Any Drs or parents of special needs kids, please chime in here.

[amo_mea_filiis.]

Our pediatrician has been out for 2 weeks, and prior to that, has not filled out papers we need.

 

I love our NY doc. She trusted me to know what the kids needed, and knew that i had a plan for our bandaid treatments, like the formulas for ds. She would also see ds on really, really bad days because we knew sonething was going on.

 

We have seen all docs in the biggest practice around here, and the one doc that was highly reccommended, refused to take ds on as a primary. We switched practices, but he was too far. Now we have a local doc, but she really does not know the kids, and has never seen ds on a bad day. She sees a little boy who can talk to her, has equal leg strength, and is currently perfect weight.

 

Ds needs bilateral hand splints to prevent any more loss in the web spacing. He needs some type of formula to get him through his current food refusal. He needs a new harness for his stroller. He needs his advair refilled. We need a few other things that if i were financially able, i could just go buy. I am not able, and ds's insurance covers everything.

 

Dr has the paperwork for all of these things, but does not understand why we need these things.

 

Do i need to sit and talk with her about my kids? Give her statements from his therapists? Show her videos of the bad times?

 

I dont know if the report accusing me of abuse made it to her hands, or if she truly does not understand how bad it can get with ds, but i cant stand having to only paint a negative picture of my kids.

 

What do i do?

[kroe1]

Sorry, I'm not one of the experts you mentioned, but I can tell you what I would do.

 

1. Make an appointment. If the doctor doesn't know your child, how can she fill out all of that paperwork?

 

2. I would fill out most of the paperwork for her. If you can make it as easy as possible, she is more likely to sign it during an office visit.

 

3. The video idea you had was great. Make sure you bring your own DVD player or youtube access. She won't have time to go get all that set up herself. Any other physician documentation is great, too. Bring her copies that are highlighted in the parts you need to be important.

 

4. Remember, your doctor has about 15 minutes for your son per visit no matter how complicated his needs are. Most of that time will be spent filling out her own paperwork required by your insurance company and state regulations. So keep each visit simple with only 1 problem at a time. You are more likely to get results that way. It may mean you schedule 2 visits in one week, or a weekly visit until everything is done you need. But it will be way faster to get it done that way than making 100 phone calls to an office and hoping it gets all done.

 

HTH

 

:grouphug:

[swellmomma]

I would have your old NY dr send the dr a file on your ds as well as phone her. Our ped was willing to do that if we found a local dr, and he does so when we go to see specialists because the kids issues do not present everytime and he has seen it all and knows there is more going on than the others drs can see in a 10 minute visit.

 

The few times tables were turned and my ped needed to do paper work(like for the kids disability funding) he had the other specialists all send him a report of their testing. Each on individually doesn't mean much but put together you get a bigger picture of the issues each kid was facing, and therefore he was able to fill the forms out without risk of being thought fraudulant.

 

Anyway, back to my first suggestion, have NY dr send new dr a letter outlining his/her findings and/or a copy of his charts that show what she witnessed as she would have documented it all, particularily those bad days.

[kalanamak]

Our pediatrician has been out for 2 weeks, and prior to that, has not filled out papers we need.

 

I love our NY doc. She trusted me to know what the kids needed, and knew that i had a plan for our bandaid treatments, like the formulas for ds. She would also see ds on really, really bad days because we knew sonething was going on.

 

We have seen all docs in the biggest practice around here, and the one doc that was highly reccommended, refused to take ds on as a primary. We switched practices, but he was too far. Now we have a local doc, but she really does not know the kids, and has never seen ds on a bad day. She sees a little boy who can talk to her, has equal leg strength, and is currently perfect weight.

 

Ds needs bilateral hand splints to prevent any more loss in the web spacing. He needs some type of formula to get him through his current food refusal. He needs a new harness for his stroller. He needs his advair refilled. We need a few other things that if i were financially able, i could just go buy. I am not able, and ds's insurance covers everything.

 

Dr has the paperwork for all of these things, but does not understand why we need these things.

 

Do i need to sit and talk with her about my kids? Give her statements from his therapists? Show her videos of the bad times?

 

I dont know if the report accusing me of abuse made it to her hands, or if she truly does not understand how bad it can get with ds, but i cant stand having to only paint a negative picture of my kids.

 

What do i do?

 

I would get statements from therapists as well as the old dr records sent as well as talk about the kids. I would only resort to vids if I felt nothing else worked and I didn't have any other options.

 

I am assuming your paperwork has to do with getting services or consumables paid for. Realize that a doc meets crooked and/or crazy people every week (maybe not every day). If a doc refers without a proper need, they can get into real trouble. A child can be used for Munchausen by proxy. S/he does need to understand the need before they can fill out something that is either funded, or has risks (like tests).

 

HTH.

[jelbe5]

Contact the doctor and talk to her and make arrangements for your previous doctor to also make contact. It will be up to you to educate the doctor about your situation and what you need.

 

Do you have to have a ped? I finally gave up on them. My son's PCP KNOWS her limitations and listens to me and makes referrals when needed.

[Night Elf]

I would make an appt. to talk with her. She may be uneducated about the things you're requesting. Perhaps if you talked with her, she would see that you are actually talking about real therapeutic things and not some overprotective mother who enjoys the attention a sick child brings. While I've never gone through what you have, I've had my fair share of doctors pat me on the head and treat me like a child.

 

I would also call the last good doctor and ask them to send files to the new doctor. Then during the appt. I would ask if the dr. had a chance to review them.

 

I'm sorry the drive to the other dr. is too far. :grouphug:

[Slipper]

Just a small suggestion here - when you call to make an appointment, let the person scheduling know that you need to talk to the doctor longer than a typical appointment. It may not be this way everywhere, but at my pediatrician's office, I can request an extended appointment which will give me extra time and alert my pediatrician that I am coming in with something I consider significant.

 

My other suggestion is to make a list (but it sounds like you already have). My pediatrician knows that when I come in, I have a list (big or small) of what I want to talk about. Usually he scans my list before we discuss any concerns he may have. (These are usually well child visits).

[LostSurprise]

If you like her or have no better alternatives, ask your past doctor to consult with her. Call past doctor(s) up and ask them to send over notes and make a phone call for you.

 

Then approach current doc and let her know you respect that she doesn't want to make decisions without more information, but you desperately need these things so if they can't meet with you and work it out you need to move on to someone who can. Ask what information she needs to make the decision (video, files, appointments, tests).

 

Does she have your son's medical file? Its odd that she doubts this stuff if she has his documentation. In ongoing medical problems its common to follow current treatment (diet, medication, therapy) until the doctor gets to know the patient well enough to make changes. Its unusual for a doctor to withhold treatment from a special needs child just because they haven't known them long enough. That's what the files are for.

 

It doesn't sound like the beginning of a beautiful relationship. I hope that changes, but if it were my son I would be looking for other options (if I had any). She doesn't sound like she understands treating patients with special needs.

[amo_mea_filiis.]

Thanks everyone.

 

Most things we need are because of financial. I could go buy the hand splints, but i cant afford the right ones. Same with formula.

 

She does have both kids prior records. But she also may have a psychologists report accusing me of munchausens. It was cleared by children and youth (cps) and multiple doctors. There was a complaint filed against the psych and he is not allowed near my kids cases.

 

I will start with a letter or call from his occupational therapist. Part of his therapy is frustrating him and helping him work through it.

 

I will also give her copies of appt letters from the feeding clinic so she doesnt think formulas are the solution.

[kalanamak]

 

She does have both kids prior records. But she also may have a psychologists report accusing me of munchausens. It was cleared by children and youth (cps) and multiple doctors. There was a complaint filed against the psych and he is not allowed near my kids cases.

 

 

 

Well, you have the psychologist part a little bit on your side. Some of the biggest nut jobs I have met are psychologists, and I'm sure I'm not the only doc who thinks so. While there are wonderful, talented, smart, sensible people in the field, there are a few who go into the field to heal something deep in themselves, and it doesn't always work.

 

Best of luck. I encourage you to be firm but polite; an iron fist in a velvet glove.