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bubbasmom

WHO GIVES THE IVIG TREATMENT?

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Okay so while my family FALLS APART over this PANDAS I can't get any help. I know I'm impatient but I needed a cure YESTERDAY!! I hear so many good things about IVIG but nobody can tell me who to go to how to get the treatment how much it cost does insurance cover it. It's extremely frustrating. I feel like the whole world is playing 'I've got a secret' around me! Please can anyone give me SPECIFICS about what kind of doctor does the treatment, does United Health Care cover it has anyone found out, how much does it costs???? My pediatrician is being very sympathetic, and he says 'he's waiting for phone calls' well COME ON. Since there's not a destinct start and stop time - there is but no body can predict WHEN that will be - I feel like a ticking time bomb! My son has RAGE, I MEAN RRRAAAAAGGGGEEE with this.

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You can call Dr. Kovacevic in Chicago on Monday.

 

A phone consultation is $350.00, IVIG is $1,000 per 10 pounds of child, surgery center is about $1,800 for 2 days, Dr. K's time for 2 days is $2,400. We flew from CA to Chicago on Frequent Flyer Miles, Hotel was $65.00 per night, rental car was around $400.00 for 4 days. Overall, approximately $8,000 to $10,000. We will see if we get anything out of our insurance company. The good news is you could probably be scheduled within 2 to 3 weeks and on your way to doing better.

 

Sorry, don't know much about Dr. Latimer's cost but she is in DC area and does both IVIG and PEX.

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Okay so while my family FALLS APART over this PANDAS I can't get any help. I know I'm impatient but I needed a cure YESTERDAY!! I hear so many good things about IVIG but nobody can tell me who to go to how to get the treatment how much it cost does insurance cover it. It's extremely frustrating. I feel like the whole world is playing 'I've got a secret' around me! Please can anyone give me SPECIFICS about what kind of doctor does the treatment, does United Health Care cover it has anyone found out, how much does it costs???? My pediatrician is being very sympathetic, and he says 'he's waiting for phone calls' well COME ON. Since there's not a destinct start and stop time - there is but no body can predict WHEN that will be - I feel like a ticking time bomb! My son has RAGE, I MEAN RRRAAAAAGGGGEEE with this.

 

I was stuck in exactly that mode for years....my pediatrician is very sympathetic as well, but he could not get the support and cooperation of specialists to confirm anything to get insurance coverage. My daughter's primary insurance is UHC and I've looked into their criteria for approving IVIG- you need to have lab work that shows immune deficiency + at least one bacterial infection attributed to that deficiency. Here's what has recently happened for us (thank you, God):

 

I got the Cunningham bloodwork done which showed high CamKII levels and high levels of one of the anti-neuronal antibodies. I sent the results to the pediatrician and urged him to call Dr. Cunningham with any questions. He did call her. She explained the significance of my daughter's results and gave him Latimer's name and # for questions about treatment. So he called Dr. Latimer and she explained how we might get IVIG covered by insurance. So bloodwork for immune deficiency was done...and that has shown deficiency, so now her pediatrician feels that he has a case to take to the immunologist to have IVIG done...and that's where we are right now. IF the pediatrician can get the cooperation of the immunologist, we will be on our way to IVIG soon...If not, I'm going to be one very angry, very bitter parent! We've been to the immunologist in the past and he wasn't terribly helpful....but this new evidence should help.

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You can call Dr. Kovacevic in Chicago on Monday.

 

I guess as opposed to the question of WHO literally, I mean what KIND OF DOCTOR/TECH/FACILITY!!!

 

 

A phone consultation is $325.00, IVIG is $1,000 per 10 pounds of child, surgery center is about $1,800 for 2 days, Dr. K's time for 2 days is $2,400. We flew from CA to Chicago on Frequent Flyer Miles, Hotel was $65.00 per night, rental car was around $400.00 for 4 days. Overall, approximately $8,000 to $10,000. We will see if we get anything out of our insurance company. The good news is you could probably be scheduled within 2 to 3 weeks and on your way to doing better.

 

Sorry, don't know much about Dr. Latimer's cost but she is in DC area and does both IVIG and PEX.

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I think what kind of doctor varies a bit- for sure immunologists, rheumatologists and possibly internal disease specialists. Everybody here seems to have a unique experience with this- I'm not sure what kind of Docs Kovacevic and Latimer are. We seem to all go with doctors who are willing to do IVIG more than a particular type of doctor...

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Okay so while my family FALLS APART over this PANDAS I can't get any help. I know I'm impatient but I needed a cure YESTERDAY!! I hear so many good things about IVIG but nobody can tell me who to go to how to get the treatment how much it cost does insurance cover it. It's extremely frustrating. I feel like the whole world is playing 'I've got a secret' around me! Please can anyone give me SPECIFICS about what kind of doctor does the treatment, does United Health Care cover it has anyone found out, how much does it costs???? My pediatrician is being very sympathetic, and he says 'he's waiting for phone calls' well COME ON. Since there's not a destinct start and stop time - there is but no body can predict WHEN that will be - I feel like a ticking time bomb! My son has RAGE, I MEAN RRRAAAAAGGGGEEE with this.

 

I believe IVIG is TYPICALLY done by Immunologists but that does not mean others physician's can not write the orders. Our dd receives her IVIG at her allergy doctor's office. Many of the illnesses "approved" for IVIG are either autoimmune illnesses or primary immune illnesses. Many hospitals also have an in house infusion center where IVIG is completed.

 

I would start with having the Cunningham blood word completed and then have your Ped run a complete Immunological Panel as well. The immuno panel should include blood work for IgG, IgG subclasses, IgM, IgA and the Pneumococcal, Diptheria & Tetanus Titers. Many of these kids are failing some portion of the Immunological panel which may mean a diagnose of a Primary Immune Deficiency Disease. With a PIDD dx insurance would likely cover the IVIG.

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Okay so while my family FALLS APART over this PANDAS I can't get any help. I know I'm impatient but I needed a cure YESTERDAY!! I hear so many good things about IVIG but nobody can tell me who to go to how to get the treatment how much it cost does insurance cover it. It's extremely frustrating. I feel like the whole world is playing 'I've got a secret' around me! Please can anyone give me SPECIFICS about what kind of doctor does the treatment, does United Health Care cover it has anyone found out, how much does it costs???? My pediatrician is being very sympathetic, and he says 'he's waiting for phone calls' well COME ON. Since there's not a destinct start and stop time - there is but no body can predict WHEN that will be - I feel like a ticking time bomb! My son has RAGE, I MEAN RRRAAAAAGGGGEEE with this.

 

I believe IVIG is TYPICALLY done by Immunologists but that does not mean others physician's can not write the orders. Our dd receives her IVIG at her allergy doctor's office. Many of the illnesses "approved" for IVIG are either autoimmune illnesses or primary immune illnesses. Many hospitals also have an in house infusion center where IVIG is completed.

 

I would start with having the Cunningham blood word completed and then have your Ped run a complete Immunological Panel as well. The immuno panel should include blood work for IgG, IgG subclasses, IgM, IgA and the Pneumococcal, Diptheria & Tetanus Titers. Many of these kids are failing some portion of the Immunological panel which may mean a diagnose of a Primary Immune Deficiency Disease. With a PIDD dx insurance would likely cover the IVIG.

 

Bubba's mom-

 

We are still in Chicago, having finished up our 10 yo son's IVIG with Dr. K. Our son is a bit over 100 lbs. We had to hand over a $10,700 bank check to Oak Brook Med & Surgical Centre. We were told $112 per gram/IVIG . Dr. K uses 1.5 g per Kg of body weight. Do a little math to find the total number of grams needed. Multiply by the $112. We were told 1800 for the room (900/day) There must have been some other fees to get up to $10,700! Dr. K's fee was $2400 and there was $350 for the office visit the day before the IVIG. Our Iowa BCBS did pre-auth us. They did file for us so we are just waiting to get reimbursed. We are out of network so at least 30% is the amount we will be left with. It's all in the coding.

 

Oh, how I can empathize with the rages! I pray that as our son heals, so can our family. How old is your son?? We and Dr K are convinced that the PANDAS started at a very young age for him (and us). Get help as soon as you can. We tried for years, only to have alphabet diagnoses attached to him. It will not get better, only more dangerous/scary. Give Dr. K a call Monday.

 

Best wishes.

 

Dawn

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I think what kind of doctor varies a bit- for sure immunologists, rheumatologists and possibly internal disease specialists. Everybody here seems to have a unique experience with this- I'm not sure what kind of Docs Kovacevic and Latimer are. We seem to all go with doctors who are willing to do IVIG more than a particular type of doctor...

 

Dr. K is a pediatrician

 

Dr. Latimer is a pediatric neurologist

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I have no good news for you.

You have UHC/ Aetna.

They stink.

DS9 had an immune deficiency but it was not low enough. They regard Pandas treatment by IVIG as experimental. Despite not using the word PANDAS we were denied.

My DAN doctor has a place where IVIG is administered. My DS is underweight so the amount he needs is less than many.

My Dan doctor's overhead is low so this makes it cheaper too. Hospitals charge for sleepovers of course. We are staying "off campus"

 

Cost of one treatment: a little over $4,000. $200 more for housing.

 

So we're doing one treatment. I'll post when I have news.

 

Sorry, I'd say get new insurance if possible.

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Here is some IVIG coverage info from UHC's website:

 

https://www.unitedhealthcareonline.com/b2c/...ulin_(IVIG).htm

 

hope that link works!

 

From there: Bolding mine

Coverage Rationale

Immune globulin is PROVEN for the following:

 

Autoimmune Diseases

# Autoimmune uveitis

# Dermatomyositis and Polymyositis

# Diabetes mellitus (Antibodies against islet cell antigens, including glutamic acid decarboxylase II, are implicated in the autoimmune pathogenesis of insulin dependent (type 1) diabetes mellitus.)

# Graves ophthalmology

# Immune thrombocytopenic purpura (ITP)

# Severe rheumatoid arthritis

 

Infectious and Infection-related Diseases

# Bacterial infections in lymphoproliferative disease

# Cytomegalovirus (CMV) induced pneumonitis in solid organ transplants

# Kawasaki disease

# Neonatal sepsis

# Rotaviral enterocolitis

 

Miscellaneous Uses

# Delayed-pressure urticaria

# Prevention of acute humoral rejection in renal transplantation

# Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (streptococcal infections induce exacerbation of symptoms in some children with obsessive-compulsive and tic disorders)

# Prevention of infection and acute graft vs. host disease (GVHD) after bone marrow transplantation

# Severe, persistent, high-dose, steroid-dependent asthma

# Toxic epidermal necrolysis and Stevens-Johnson syndrome

Also from there- bolding mine:

# Primary Humoral Immunodeficiencies

IVIG will be covered for use as replacement therapy in patients with primary immunodeficiencies in whom severe impairment of antibody capacity is present in the following conditions:

# Congenital agammaglobulinemia.

# Common variable immunodeficiency.

# Wiskott-Aldrich syndrome.

# X-linked immunodeficiency with hyper-IgM.

# Severe combined immunodeficiencies.

# Deficient qualitative and/or quantitative antibody production.

# Have at least one bacterial infection directly attributable to this deficiency.

 

I think what they will cover depends on which UHC plan you are on, and this document refers to medicare coverage...my daughter has secondary insurance coverage from medicare.

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Yes, United Health Care covered our dd's IVIG (August). We actually didn't know if it would be covered and didn't put down PANDAS as the diagnosis. I think the code was something like immune deficiency / encephalitis other....b/c at the time, when dh looked it up it didn't seem like PANDAS would be covered. I don't know if this is a recent change?

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Yes, well, here is all the loathsome Aetna folks will NOT cover. It's a wonder they call themselves a health care insurer! Encephalopathy is even dismissed. :angry:

 

Aetna considers IVIG therapy experimental and investigational for any of the following conditions (in alphabetical order):

 

APPENDIX A

Acquired factor VIII inhibitors

Acquired von Willebrand's disease

Acute lymphoblastic leukemia

Adrenoleukodystrophy

Amyotrophic lateral sclerosis

Angioedema

Antiphospholipid syndrome

Aplastic anemia

Asthma

Autism

Autoimmune chronic urticaria

Behçet's syndrome

Cardiomyopathy, acute

Chronic fatigue syndrome

Chronic sinusitis

Clostridium difficile colitis

Congenital heart block

Convulsive syndromes

Cystic fibrosis

Dermatosis, autoimmune blistering

Diabetes mellitus

Diamond-Blackfan anemia

Dysautonomia, acute idiopathic

Eczema

Encephalomyelitis, acute disseminated

Encephalopathy

Endotoxemia

Epilepsy

Goodpasture's syndrome

Hemolytic transfusion reaction

Hemolytic-uremic syndrome

Hemophagocytic syndrome

HTLV-1 associated myelopathy

Idiopathic lumbosacral flexopathy

Immune-mediated neutropenia

Inclusion body myositis

Infection prevention and control in newborns

Intractable seizures

Leukemia, acute lymphoblastic

Lower motor neuron syndrome

Malignancy, nonhematologic

Multiple sclerosis - primary progressive or secondary types

Myalgia, myositis, unspecified

Myelopathy, HTLV-I associated

Necrotizing enterocolitis

Nephritic syndrome

Nephropathy, membranous

Nephrotic syndrome

Non-immune thrombocytopenia

Ophthalmopathy, euthyroid

Opsoclonus-myoclonus

Oral use of IVIG for any indication

Otitis media, recurrent

Paraneoplastic cerebellar degeneration

Paraneoplastic syndromes

Paraproteinemic neuropathy

Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection (PANDAS)

POEMS syndrome **

Polyarteritis nodosa

Progressive lumbosacral plexopathy

Radiculoneuritis, Lyme

Rasmussen's syndrome

Recurrent otitis media

Recurrent fetal loss

Red cell aplasia not due to Parvovirus B19

Refractoriness to platelet transfusion

Reiter's syndrome

Renal failure, acute

Rheumatoid arthritis (adult and juvenile)

Scleroderma

Sensory neuropathy

Systemic vasculitides

Thrombocytopenia (non-immune)

Thrombotic thrombocytopenic purpura (TTP)

Toxic epidermal necrolysis

Uveitis

Vasculitis associated with other connective tissue diseases

Vogt-Koyanagi-Harada syndrome

Wegener's granulomatosis

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oh my gosh, BLESS YOU!!! How did you find that??? Thank you. You know though, we are in St. Louis, some of the best hospitals in the nation here, NOT ONE DOCTOR THAT HAS EXPERIENCE WITH PANDAS!!! It is so frustrating. Even my pediatrician can't find anyone.

Thanks for your help.

 

 

 

:

Here is some IVIG coverage info from UHC's website:

 

https://www.unitedhealthcareonline.com/b2c/...ulin_(IVIG).htm

 

hope that link works!

 

From there: Bolding mine

Coverage Rationale

Immune globulin is PROVEN for the following:

 

Autoimmune Diseases

# Autoimmune uveitis

# Dermatomyositis and Polymyositis

# Diabetes mellitus (Antibodies against islet cell antigens, including glutamic acid decarboxylase II, are implicated in the autoimmune pathogenesis of insulin dependent (type 1) diabetes mellitus.)

# Graves ophthalmology

# Immune thrombocytopenic purpura (ITP)

# Severe rheumatoid arthritis

 

Infectious and Infection-related Diseases

# Bacterial infections in lymphoproliferative disease

# Cytomegalovirus (CMV) induced pneumonitis in solid organ transplants

# Kawasaki disease

# Neonatal sepsis

# Rotaviral enterocolitis

 

Miscellaneous Uses

# Delayed-pressure urticaria

# Prevention of acute humoral rejection in renal transplantation

# Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (streptococcal infections induce exacerbation of symptoms in some children with obsessive-compulsive and tic disorders)

# Prevention of infection and acute graft vs. host disease (GVHD) after bone marrow transplantation

# Severe, persistent, high-dose, steroid-dependent asthma

# Toxic epidermal necrolysis and Stevens-Johnson syndrome

Also from there- bolding mine:

# Primary Humoral Immunodeficiencies

IVIG will be covered for use as replacement therapy in patients with primary immunodeficiencies in whom severe impairment of antibody capacity is present in the following conditions:

# Congenital agammaglobulinemia.

# Common variable immunodeficiency.

# Wiskott-Aldrich syndrome.

# X-linked immunodeficiency with hyper-IgM.

# Severe combined immunodeficiencies.

# Deficient qualitative and/or quantitative antibody production.

# Have at least one bacterial infection directly attributable to this deficiency.

 

I think what they will cover depends on which UHC plan you are on, and this document refers to medicare coverage...my daughter has secondary insurance coverage from medicare.

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    1. 1. If you are the biological mother of a child diagnosed with PANDAS or PANS (or you believe the child has PANDAS or PANS), please select your blood type below:


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