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Questions about Dr. K and IVIG


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Hi, Well our beloved pediatrician finally dropped us last week. She said she doesn't feel comfortable experimenting with treatments any more. I am in Ohio and have not been

able to find anyone else, except a very expensive D.O. who doesn't take insurance, so it would cost $700 just for her to see my 2 children for a first appt. and she doesn't do IVIG either.

So before I spend $700 for a consultation and then Lord knows how much for regular appointments, I'm thinking my money might be better spent just going to Chicago to get IVIG. I know my son, who just turned 12, should be a good candidate - when he was on steroids for a month two different times, he was an entirely different person. It was like living with a Stepford child - it was amazing. He begs me every day for IVIG b/c he wants to feel the way he felt on steroids. Both of my kids are currently on Zithromax prophylactically (Daughter 250 mg. per day, son 500 mg. per day).

 

So here are my questions:

How much does Dr. K charge for an initial consult?

If he wants to do IVIG, does he do it during the same visit or would we have to travel to Chicago twice?

How much does the IVIG cost?

Does he submit to insurance?

How long would we need to be in Chicago all together so I can figure out hotel and food expenses?

 

Thank you so much!

(p.s. I am ColleenRN's sister)

 

-Dawn

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How much does Dr. K charge for an initial consult?

 

$500 but he is in Europe for the next two weeks so consultation wouldn't be until late June.

 

If he wants to do IVIG, does he do it during the same visit or would we have to travel to Chicago twice?

 

After consultation, sometimes he requests steroid burst or additional labs (sounds like you already know steroids helped)..... BUT, you would not need to go to Chicago twice. He does a pre-IVIG appointment the day prior to treatment followed by two days of treatment.

 

How much does the IVIG cost?

 

Approximately, $1,000 per 10 pounds of child for medication, surgery center $1,800, Dr. K $2,400

 

Does he submit to insurance?

 

You pay up front and then its submitted to insurance and you are reimbursed.

 

How long would we need to be in Chicago all together so I can figure out hotel and food expenses?

 

3 to 4 days... Only 3 days is required if you are willing to travel the same day as final treatment. You can find hotels for as inexpensive as $65.00 a night and walking distance to surgery center.

Edited by SF Mom
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Thank you SFMom for the info.

I am in SHOCK!

So for a 90 pound child, I am looking at $13,200, right?

How in the world do people come up with this kind of money? I would struggle to find the $500 for the initial consult.

 

I just don't know what I'm going to do.

 

Do they take payment plans or do you need all the money up front?

 

Thanks,Dawn

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Thank you SFMom for the info.

I am in SHOCK!

So for a 90 pound child, I am looking at $13,200, right?

How in the world do people come up with this kind of money? I would struggle to find the $500 for the initial consult.

 

I just don't know what I'm going to do.

 

Do they take payment plans or do you need all the money up front?

 

Thanks,Dawn

It is hard to figure it out. We are probably heading for IVIG #2 this summer. We have saved over the year and half in case we needed to. My son weighs over 100 lbs. The first time we withdrew from our retirement fund. Our insurance denied reimbursement. We dont expect them to help out this time either. Ughhh!!!!

Edited by bmom
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Hi, Well our beloved pediatrician finally dropped us last week. She said she doesn't feel comfortable experimenting with treatments any more. I am in Ohio and have not been

able to find anyone else, except a very expensive D.O. who doesn't take insurance, so it would cost $700 just for her to see my 2 children for a first appt. and she doesn't do IVIG either.

So before I spend $700 for a consultation and then Lord knows how much for regular appointments, I'm thinking my money might be better spent just going to Chicago to get IVIG. I know my son, who just turned 12, should be a good candidate - when he was on steroids for a month two different times, he was an entirely different person. It was like living with a Stepford child - it was amazing. He begs me every day for IVIG b/c he wants to feel the way he felt on steroids. Both of my kids are currently on Zithromax prophylactically (Daughter 250 mg. per day, son 500 mg. per day).

 

So here are my questions:

How much does Dr. K charge for an initial consult?

If he wants to do IVIG, does he do it during the same visit or would we have to travel to Chicago twice?

How much does the IVIG cost?

Does he submit to insurance?

How long would we need to be in Chicago all together so I can figure out hotel and food expenses?

 

Thank you so much!

(p.s. I am ColleenRN's sister)

 

-Dawn

 

 

Dawn

We did a phone consultation. We are in NC so it worked out better then traveling. He did want to see certain test done before he talked with us. Our local doc did the blood work and i mailed the results to DR K along with a check for $500.00 We talked on the phone for about 30 min.. He did recommend IVIG for my son but i am trying to get my local dr to help with this. We are lucky that she is willing to administer the meds she just needs to find a supplier.

Robin

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i have a consult set up too (by phone).

what can you do if only the consult is what you can manage?

i guess, i might end up with a great diagnosis and treatment plan, but not enough funds to do it.

i am so dissapointed to read all this.

have any ins. companies reimbursed for ivig?

 

why are there so many road blocks with pandas?

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Don't give up hope. Once you consult with Dr. K, he is happy to consult with your local Dr. and make recommendations even if that includes IVIG. Our insurance did reimburse, finally! But of course the reimbursement does not include travel and deduct. I also understand Dr. B has been able to get IVIG treatments covered and does not expect payment up front but might require two visits to CT.

 

Tests Dr. K wants us to do for my twins in advance of 'another' phone consult we have scheduled in late June: CBC, ASO, Anti-DNase-B and circulating immune complexes.

 

Dawn: I am fairly certain your math is about right. Our son is 47 pounds and it was approximately $10,000 per treatment. I also know of several individuals doubling up on phone consults to save on cost.

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I agree, Dr. K is the best, but it is expensive. And even if you can find a way to afford it, you still would benefit greatly from having a local doctor you can work with. Here are two names - they are from various lists of PANDAS docs that are out there, so I don't know anything first-hand. Not sure if they are anywhere near you either. Also, maybe try starting a thread asking for recommendations from other Ohio parents. If you put it in the title of the post, all the Ohio folks will take a look and help you if they can.

 

Michelle McMillan, M.D.

Akron Children's Hospital Pediatrics

Solon, OH 44139

440-349-0067

 

Dr. Nevada Reed, MD (neurologist)

8054 Darrow Road

Building D, Suite 5 & 6

Twinsburg, OH 44087

phone: 330-963-8600

fax: 330-963-8680

http://www.kidslinkohio.com/family/reed.shtml

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Here's one more name that was on this forum's list, just in case you hadn't seen it:

 

Glenn J. Trippe, M.D., F.A.A.P.

"very interested in learning and treating this.. ....used longterm antibiotic without me even mentioning it.. He is the one who introduced me to PANDAS and told me what it was.. and who is treating my DD at this time."

New Beginnings Pediatrics

Norwalk, Ohio

http://nbpeds.com/glenn-trippe

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Thank you so much for the referrals - I will look into them.

And Ill start another post too.

Thanks! -Dawn[

 

 

 

quote name=mama2alex' date='Jun 1 2010, 05:21 PM' post='69732]

Here's one more name that was on this forum's list, just in case you hadn't seen it:

 

Glenn J. Trippe, M.D., F.A.A.P.

"very interested in learning and treating this.. ....used longterm antibiotic without me even mentioning it.. He is the one who introduced me to PANDAS and told me what it was.. and who is treating my DD at this time."

New Beginnings Pediatrics

Norwalk, Ohio

http://nbpeds.com/glenn-trippe

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