Sad Day...

[Phasmid]

Not that I'm really surprised, but irritated nonetheless. Anthem has denied further infusions (he was to get every 21 days). He had his first on Jan. 6, which he benefitted greatly from. He had low dose of 25g total. He was to get high dose tomorrow. I am crushed, as I have learned that his biggest remaining issue, trichotillomania, resolves with high dose infusion (although not our doc, Dr. K. was nice enough to communicate with me by e-mail very briefly).

 

Charge was billed as "unspecified immune" but his doc is treating him for lack of pneumococcal response. I called insurance co. and the only info available is a tag that says "medically unnecessary." So, I prepare myself for the appeal process, as many of you have done, unless doc can talk some sense into the stupid reviewers. I'm ready to cry...

 

 

[JAG10]

Phasmid,

 

I will offer my dd11 as evidence to Dr. K's claim. Although not exactly the same thing, skin picking is viewed as very similar to trichotillomania. My dd was severe, picking her skin to the point of ulceration and wide spread scarring. With one HD IVIG this completely stopped, immediately and has not returned at all since May 2010. Even with a few mosquito bite triggers over the summer, not an issue, period.

 

Best wishes getting insurance to reverse their decision.

[Phasmid]

Thank you so much. It helps to read as many of these as possible to keep from losing my mind. I just talked with the office and they are working on it, but said ins. co. did NOT tell them that it "wasn't medical necessity," but that they want him to have home infusion. I don't really understand--- seems like home infusion would be a (H-E-double hockey sticks) of a lot more money then the clinic fees, but I don't know exactly how charges are broken down. The major amount billed was for "product" according to the hospital. How is the product going to be any less expensive? The other charges were negligible- the doc's fee (same as ov), and the IV administration itself- an amount not too terrible to pay out of pocket. A few hundred is all. I don't understand, but sounds like doc's people are working on it.

 

If we DO get the go-ahead for in-home infusion, will it be okay to get a high dose (1.5g) at home?? Anyone else get a high dose at HOME?

 

 

[Phasmid]

Oh, and I am very happy to hear that it helped your daughter so much! That makes me so happy. I hope that she knows she has been helped?

 

 

[JAG10]

Yes, she does. She is old enough that I have discussed what is going on and why the IVIG is taking place, at least as well as I understand it; lol

 

There have been other folks who have received HD IVIG at home. There is a wide swing in what different facilities will charge for the "magic juice" (IG)

So perhaps, their cost is $40/gram and they charge the patient $120/gram, but the facility fees are minimal. For a home infusion, your insurance company has negotiated a price with their pharmacutical provider and that is what will be paid plus the home health nurse's fee, also a negotiated contract. If Dr. B had not obtained approval for my dd who is getting her 2nd HD IVIG next week to help with so residual concentration/task completion issues, my plan B was home health. I had called Costco and they quoted me a price of $46/gram for Gamunex plus $20 for the Dextrose flush. That is much, much less than I paid out of pocket at OBSC. There are a few different variables that can be manipulated; the facility fee, the doctor's fee and the cost of the IG. We have to look at those 3 variable in concert to know a good deal.

[eljomom]

Phasmid---I'm sorry for the last-minute crash:( It seems like today is the day of possible let-downs, with doc appt, etc.....but praying it will go through for you.

 

I don't mean to jump on this topic--but how do you figure out what HD and LD IVIG is good for -- like trich, etc..? My daughter had some ocd for a few years---didn't know about pandas....then after high fever this summer and exposure/illness with staph impetigo for 3 months....went from a couple tics to over a dozen, sep. anx, more hyper, etc... The tics are still there, no really lessening. Maybe a little less sep. anx, on abx, but nothing drastic. But dd is still basically functioning (we homeschool). I've heard that tics are hard to get rid of, but wondering if you remember seeing anything on what works best for tics when you were searching the trich. My dd does rub her hair, as do I (I have mild trich myself, and brother has TS/ocd-----both of us chronic strep as kids!!!go figure).

 

Sorry if this is bad timing to ask---I can post on forum if you're not up for answering right now...

[pathfinder]

I am so mad at this insurance company. I really like to ask Anthem if they have better ( or any other treatment) option for your son. Don't they see that it has to be treated? I don't know but maybe you need a doctor who could present your son's case stronger and better to Anthem? And yes you can get HD IVIG at home. I will PM you

Michelle

[Phasmid]

Thanks for the support. Good to hear he can get the high dose at home as well. I heard from doc that they will pay, but has to be at home. I am a little afraid of this, because he had such a bad headache/nausea a day after LOW dose. So.. what may happen after high dose? Might it be worse side effects? Oh well. We'll figure it out. Thanks again.

 

 

 

I am so mad at this insurance company. I really like to ask Anthem if they have better ( or any other treatment) option for your son. Don't they see that it has to be treated? I don't know but maybe you need a doctor who could present your son's case stronger and better to Anthem? And yes you can get HD IVIG at home. I will PM you

Michelle

[Phasmid]

Hi Eljo,

all I have to go on, regarding how one knows what dose does what, is what Dr. K. told me about treating the pre-anorexia body dysmorphic stuff and the trichotillomania. I am of no help in terms of tics. Dr. K said that only high dose treats the disordered body image, and that trichotillomania has resolved with high dose in his practice. My son's doc has never seen trichotillomania, although he routinely uses IVIg for PANDAS, but he has only about a dozen cases. So, I had to ask Dr. K. and he was so nice to reply (even if it was exactly three words).

 

What antibiotic is your daughter on? The last time my son had tics, he actually had severe ocd and coprolalia, he responded VERY quickly to something that still perplexes me to this day- Flagyl! That was followed by vancomycin until he was over it. I can't wrack my brain over it anymore as to why that worked when (if strep) it shouldn't have... really. However, he also had bronchitis/bronchiolitis and possibly pneumonia from Mycoplasma pneumoniae a few weeks earlier- still has hugely elevated IgG. If THAT was the trigger for his symptoms, then the Flagyl and vanco may have been effective for that. I just don't know anymore!

 

Phasmid---I'm sorry for the last-minute crash:( It seems like today is the day of possible let-downs, with doc appt, etc.....but praying it will go through for you.

 

I don't mean to jump on this topic--but how do you figure out what HD and LD IVIG is good for -- like trich, etc..? My daughter had some ocd for a few years---didn't know about pandas....then after high fever this summer and exposure/illness with staph impetigo for 3 months....went from a couple tics to over a dozen, sep. anx, more hyper, etc... The tics are still there, no really lessening. Maybe a little less sep. anx, on abx, but nothing drastic. But dd is still basically functioning (we homeschool). I've heard that tics are hard to get rid of, but wondering if you remember seeing anything on what works best for tics when you were searching the trich. My dd does rub her hair, as do I (I have mild trich myself, and brother has TS/ocd-----both of us chronic strep as kids!!!go figure).

 

Sorry if this is bad timing to ask---I can post on forum if you're not up for answering right now...

[pathfinder]

Phasmid

 

In home infusion is not a bad option at all. Crescent health care has a infusion center where my son had his infusion and I did not see any differences from Hospital setting ( he had one in hospital). My son did them at their infusion center and Priscilla's dd did them at her home. I really don't think there is disadvantage doing it outside the hospital ( I know you are not going to have UCLA setting--- my older son is at UCLA and I love UCLA)

Crescent health care( or other infusion centers) only does IVIG so they know what they are doing and you could trust them as much as UCLA, I think.

Michelle

[Phasmid]

Oh, gosh, thanks so much for letting me know. Just that we're kinda out in the "sticks" where I am. But I'm sure our little hospital could handle the rare allergic reaction or other problem. And I realize that many kids get this routinely, not a big deal. Thanks again.

 

Phasmid

 

In home infusion is not a bad option at all. Crescent health care has a infusion center where my son had his infusion and I did not see any differences from Hospital setting ( he had one in hospital). My son did them at their infusion center and Priscilla's dd did them at her home. I really don't think there is disadvantage doing it outside the hospital ( I know you are not going to have UCLA setting--- my older son is at UCLA and I love UCLA)

Crescent health care( or other infusion centers) only does IVIG so they know what they are doing and you could trust them as much as UCLA, I think.

Michelle

[eljomom]

Phasmid--thanks for explaining.....and it sounds like you have Anthem, which is what we have, so this stinks for if we do consider IVIG

 

Very interesting about Flagyl---why did they prescribe Flagyl vs. something else? I only know flagyl from when my oldest had C-diff at age 2....

[Phasmid]

Because he had a positive stool toxin test for C. diff., so Flagyl is first course of action. Just happened to make all is overnight onset OCD/vocal tics go away in matter of days. Yet, his docs didn't think that any of his psych. symptoms could be related to C. diff infection. His G.I. specialist, however, didn't doubt that some symptoms could result, as the toxins produced by Clostridium difficile are pretty nasty, although not known neurotoxins, like Clostridium botulinum produces. Toxins that are released in the gut can travel directly to the brain via the vagus nerve. He just shrugged his shoulders. Anyway, we had to add vancomycin when he relapsed after stopping flagyl! That really did the trick! Crazy, huh? Maybe some of this IS gut related!?

 

 

Very interesting about Flagyl---why did they prescribe Flagyl vs. something else? I only know flagyl from when my oldest had C-diff at age 2....

[amyjoy]

HI PHASMID

i hate anthem, they denied us and 2 children we have treated with IVIG in our practice - well, one we treated and one who is struggling with the company and continues to elevate the level of dialogue to higher and higher people.

 

I think, who the heck are they to deny coverage, when other insurances do cover it, so does canada and other countries' own healthcare systems. Anthem is outdated and needs to be pushed. We are working on a packet for them but also i have my ear on this mom who is brazenly working her way up the anthem system to push for ivig coverage for her DS. I will let you know any info i have on that. also i told her that if she is able to push it into coverage we may hire her to do so for us/ our practice and to help with the overall cause.

 

Meanwhile, we ended up having to fundraise the money to treat my son, just in November, over TG break. And he is doing amazing, amazing. Tics down, OCD down, anxiety down. Last night a mom at my son's school said to me, after the basketball game (someone who does not know what my DS has been through), she said that parents in the stands were all remarking on the incredible progress my DS has made on the bball court and in his coordination in the last 2 months.

 

Ta-DAH!!!!!!

Who knows what tomorrow brings, but today brings great acknowlegement from the universe that its the right thing.

 

KEEP GOING and PM me if you want to conspire.

Amy

[Phasmid]

THANK YOU, THANK YOU!!!!!!

 

I will be in touch by pm with you-

 

SOOOOO HAPPPPPYYYYYYY FOR YOUR SON!! I almost cried reading that... okay, i DO have tears