder divided into sections: Neurology, Genetics, Eyes, Ears, Therapies, etc. I made a one page Milestones List becasue I kept getting asked those questions too..I would be happy to copy/paste the milestone list if you want it.
Before appointments I fill out an Appointment Checklist with questions I want to ask and use it to take notes during the appointment. I always get copies of every test and a report after every appointment. It goes into the binder. Older stuff gets taken out and put in the file cabinet.
I haven't needed to make copies. Most Drs are happy to make a copy from yours. His NICU discharge papers/notes I gave to doctors alot in the first year or so.
I also have business card holder sheets in the front. Anyone who has clapped eyes on Nate goes in there. You never know when you may need to call them (for records or another appointment) or to refer them to a friend
We have one of those clear zippered pencil bags (that go in a binder) to hold the disks of MRIs, his immunization booklet and pen/pencil. A copy of the MRI disks is in the lock box.
Milestone List C/P to your own document. I pulled this list from a genetics study we were doing, from a list a mom put on a Corpus Callosum website and there is some stuff on there with asteriks that were important to me/Nate or stuff I felt worth a notation about...NOT all of these are "official" milestones. Use whatever works for you
Name:
Current Age:
Gross Motor
Rolls over: To back=_months To tummy=_ months,
Sits unsupported: _ months
*Scoots on Butt: _ months
Crawls: _ months
Pulls to stand: _ months
Cruising: _ months
Crawl stairs: _ months
*Walk with walker: _ months
Stand from floor: _ months
Walk: _ months
Walk Up Steps(with handrails): _ months
Walk Up Stairs:
Walk Down Stairs
Run:
Hop/Jump:
Pedal tricycle:
Fine Motor
Reach for objects: _ months
Pincer grasp:
Feed self with fingers: _ months
Uses spoon w/o help:
Scribble:
Takes off socks: _ months
*Initiates Peek-a-boo: 21 months
Points: _ months
Waves: _ months
Claps: _ months
*Opens & Closes hands (signing): _ months
Three piece cut-out puzzle: _ months
Five piece cut-out puzzle: _ months
Draw a circle
Draw a Square
Put on own Shoe:
Hop/Skip
Language
Coos: _ months
Laughs: _ months
Giggles: _ months
Babbles: _ months
Says Mama/Dada:
Signs Mama/Dada: _ months
Understands ?No?: _ months
Responds to Simple Instruction:
Says 1st word: _ months
Says 5-10 words:
Two word combination:
Talks in sentences:
2 way conversation:
*Signs first word: _ months
*Two sign combo: _ months
*Three Sign Combo:
Social Adaptive
Eye Contact: _ months
Smile: _months
*Finds Tummy/Bellybutton: _ months
*Moves to Music: _ months
Imitate Sounds: _ months
Points (shared interest-TOM):
Toilet Trained:
Interactive Play:
Imaginative Play:
I have no idea what is up with the different text sizes. Feel free to ask me any questions regarding my milestone shorthand...Enjoy!
Thank you for both of your suggestions. I feel like I could have been doing better with all of this from the start, but I'm a ftm with no guidance so I am just proud of myself for getting this far this early.
I visit and reprint the milestone list every 4 months or so. It It really depressing waiting for them to happen. They do happen and some pass you by and you have to remember what age. That is fun. I don't focus on when the milestones should happen. I just like to check them off when/if they do
ETA: You can also break down the "milestones" I am breaking down the Steps ones into smaller chunks (two hands held, one hand held with railing, railing and one hand on step above, etc) progress is progress :P
I have a giant binder but I don't have close to all of her records. Maybe 20% IF that. I have all of her regular pedi records and then pieces of this & that. It's kinda just all thrown together in one 3 inch mess lol. I would just make sure when you call you tell them it's for continuation of care, say they have multiple specialists who want to see this and they are asking that I keep track of it, etc.
We only had a lot of trouble with one specialist at a hospital we rarely use and they made us pay even to send it to the doctor. Then our old pedi here wanted us to pay close to $100 to get both girls records. I was having to have them fax them once a week to a specialist and it was getting old, quick. I was so pissed after they lost the request forms for myself that when I filled them out again I wrote something to the effect of this is exactly why we are leaving the practice to consideration for children with special needs, etc.
We got them for free. lol.
Many places will let you fax the requests as well if you have a machine, that can save some time.
Another tip for getting records is to ask your pedi what reports have come in since you last visited. He/She is usually cc'd on any reports the specialists write. I call her office before I call the ophthalmologist for his reports because he is anal about sending them out to parents..i.e need a request in writing etc etc...Her people are glad to fax something over to me.
Why the heck the parent cannot get a copy of the office visit report automatically is beyond me. We are the consumers dammit!
Some of Nate's specialists are good about emailing reports. If you end up using a lot of specialists at one large medical center, you can develop a relationship with medical records and get stuff pretty easily. Kennedy-Krieger is awesome at sending office visit reports automatically. We ususally get them mailed or emailed to us about 2 weeks to a month after the appointment.
Another tip regarding emailing doctors: They may have an email listed on their business card, but that email may not be the main account they check. I learned this the hard way and tried to email a video of possible seizure activity to our neurologist. I should have emailed it to his John's Hopkins email and not the KKI one. The nurse I spoke to in his office clued me into this....
I do something a bit different, though slightly related...
About a 9 months ago, DH went to a symposium on special needs. There, he talked to many different people from lawyers to financial planners.
One thing the lawyer said that really stuck out to DH (and to me), is that every year, you should create a document which is all about your child (in case you pass away and someone else has to take over care of your child). This document should lists your child's doctors, describe their routines, touch on your child's likes and dislikes, etc.
In May, DH and I took a 3 day vacation for our anniversary, and I created the document for my parents to use since they were watching Lily while we were away. And, I guess it worked well, because at one point during our trip, Lily was pulling on her ear, and my mother thought she might have an ear ache. And, due to the binder, my mother was able to contact Lily's pediatrician and get everything squared away before we even knew anything (FYI, Lily did not have an ear infection. The Pedi told my parents that since there was no fever they didn't have to come in. And, I am sure if Lily did have a fever, we would have known about it right away).
I think someone could easily combine this document with a medical binder. The sections of our "All about Lily" manual are listed below...
Permission to Treat Release - if you are going away, but your child is staying with someone.
Insurances - What insurance does your child have? Where are the insurance cards? What's the insurance contact information? What are your co-pays?
Medical Consitions - List all of your child's medical conditions and provide a brief description (list symptoms).
Doctors and Therapists - List names, specialties and contact information for all doctors and therapists.
Medications - Provide name of medication (provide common name if applicable), dosage, when it is given, why it is given, where it is stored and if there are any major side-effects. Also provide pharmacy information.
Prior Surgeries and Hospitalizations - List all prior surgeries and hospitalizations. Specify what the surgeries and Hospitalizations were for, and how long your child stayed in the hospital.
Caregivers - If your child has any other caregivers (family members, friends, day cares) then list them here. Make sure to provide contact information and any special considerations (i.e. Daycare requires a legal guardian signs the child out).
Therapy - List the therapies your child gets. Provide the therapists name, where the therapy takes place, when it takes place, and why your child gets it. You could easily include a milestones check-list here. But, don't forget to mention if there is a copay to pay, or if there is a special sign-in/sign-out procedure.
Respiratory - Here, I list specific details about Lily's respiratory status (where special equipment is, what it's used for, how it's ordered, how to manage Lily's care including how to change the trach and ties. And, I list some examples of respiratory distress, as well as what to do in those instances). You could put a section devoted to a condition your child has.
Feeding - What does your child eat? What will your child NOT eat? Are there special considerations when it comes to feeding your child (i.e. Allergies, aspiration risks, etc.)? If you are a G-tube Mommy, you would want to mention if your child is pump fed or bolos, how the extension is hooked up, what your child eats (i.e. if your child is on a mixture of purees, then you would want to list the recipe here), when your child eats, and how much s/he eats per session. Don't forget to mention if your child gets free water throughout the day.
Sleeping - When does your child sleep? Where does your child sleep? Do you rock him/her to sleep, or do you have a special bedtime routine? What about naps?
Favorites - What's your child's favorite activity? What's your child's favorite toy? Does your child have a favorite book? If your child is not mobile, does your child have a favorite position for play? If your child watches T.V., does he or she have a favorite TV show?
Schedules - This is a quick Exl file which lists each day of the week, and your child's schedule for that day (therapies, school, feeding times, typical nap times and bedtime). If you are creating this document for someone else to watch your child for more than 24 hours, then you may want to add travel times from your house to their various appointments.