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In MD and frustrated!


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So I have been trying to find a neurologist to get started on a treatment plan.

 

Just got an appt. with Dr. Latimer and found out she doesn't take insurance so I started to call around. Turns out most of the Dr.'s that are PANDAS educated in our surrounding area do not take insurance and range anywhere from $500-$1500 to get in the door.

 

Now I am willing to do anything for my son but we have amazing insurance! Is this standard for everyone? Has anyone had any luck with Childrens or Hopkins? I have been trying to get them to call me back for a couple months now. :angry:

 

 

Any advice is appreciated.

 

CB

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Dr L doesn't take insurance but does give you the insurance form you need to submit your own claim. We were then reimbursed a portion of our expenses.

 

For example, if a doctor's charge is $400, our insurance co. may tell us that its usual and customary charge is $300. If we've met our annual deductible, they'll reimburse us 80% of the $300, or $240. So we end up paying $160 out of pocket, not $400. But you do have to pay the entire fee up front and get reimbursed from your insurance co.

 

Still, when considering the cost of many of the doctors who don't take insurance (which includes some Pandas and most lyme docs), you should call your insurance co. and ask if a visit to that doctor would be covered. It's often possible that you only end up paying a portion out of pocket.

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We lived in DC for three years. I found that many/ most of the desirable pediatric physicians (including ped primary care) inside the beltway did not accept any insurance.

 

We have found Dr L to be well worth the cost. I did not have luck at Children's, and I would steer clear of anyone educated at, or associated with Hopkins. It is possible to waste a lot of time and money searching for help with this disorder, if financially possible , i would see Dr L, may save you $$ in the end.

Edited by dcmom
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So I have been trying to find a neurologist to get started on a treatment plan.

 

Just got an appt. with Dr. Latimer and found out she doesn't take insurance so I started to call around. Turns out most of the Dr.'s that are PANDAS educated in our surrounding area do not take insurance and range anywhere from $500-$1500 to get in the door.

 

Now I am willing to do anything for my son but we have amazing insurance! Is this standard for everyone? Has anyone had any luck with Childrens or Hopkins? I have been trying to get them to call me back for a couple months now. :angry:

 

 

Any advice is appreciated.

 

CB

 

 

Concur with others; Hopkins and Children's kept us down a dead end path for a long time as neither considered my son's neurological and behavioral symptoms part of the same. We wasted over three years trying to convince one and then the next that they were related......

 

We also have not found a single doctor worth seeing who "accepts" insurance. Dr. L.'s office files for us but does not accept it in the traditional sense. We have PPO/non-PPO options and often must be satisfied to get 30% back.

 

bill

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We got reimbursed for Dr.Latimer's visit at in network rate- so we were only left with the $35.00 copay. But, we had a referral from our local rheumy who said he did not have the expertise to treat, so we got a pre-auth before the appointment. However, traveling from Arizona to see her cost us well over $5000.

 

It does seem a shame to pay premiums for insurance (not a small sum at all) only to have to pay out of pocket if you want effective treatment.

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Just wanted to ditto what everyone else said- Hopkins was not really worth the $ (their psychiatry service did not take my WONDERFUL insurance!) and we paid $700 for their eval! YIKES

I think some individual docs there may beleive in PANDAS or PITANDS or something along those lines-- but as an "offical" stance- nope- do not waste your $ time or child's effort there

 

I have heard the same about children's

 

Please- take the $ and go to Dr L- one daughter just had pex & we are so happy with her. You can PM me if you want more info

 

Also- docs who are willing to "think out of the box" are not likely to be jumping through insurance hoops. Just my $.02

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One more ditto. I agree that you may end up saving money in the long wrong. I know it seems like a lot of money...and it is... BUT dr L is not a typical dr. Especially compared to those that take insurance. You will be amazed at the amount of time she spends with each patient. (which means be prepared to wait a loooong time in the waiting room but sooo worth it)

 

However, it's not just the money. I honestly could not handle 1 more in-network dr dismissing my concerns and acting as if my husband and I needed parenting skills. I'm not as strong as some on this forum. Even though I knew deep down my child was sick and it was not parenting skills you can only hear it so many times before you start to wonder if you are crazy. After seeing dr L and being treated with compassion and respect I realized paying out if pocket was worth it. Then when I started seeing healing after starting treatment with Dr L it reaffirmed our decision again.

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We really like Dr Shafrir in Baltimore and he was referred through our insurance (Kaiser P) and they don't reimburse anything. Dr S doesn't have a lot of PANDAS experience which he said right from the start but he is wonderful! We didn't even know about PANDAS before him and having a Dx was huge for us. I wanted a specialist opinion and we went o see Dr L this Fall and paid a whole lot of out-of-pocket money and I was not impressed (sorry Dr L followers). We waited 3 hours for our first visit. She never returned an email and phone call. And, the second time we went it was like she didn't even remember who we were. Maybe okay if insurance paid for it but not for what we paid! Dr S on the other hand personally called me on the phone more than once and had genuine concern for my DD. The good news is that Dr L said she would work with Dr S so our insurance could pay for it which I thought was very nice. I would definitely recommend Dr Shafrir.

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