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mightmom13
member
Health team leader?
mightmom13
member
For those of you either dealing with mulitple health issues or finding out about multiple issues - do you have somone who is kind of a lead/head person in your medical "team?"
My daughter has a lack-luster pediatrician, developmental pediatrician who wants follow ups, a genetics MD following/testing, just got a referral for a pediatric GI, reommended EEG which could lead to a neuro consult - hopefully not, a hearing test recommendation that could be done through EI, speech, feeding, PT, with OT eval with our EI program....it all seems like a lot of people who are not talking to eachother except for her EI therapists.
This is all a lot and I feel like there should be someone helping coordinate everything and everyone. I have an EI care coordinator but that is just for her developmental goals while she is in EI. Am I wrong in thinking this and it is my job to lead or does anyone here have a specific go-to doc?
Thanks - just keep getting handed referral after referral.
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Re: Health team leader?
Ultimately I feel it is my job to keep all members (ie: various doctor specialities) in the loop regarding my son - granted I don't think most of them technically need info from each other but if I feel they do then I am the one to tell them. I do give all info to DS2's doctor though since that is where his main "file" is kept.
In regards to getting referrals and making doctor appointments (standard/sick type care), I have a clinical nurse case manager that I call. She inputs all referrals I need, will answer some general questions, direct me to the specific department (referral management typically) if needed, etc. Even with her though, I keep track of when referrals expire and let her know when (like today!) I need a new one submitted to insurance.
I'm part of a military family. Mentioning that in case it makes a difference somehow.
I am the coordinator.
Get yourself a three ring binder and get organized according to specialty. I keep EI stuff and assessments in a seperate binder and only bring the most recent educational assesssments to the doctor appointments who would be interested.
It sucks, but you are the one most invested in the outcome, therefore you are in charge. If your DH is organized it may be a good idea to put him in charge of the binder. If you are the one doing all the appointments though, you may want to be in charge of the binder since you will need to find the info quickly.
Google 'medical health record keeping for children' or 'health care binder'. Dr Savard has a system and you can find most of her forms online through other sources.
Thanks - I did see awhile ago that post about having a binder with all your kid's health stuff in it and thought it was a good idea - I have things partially organized; just have to get it all together. Luckily I can be organized - it's just finding the time.
I have a XH instead of a DH so it is all me and thank you yes it does suck....but you do what you gotta do to make your kids be and feel their best. I will have to look that up on google too to see what best suits our needs at the moment. None of our healthcare providers talk to eachother even though they are in the same network so it is a little frustrating to go over everything, everytime, every 2-3 weeks.
Thanks for the vent.
I have all my son's records in binders, too, and lists if medications, appointments, etc. He sees about 11 different medical specialties yearly. BUT, you should have a medical professional to oversee total care, to make sure whether there are any new tests or procedures your child may need. If you cannot get a better pediatrician, I suggest you talk to the geneticist about how to make sure nothing is overlooked.
I am the coordinator.
All of DS's evaluations and IEP's are in our important documents box. All of that is in there with other important documents like birth certificates, etc.
The best way is to get a planner where you can coordinate all your appointments. I have one in my purse. I also use two calendars: one is at work and one at home.
I'm another one with binders. I also scan all it all and upload the important stuff to google docs. That way when say his OT wants the copy if his recent IEP I can just email it. Or when his school team could really use the report from his most recent Dev ped follow up. Two seconds of my time and it's in their inboxes. I coordinate and/ or facilitate communication when it's necessary. I do pick professionals I can trust but I'm the one with the vested interest.
DS 09/2008