Getting approval for IVIG/PEX need help!

[laurenjohnsonsmom]

Soooooooo, if you were trying to get your insurance company to approve IVIG/PEX what...."Well-controlled studies of clinically meaningful endpoints, published in refereed medical literature, Published formal technology assessments, Published reports of national professional medical associations, Published national medical policy organization positions & Published reports of national expert opinion organizations", would YOU use as supporting information???

 

Does anyone know the new 2010 diagnostic codes for IVIG/PEX???

 

 

(The following is from our insurance website)...

 

Covered Services

TRICARE covers most inpatient and outpatient care that is medically necessary and considered proven. However, there are special rules or limits on certain types of care, while other types of care are not covered at all. This section provides details about services that TRICARE covers, limits and excludes. This is a guide to your TRICARE coverage - it isn't all-inclusive. Some services or treatments require prior authorization. Your coverage and out-of-pocket costs are dependent on your eligibility as a TRICARE beneficiary and may vary according to the program option you're using. Contact your regional contractor or TRICARE Area Office for more information.

 

 

WHAT IS COVERED...

Appropriate and necessary treatment of a beneficiary's illness or injury according to accepted standards of medical practice and TRICARE policy. Medical necessity must be documented in clinical notes.

 

By law, Title 10 U.S.C. Section 1079(a)(13), TRICARE may only pay for medically necessary care. This statute has been implemented by the Code of Federal Regulations (32 CFR 199.4), which states that TRICARE will pay for "medically necessary services and supplies required in the diagnosis and treatment of illness or injury." Therefore, TRICARE can cost share only medically necessary supplies and services. Benefits are restricted to those drugs, devices, treatments, or procedures for which the safety and efficacy have been proven to be comparable or superior to conventional therapies. The definition of reliable evidence in 32 CFR 199.2( (which is also included in Chapter 1, Section 2.1 of the TRICARE Policy Manual [August 2002 edition]) provides the TRICARE hierarchy of reliable evidence used to determine whether a drug, device, medical treatment or procedure has moved from the status of unproven to the position of nationally accepted medical practice as follows:

 

1.Well-controlled studies of clinically meaningful endpoints, published in refereed medical literature

2.Published formal technology assessments

3.Published reports of national professional medical associations

4.Published national medical policy organization positions

5.Published reports of national expert opinion organizations.

[Debbie1]

How is Lauren doing?

[thereishope]

Here's one thread that talked about coding options...

 

http://www.latitudes.org/forums/index.php?...;hl=unspecified

[dcmom]

How is Lauren? I assume by your question, she is still having issues- I am sorry.

 

The insurance thing is tough. Dr Latimer's office and Gtown University dealt with my insurance company and had plasma pheresis pre approved. We went and had the procedure done. Then they denied it! We are now on our first appeal.

 

To tell you the truth- I am just glad it was pre approved- it would have been a problem for us to pay the 30k up front- we probably wouldn't have had the procedure done. It has, in my opinion, been really helpful to Julia (not a cure, but I think has let us stay closer to baseline).

 

We will deal with the insurance company and the hospital over time....

[laurenjohnsonsmom]

How is Lauren doing?

 

We have recently spoke with both the PANDAS doctor and her immunologist regarding Lauren's increase in her sneezing tic coinciding with the decrease/taper of the steroids (she had substantial improvement initially with the 30&25mg but no sustained improvement with the decrease). They both suggested that plasmapheresis and ivig (back- to-back) in the near future, could be helpful, but neither can do it. We have made an appointment with Dr. Latimer next Wednesday, as she is the only doc I know if who can do both. Has anyone else done PEX/IVIG back to back and the result?

 

Lauren also started to have severe stomach issues..just in the last few days, today being the worst. I gave her a prilosec (dr. B's suggestion)., along with adding another probiotic. She also take Aloe Vera extract and Olive Leaf Extract. We seem to now have it under control but any other helpful advice (besides common sense suggestions ie:take with food) would be appreciated. She is on week three of 875mg Augmentin and a 3 day tapered steroid treatment. I also want to add that Lauren has low (below normal) total IGg and failed (had negative result) on most of her pneumococcal titers which also helps her qualify.

 

I hope all is well with you and your family..

[dcmom]

Lauren'smom- I am so sorry to hear about Lauren's struggle. My daughter had pex with Dr Latimer (no IVIG as of yet). It has really helped her, although is has not been a cure. I do think that the combo of IVIG and Pex (I am not sure of the order) is the best treatment for most of these kids, unfortunately it is just not that accessible. Dr Latimer's office will help you with the pre approvals.

 

What type of stomach issues is she having? Is it antibiotic related? It seems many kids her (including one of mine) have stomach issues related to pandas.

 

I wish you luck with your appt with Dr L- I think you will really like her. Keep us posted...

[sf_mom]

Unfortunately, with PANDAS there is no 'overnight' fix. I highly recommend PEX followed by monthly IVIG or high dose IVIG per Dr. K's protocol followed by monthly supportive IVIG and high dose antibiotics. Lauren should qualify for monthly IVIG based on IgG results... PID (primary immune deficiency).

 

Dr. K has treated our oldest son with two larger doses IVIG with a third treatment next week. In conjunction with higher dose antibiotics our son is close to symptomless. His mood has improved 120%.... he is a different child since treatment. We are only experiencing 'flairs' of TICS at the moment. He has complained of stomach aches and headaches but that has improved with each treatment and mega probiotics.

 

Stanford Children's Hospital here in CA will be potentially treating all three of our children pending lab results based on PID.

 

-Wendy

[EAMom]

My impression is that there are less GI issues with Azith. (vs. Augmentin). Steroids can also cause stomach issues. Of course it could be something else altogether (even Pandas).

 

Is Lauren vomiting or in pain or both (or other?).

[Kayanne]

How is Lauren doing?

 

We have recently spoke with both the PANDAS doctor and her immunologist regarding Lauren's increase in her sneezing tic coinciding with the decrease/taper of the steroids (she had substantial improvement initially with the 30&25mg but no sustained improvement with the decrease). They both suggested that plasmapheresis and ivig (back- to-back) in the near future, could be helpful, but neither can do it. We have made an appointment with Dr. Latimer next Wednesday, as she is the only doc I know if who can do both. Has anyone else done PEX/IVIG back to back and the result?

 

Lauren also started to have severe stomach issues..just in the last few days, today being the worst. I gave her a prilosec (dr. B's suggestion)., along with adding another probiotic. She also take Aloe Vera extract and Olive Leaf Extract. We seem to now have it under control but any other helpful advice (besides common sense suggestions ie:take with food) would be appreciated. She is on week three of 875mg Augmentin and a 3 day tapered steroid treatment. I also want to add that Lauren has low (below normal) total IGg and failed (had negative result) on most of her pneumococcal titers which also helps her qualify.

 

I hope all is well with you and your family..

 

I'm sorry that you didn't see a sustained relief from the steroids. I think eveyone else has given you good advice, so I just want to add that I have read that Olive Leaf Extract can decrease the effectiveness of anitbiotics, so it is something that you may need to investigate further, if you have Lauren on both.

 

http://www.anyvitamins.com/olive_leaf_extract.htm

 

Best of Luck--Good luck with your appointment with Dr. Latimer.

 

~Karen

 

http://www.anyvitamins.com/olive_leaf_extract.htm

[fuelforall]

I also want to add that Lauren has low (below normal) total IGg and failed (had negative result) on most of her pneumococcal titers which also helps her qualify.

 

 

 

Were her sub-class 1 IGG numbers low as well?

[Debbie1]

Steroids can definitely be hard on the stomach. My daughter (age 12) has had two rounds of steroids in the past year. The first, prescried by a doctor we no longer see, told us to give her Zantac while taking the steroid to protect her stomach. For the second round, prescribed by Dr. L., we were told we do not have to give her the Zantac right away, but if she has stomach pains, we should start it. I am not sure if Zantac and Prilosec work the same way, but if she continues to have stomach issues, you may want to inquire about it.

 

I am sorry I am unable to help with the research part of your question. We have not yet pursued PEX/IVIG (but may if she is not better in the next 3-6 months), but I am sure others will chime in to help you. Dr. L. will probably be very helpful in getting procedures approved by insurance as well.

[Buster]

TRICARE hierarchy of reliable evidence used to determine whether a drug, device, medical treatment or procedure has moved from the status of unproven to the position of nationally accepted medical practice as follows:

 

1.Well-controlled studies of clinically meaningful endpoints, published in refereed medical literature

2.Published formal technology assessments

3.Published reports of national professional medical associations

4.Published national medical policy organization positions

5.Published reports of national expert opinion organizations.

 

Realistically, you can probably only get to #1 on this list.

 

I'd use [Perlmutter1999]Perlmutter SJ, Leitman SF, Garvey MA, "Therapeutic plasma exchange and intravenous immunoglobulin for obsessive-compulsive disorder and tic disorders in childhood", Lancet 1999; 354 : 1153 – 58 http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf

 

as the starting point. Then add Kessel

http://www.jimmunol.org/cgi/reprint/179/8/5571

 

and probably Kirvan:

[Kirvan2006] Kirvan CA, Swedo SE, Kurahara D, Cunningham MW, "Streptococcal mimicry and antibody-mediated cell signaling in the pathogenesis of Sydenham's chorea". 2006 Autoimmunity 39 (1): 21–9. http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf

 

Not sure if Dr. T can offer anything on 2-5.

 

Oh, by the way, if anyone throws Singer or Kurlan at you, you can use their recent reply in http://pediatrics.aappublications.org/cgi/...22/5/1157-a.pdf that says "We are unable to fully disagree with the conclusion of Alvarenga et al that “GABHS may still have a major role in PANDAS,” because as we pointed out, our study was designed to examine the relationship between acute GABHS infection and exacerbations of PANDAS but not the onset of PANDAS." They studied kids with long term tics (> 3 years). Did not study children with signfiicantly varying OCD presentation. It bugs me a lot that those guys can pull Tourettes kids and then try to draw some conclusion about PANDAS rather than just usign the money to check the experiments of Kirvan. Sigh.

 

 

Buster

[melanie]

TRICARE hierarchy of reliable evidence used to determine whether a drug, device, medical treatment or procedure has moved from the status of unproven to the position of nationally accepted medical practice as follows:

 

1.Well-controlled studies of clinically meaningful endpoints, published in refereed medical literature

2.Published formal technology assessments

3.Published reports of national professional medical associations

4.Published national medical policy organization positions

5.Published reports of national expert opinion organizations.

 

Realistically, you can probably only get to #1 on this list.

 

I'd use [Perlmutter1999]Perlmutter SJ, Leitman SF, Garvey MA, "Therapeutic plasma exchange and intravenous immunoglobulin for obsessive-compulsive disorder and tic disorders in childhood", Lancet 1999; 354 : 1153 – 58 http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf

 

as the starting point. Then add Kessel

http://www.jimmunol.org/cgi/reprint/179/8/5571

 

and probably Kirvan:

[Kirvan2006] Kirvan CA, Swedo SE, Kurahara D, Cunningham MW, "Streptococcal mimicry and antibody-mediated cell signaling in the pathogenesis of Sydenham's chorea". 2006 Autoimmunity 39 (1): 21–9. http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf

 

Not sure if Dr. T can offer anything on 2-5.

 

Oh, by the way, if anyone throws Singer or Kurlan at you, you can use their recent reply in http://pediatrics.aappublications.org/cgi/...22/5/1157-a.pdf that says "We are unable to fully disagree with the conclusion of Alvarenga et al that “GABHS may still have a major role in PANDAS,” because as we pointed out, our study was designed to examine the relationship between acute GABHS infection and exacerbations of PANDAS but not the onset of PANDAS." They studied kids with long term tics (> 3 years). Did not study children with signfiicantly varying OCD presentation. It bugs me a lot that those guys can pull Tourettes kids and then try to draw some conclusion about PANDAS rather than just usign the money to check the experiments of Kirvan. Sigh.

 

 

Buster

 

 

I got approval not easy but under immune defiency dx he was approved I also got a pediatric specialist from BCBS and cried alot I would do anything. I was approved had the Iv then wanted to do it again got a refusal then Found Dr T he helped alot so were just awaiting the next infusion .I wish it was tomorrow bbut we have to wait just a little while.I encourange you to call the insurance company over and over ,cry tell them you may have to put your child in the hospital for long term care (thats very expensive) (not that your going to) find out a supervisiors name ask your md to do a appeal, call your employer dont accept no no matter what.

 

Melanie