juggling multiple specialists - help?

[ktgrok]

Or maybe just commiseration? At this point, we are up to 5 doctors offices for my son. Pediatrician, neurologist, gastroenterologist, ENT, and a behavioral health clinic for a psych evaluation. Trying to keep all of them up to date on what the others have done is maddening, to say the least. At this point, I'm putting together a binder with lab results in sheet protectors, as well as a place to put intake forms I have filled out or need to fill out, and a copy of my insurance info. I'm also going to put some articles on his various issues that I've found helpful, regarding possible PANS/PANDAS, celiac, etc. And the most recent copy of symptoms, timeline, etc. 

I've also printed out a few copies of the release of information forms from a few of the offices, should get the rest I guess. 

Also, probably print up something with the name, address, phone and fax number for each office.

Any other suggestions?

Edited January 11, 2019 by Ktgrok

[Annie G]

You are doing what we did when mil was battling dementia and cancer at the same time. In addition to the folder system you’re using, I also carried a journal to every appt so I could ask questions, write down notes during an appt, and then after EVERY appt I wrote my own summary. I put a line across the page to mark where one appointment ended.  It was SO helpful to have that available at every appointment so I could quickly look things up. I did it bullet journal style with an index in the front, which was done as I made notes. So in the index, her cancer doc would have 2,3,5,10,12,16...to note the pages where the notes for that doc was. It made it simple to find stuff from one doc while keeping everything in chronological order. So in between a cancer doc visit and a chemo treatment she might have had a UTI. Or a new med added. Doing it in chronological order really helped us to keep things straight. 

I hope you won’t have to juggle so many docs soon. 

[Twigs]

I use pages like these (Avery Business Card Pages) and make sure I get a business card from each provider.

[J-rap]

 I kept a big notebook for my dd.  I also kept a calendar in there.  She was going through a long period where no one could diagnose her.  Keeping a calendar where I'd jot down any suspicious symptom from day to day was really helpful for both us and the doctors.

[happi duck]

What you're doing sounds great.  I would add what Annie G mentioned.

For my sister, I carried a notebook with me at all times with phone numbers and my own dated notes.  It was very helpful.

I also logged phone calls in the same journal.

[Katy]

I'd also add loose leaf paper.  You can put notes in sections for each provider, and notes for yourself about what questions to ask, as well as a symptom log (be sure to highlight time/dates of any evidence- like videos you keep on your phone) so you can quickly find them at doctors offices.

[PeterPan]

3 hours ago, Arctic Mama said:

And if you’re smart do what I didn’t - scan in all the paperwork and make a flow chart with date references for in virtually, so you can pull up, in order, all care and assorted documents and print them again if need be.

Ooo, this is brilliant! I hadn't thought to do it for medical, but if I had a complicated situation it would be wise. With my ds' IEP and the zillions of evals he's had, I have everything in a dropbox file, all organized by year and folders. That way when I bring in a new professional I just send them the link and everything is there, boom. They love it and have never pushed back, so I guess dropbox is kinda a normal way to share. And you can do it through your phone, etc., texting them a file or sending them a link to the whole thing.

[HollyDay]

Keep multiple copies at home...some office somewhere will lose everything (ask me how I know). 

Keep lab results together and take to every appointment

Keep pharmacy information on your cellphone and also hard copy.  Make sure you have more than one insurance approved pharmacy in case you need after hours or are forced to use mail order.

Ask for copies of test results and lab results BEFORE you leave the office.  In fact, ask them to copy the papers while you are in the office so you can hand carry (we only have 1 office that will not do that). 

Make sure you write down names also:  Ms A.  from Dr. B office faxed the information to Dr. C office on 00/00/00 day at 0:00 time. Then call Dr. C office:  Mr D at Dr. C office acknowledged receipt of fax (and note time). 

Keep hand written lab and pharmacy scripts even if it is sent electronically.  You don't know how many times I've gone to pharmacy and there is no record of the prescription and the doc office has already closed.  I've gone to the lab too and the information on the script is incomplete or inaccurate (didn't match what doc told me) so make sure you have a name and number so the info can be verified. 

[ktgrok]

51 minutes ago, Arctic Mama said:

It’s not difficult, per se, but it does require organization.  I just keep a binder with me at all times, for all appointments.  And a flash drive. Lots of things need photocopying or cc-ing to other offices to having them on hand is very helpful.  But there is no quick and dirty way around it - you have to know your information and have it on hand for the person who needs it.  Trusting office staff to fax it to one another hasn’t worked out well for me, so I’m the keeper of the paperwork.

 

I will sign records releases, but anything important I have on hand in my binder.  Before I leave I am getting a copy of the visit.  I am calling after a few days to get the doctor’s extended notes if it is critical.  All labs I have in hand.  None of this is left to office to office communication at this point.

 

DO keep a sheet in the very front of your binder with the contact information for each doctor’s office, including email and fax line.  And if you’re smart do what I didn’t - scan in all the paperwork and make a flow chart with date references for in virtually, so you can pull up, in order, all care and assorted documents and print them again if need be.  I have all the paper but NOT digital and catching up on that is my epic spring break project.  Once it is in place it makes life so much easier but getting it going when you’re pressured behind is endlessly time consuming.  However having to reconstruct all of that several times for various government agencies and grants was ALSO time consuming, so learn from my oversight, here.

Organization is NOT my strong point, but I'm trying. The only thing organized in my life is my dish towel drawer, lol. And homeschool stuff. I have been getting copies of lab work, but not doctor's notes. I need to do that ASAP. Some places have a patient portal with that info, but not all of them. And I have some of it saved digitally, but all over my computer. I need to create a folder for it all, preferably where I can access it remotely. 

45 minutes ago, Twigs said:

I use pages like these (Avery Business Card Pages) and make sure I get a business card from each provider.

That is genius!!! My husband may even have one of those I think. I'll ask. Never mind, he doesn't...I know that because all his business cards are in a giant pile. I'm ordering  it now. 

40 minutes ago, J-rap said:

 I kept a big notebook for my dd.  I also kept a calendar in there.  She was going through a long period where no one could diagnose her.  Keeping a calendar where I'd jot down any suspicious symptom from day to day was really helpful for both us and the doctors.

I've been keeping a running document in google docs, dated, with symptoms I notice, meds given, changes, etc. As well as a separate section for initial symptoms that prompted this process. I should also add a summary page of diagnoses/abnormal lab findings. Then I can print it out - the latest version, before any visits. I can also access it from my phone if need be, email it a provider, etc. 

[KungFuPanda]

The best experience we had with this scheduling madness was at Chikdren’s in DC. They put the family in a private room with a TV and some chairs/exam table. Then, each doctor would rotate through. DS could see 5-6 specialists on one clinic day. It was a long day, but it made life easier. 

We switched to Johns Hopkins, and we like it, but I do miss the convenience of one-stop shopping. 

[Crimson Wife]

To the extent that I can stay within the 2 major hospital systems in the area (UC San Francisco and Stanford), I do. Because both of those have gone electronic and I've signed release forms, all the doctors and other healthcare providers affiliated with one of them can view all of DD's records back several years. Unfortunately our general pediatrician has her own independent practice and uses paper so anything she does isn't in the electronic file. Ditto for DD's speech therapist and her occupational therapist. The ABA center has an electronic file but it's not accessible by anyone outside that organization.

I can definitely empathize with juggling multiple specialists. Within the past year DD has seen audiology, behavioral therapy, endocrinology, ENT, genetics, integrative neurodevelopmental pediatrics, neurology, occupational therapy, primary care pediatrics, and speech therapy. This spring we're planning to see a different geneticist at UCLA who does research on her neurological syndrome and I put in a request for an appointment with Dr. Frye in AZ as he's an expert in the role of immune dysfunction in autism. I don't know if he'll agree to see her but if he does, I'll take her to Phoenix.