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HELP! IVIG for PANDAS $$$$

confused about IVIG costs

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30 replies to this topic

#1 qannie47

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Posted 19 May 2013 - 10:20 PM

Please Help.   We are working with Dr. K and just recently found out that IVIG may not be covered.  I was quoted $15,000 for the first day and $12,000 for the second day from the center that it will be performed.  My son is only 7 and he only weighs 50 lbs.  I have searched all over the internet, including this forum, and it appears that NOBODY  has been asked to pay this high of an amount. Something seems amiss...If anybody could shed some light as to why we are being quoted such high fees?  The center is currently out of network for bluecross and if we have to absorb that 30% it will be crushing...particularly if the first treatment does not work.....HELP qannie47


Born 12/2005  Age 3, Scarlet fever>no fever, throat pain, only headache/neck pain/rash.  Chronic idiopathic joint pain in knee started after Scarlet fever (never made the connection).  + RLS.  4/2012 > 1st overnight onset of Panda symptoms  after first round of abx>diag possible sydenhams Chorea after 2nd post strep test>6wks (3 rounds of abx)  to clear strep>then 100% remission after neg strep test. (3 year joint pain/RLS went away & has never returned)  >diagnosed Pandas Dr. K 6/2012>100% symptom free for 3 months.   10/2012 lost tooth/strep exposure? Overnight appearance of symptoms, mild compared to 1st episode, rate it a 6 on severity scale>abx 2 weeks>100% remission for 2 1/2 months. 1/2013 Pandas overnight onset of symptoms again>no strep but Tonsillitis for 6 weeks>6wks of abx>cleared then went into 2 week stomach flu (not symptomatic with flu)>ER for dehydration> recovered>immediate relapse of Panda symptoms>rate episode 6>20 days of abx w/only 70% improvement. 6/2013 IVIG>within days 100% remission>aprox 12 weeks symptom free. 9/2013 Strep/stomach flu exposure>3 days later, 6pm sudden relapse of symptoms explosion, rate it 10 severity> 3 week episode>new symptoms include high rage, rapid cycling> abx full strength 500 2x day>day 9 some diminishing of symptoms for last 2 1/2 days.>10/16/2013 fingers crossed  MRI/EEG/aso/anti dnase B all normal. waiting for lp results:11/2013 LP REVEALED 2 WELL DEFINED O BANDS: INDICATIVE OF AUTOIMMUNE DISORDER


#2 chemar

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Posted 20 May 2013 - 08:47 AM

bumping up for answers from other members. Sorry your post was delayed in showing.


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#3 searching_for_help

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Posted 20 May 2013 - 09:00 AM

We used Dr. K in Chicago (I think there are 2 Dr. K's, which is getting confusing...)

Our daughter had IVIG done last November, 2 days, total of 85 grams, app. 110 pounds.

We paid a total of $12,600 for the IVIG, but that didn't cover the doctor fees.

If we are talking the same Dr. K, the amount they quoted you doesn't sound right.

We have Blue Cross, and they wouldn't cover it either.



#4 t_anna

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Posted 20 May 2013 - 09:49 AM

We paid Walgreens infusion $10,738.00 for HD over two days and that included the nurse (we did it at home). Also wasn't covered, Walgreens is still fighting it on our behalf though (doubtful we'll get anywhere). We have Oxford/United Healthcare.

 

T.Anna



#5 LLM

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Posted 20 May 2013 - 10:11 AM

First, you may want to contact the NIMH to see if you're eligible for IVIG thru their study. That would be free.

 

If not, and you are faced with paying a crushing amount for IVIG, I want to let you know that IVIG is not the only path toward remission nor is it any sort of cure. I am not at all bashing the treatment. It has helped a lot of kids. But there are also kids who aren't helped by it or aren't helped permanently by it. I say this only because when I was facing the decision of whether to pursue IVIG, I felt like I "had" to try it or I wouldn't be giving my child every chance he deserved. I was plagued by guilt and vowed to pay for it however we needed to. We did end up doing one HD IVIG (my son was 7 at the time). Because my son had undiagnosed lyme at the time, it resulted in a horrible herx response and put the whole family thru a whole lot of he**. It ended up doing nothing to improve his health or mental state and did not make him less reactive to subsequent bacterial infections. The only good that came of it was that it helped us discover the lyme.

 

This would hopefully not be the case for your son. But I chime in because we've been able to get my son healthy with long term antibiotics, treating an underlying zinc/B6 deficiency and supporting his health with specific supplements that address genetic issues. Tho my son is still susceptible to flares if he gets an infection, he is back to baseline for most of the time. I know many other families who've also been able to regain health for the long term without IVIG. Again. not bashing the procedure. But for those who can't get it covered and can't go broke paying out of pocket, you don't have to feel like you're denying your child his only chance to get well. You can get there without IVIG.

 

Dr K has helped many. He has helped the whole community with his willingness to treat our kids. But he tends to not look at other treatment options and/or other infectious triggers. While you may want to look at other, less expensive IVIG options, such as home infusion, just know it isn't your only path should that not pan out. Know that you can get your child well even if IVIG isn't an option for you.


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#6 t_anna

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Posted 20 May 2013 - 10:21 AM

I would have to agree with LLM. We did two HD IVIGs with DS 15 (in February and March) and although we saw some improvement it was not the reset button we are still searching for : (

 

T.Anna

DS15



#7 mdmom

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Posted 20 May 2013 - 10:27 AM

I agree with being conservative with IVIG.  We have been treating infections and underlying detox and gut issues for  2.5 years now (and quite aggressively with IV meds for the last 16 months) and my 15 yr old son has made slow, steady progress.  We added HD-IVIG treatments in Jan. and he continues to make slow, steady progress.  It's not a magic bullet.

 

I would urge you to find a doc that is willing to do thorough testing and look at clinical symptoms for infections (including Lyme, co-infections, etc) before you spend a lot of money on IVIG.

 

IVIG will not have long-lasting effects if there are underlying infections.


Edited by mdmom, 20 May 2013 - 10:29 AM.

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DS16 dx with PANDAS/Lyme & Co. at age 13 symptomatic since age 2; originally dx with Asperger's, OCD, Anxiety, PTSD
DD14 dx with Lyme, Babesia, Bartonella at age 11, symptomatic from birth

Mom & Dad with various symptoms for 20 years; both M & D being treated for Lyme & Co.

Also addressing MTHFR, diet (GF/CF/GMO-free or Organic),


#8 dcmom

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Posted 20 May 2013 - 11:15 AM

I agree with LLM re IVIG, although we have two different experiences.  I have two daughters with fairly classic pandas presentations, and good response to treatment.  They are doing very, very well, and have not had ivig.  As most of the above told you, IVIG is not a cure, but a cure for the current exacerbation- so if IVIG is not covered for you, what happens if the best case scenario happens, and this ivig works, but then down the line your child has another exacerbation?  I am not against IVIG at all, but if it is not a sustainable "treatment" for your child, you might want to explore other options first.  It is also not guaranteed to work.

 

We have taken ordinary measures to look for infection, and not found any.  Most of our docs agree my kids seem to have an autoimmune presentation.  The do well (95 to 100%) until an exacerbation is triggered, often times by illness.  This happens one to three times per year.  We have found in most cases steroids have helped to turn things around and get them to eventual remission.  In extreme situations we have even used IV solumedrol (high dose).

 

Just another option to look into.



#9 qannie47

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Posted 20 May 2013 - 12:09 PM

  • Thank you for your responses...I see that perhaps IVIG is not the cure all that I have been lead to believe...I am now confused as to why Dr. K was not more specific about what I should expect regarding lasting results of IVIG.  I double check his website to make sure that I understood correctly, and it does in fact tout "long lasting, and complete recovery' from IVIG.  I just sent him an email. Also, I have not had my child tested for Lyme....I never even heard of the correlation...I am going to ask our pediatrician to run the test. I am surprised that Dr. K did not order this test.  qannie47

Born 12/2005  Age 3, Scarlet fever>no fever, throat pain, only headache/neck pain/rash.  Chronic idiopathic joint pain in knee started after Scarlet fever (never made the connection).  + RLS.  4/2012 > 1st overnight onset of Panda symptoms  after first round of abx>diag possible sydenhams Chorea after 2nd post strep test>6wks (3 rounds of abx)  to clear strep>then 100% remission after neg strep test. (3 year joint pain/RLS went away & has never returned)  >diagnosed Pandas Dr. K 6/2012>100% symptom free for 3 months.   10/2012 lost tooth/strep exposure? Overnight appearance of symptoms, mild compared to 1st episode, rate it a 6 on severity scale>abx 2 weeks>100% remission for 2 1/2 months. 1/2013 Pandas overnight onset of symptoms again>no strep but Tonsillitis for 6 weeks>6wks of abx>cleared then went into 2 week stomach flu (not symptomatic with flu)>ER for dehydration> recovered>immediate relapse of Panda symptoms>rate episode 6>20 days of abx w/only 70% improvement. 6/2013 IVIG>within days 100% remission>aprox 12 weeks symptom free. 9/2013 Strep/stomach flu exposure>3 days later, 6pm sudden relapse of symptoms explosion, rate it 10 severity> 3 week episode>new symptoms include high rage, rapid cycling> abx full strength 500 2x day>day 9 some diminishing of symptoms for last 2 1/2 days.>10/16/2013 fingers crossed  MRI/EEG/aso/anti dnase B all normal. waiting for lp results:11/2013 LP REVEALED 2 WELL DEFINED O BANDS: INDICATIVE OF AUTOIMMUNE DISORDER

#10 joybop

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Posted 20 May 2013 - 12:43 PM

You should also be aware that hospitals set their own rates. The smaller community hospitals fees are often higher than large urban areas. They set their own fees and then negotiate fees with insurance companies. Insurance cos get a discounted rate but often uncovered services are left in full to the patient. I hate to say it, but you do have to shop around. Does this Dr. Have any affiliation with other hospitals to compare price? You could also ask to negotiate a better price and a payment schedule. You should also appeal the decision and ask your insurance company to cover it. I have often gotten things paid for that were initially uncovered or our if network.
While it is true that IVIG is not guaranteed it is an option. While you are waiting to make that decision I would be leaving no stone unturned to make it as affordable as possible or better yet...covered.

#11 LLM

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Posted 20 May 2013 - 03:35 PM

  • Thank you for your responses...I see that perhaps IVIG is not the cure all that I have been lead to believe...I am now confused as to why Dr. K was not more specific about what I should expect regarding lasting results of IVIG.  I double check his website to make sure that I understood correctly, and it does in fact tout "long lasting, and complete recovery' from IVIG.  I just sent him an email. Also, I have not had my child tested for Lyme....I never even heard of the correlation...I am going to ask our pediatrician to run the test. I am surprised that Dr. K did not order this test.  qannie47

Dr K, like many doctors, treats based on what he sees as "true". If most of his patients do IVIG and get well and never come back, his truth is that IVIG cures them. What he doesn't see is when IVIG doesn't do the trick and those patients move on to other doctors, other diagnoses.

From what I understand, he does not feel Lyme is a problem and even if he did test, he'd most likely order a standard Western Blot, which is not reliable. If you feel lyme is something to consider, then doing an Igenex test and/or consulting with an LLMD (lyme literate doctor) would be a better avenue. Mycoplasma is another common infection our kids struggle with.

 

Being new to this forum, I'd browse through the helpful threads pinned at the top of the forum page and then browse through older posts, searching on terms like IVIG, mycoplasma, lyme testing, PANS, co-infections... and get a feel for things beyond strep. As others have said, knowing/treating the underlying infection is key to whether IVIG will be effective in the long run. It's worth researching and testing before dropping $$$$


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#12 nicklemama

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Posted 20 May 2013 - 03:44 PM

That quote is what they will bill your insurance. If you pay upfront, they will give you an uninsured price. If insurance pays, you may get some refund. We've done IVIG with Dr K twice. Ask them what the charge will be for paying up front. It's based on weight. I'm guessing it should be in the $6k range plus Dr K's fee.
DS10, dx 2010 PANDAS, 1.5yrs after first symptoms
IVIG #1- May 2011, IVIG #2- Nov 2012
Ehrlichia, anaplasma dx Mar 2013
Lyme dx 2014

#13 SSS

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Posted 20 May 2013 - 05:11 PM

I didn't read all the replies, but we had to pay cash for 2 high dose IVIG's when my dd was 6-

We went through Coram Healthcare Centers (chain of infusion centers across the US)
Our prescribing Dr. oversaw the directions (prescription) by telephone- directly- pharmacist at the center.

Coram Dr. and nurses do these all day- totally set up - extremely kid friendly, AND, 20 minutes from our house so my dd could sleep in her own bed and not have to travel.

Total cost for both IVIG's (high dose, administered over 2 days, with steroid, Benedryl, nursing staff, etc.)

About $8,000. I think she weighed 42-45 pounds at the time.

Our treating PANS Dr. was a DAN! Dr. who did not have an infusion center, but has a caseload of PANS patients.
I do not believe Dr. K from Chicago will write the script for you to get IVIG from another area.

We still had to pay our treating PAN Dr.s hourly fee's on top, of course.
Daughter 9, PANS, probable congenital Lyme,
started biomedical treatments w/DAN! and GF/CF at age 4
Cam K 175, 2 HD IVIG's, 2 LLMD's- improved, but still challenging in areas at times.
Mom-tested positive Igenex PCR Lyme, and positive Bartonella 2011.
Went through extensive Lyme/Bart treatment, lasting improvements.
Mom still working on gut health, and
6/14 daughter heading back to LLMD for more help after a long break.

#14 searching_for_help

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Posted 20 May 2013 - 06:08 PM

I agree with some of the statements above. Dr. K has had good success with some, but our daughter has not benefited from IVIG. He has done some more bloodwork, but I've been disappointed that he doesn't seem to look for the many, many things that seem to trigger our kids.



#15 peglem

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Posted 20 May 2013 - 08:34 PM

Just recently someone locally here in Phoenix said that Dr.K(chicago) put their IVIG on hold a few days while he had a meeting with insurance company (ies?).  He then told them they would have to sign a waiver, promising not to try to recoup cost from insurance (not allowed to submit a claim for payment?).  That's all I know- don't know if it was one specific insurance company or if this is new policy for all IVIG through him.


-Peggy, mom to 19yo PANDAS daughter w/ onset probably in infancy. Manifests w/ severe autism symptoms and currently nonverbal.





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