Beyond a bummer....

[tu4four]

We saw our lyme doc at the beginning of last week and a new immunologist on wed. Our lyme doc thinks that lyme/Bart/babesia are not issues for her right now. We have treated for parasites, viruses, tested for heavy metals. Through ART, our doc disn't really see mold as an issue.

 

I was so excited on wed when the new immunologist said he thought we should pursue ivig. He took many, many vials of blood, and I was so sure we'd be able to justify iviG to insurance.

 

But...I just got off the phone with the immuno's ofc, and her blood work will not convince the ins co. So....the nurse suggested we try to get a patient advocate, etc....

 

My daughter is having a lumbar puncture on wed, and I have been hoping that we might find an auto-immune encephilitis that would convince ins to so ivig...but the nurse at the immuno ofc said that encephilitis would not convince ins to do ivig, either.

 

Where do I go from here??? And would it even be beneficial for us to scrape together 15k to do a one time ivig? The immuno was suggesting ivig every 4-6 wks....

[smartyjones]

your ART doc isn't finding anything that seems problematic?!

[tu4four]

Nothing that we tested for... He said he wasn't finding lyme/Bart/babesia. We have treated for parasites, viruses, he didn't find those either. We've done urine testing for heavy metals--nothing was too high, and our doc doesn't think that is an issue.

 

We just did the urine test for kpu...she was within normal range, but I think supplementing has been helping her brother. I asked him about that doe her, and he worked with her, said she could work up to 7 CORE.

 

He gave us a lot of supplements to help boost immune function. And some just to keep lyme . and co at bay herbals. Have me a couple of other things because I asked for them.

 

So I don't know if we are just now dealing with her immune system confusion or what. I wonder if we should try a steroid burst but have steered very clear of that in the past because of lyme.

[qannie47]

My ds just went through a battery of tests with a hospital admission. Admitting neurologist was smug in saying that ALL his blood work was clean and that he was SURE that his LP was not going to show anything significant. Sure enough...the O bands....autoimmune disorder....his peds doc just wrote a letter with an autoimmune code and asked for monthly ivig treatments be covered. I am not pushing every kid to undergo an LP, but that is where we found answers that helped when this time around he looked squeaky clean from a blood work perspective....

[tu4four]

You give me hope!!!! Had he previously had igg testing with an immuno? Hers was normal, and apparently abnormal on that was what we needed for ins.

[szcasey]

Try Googling your insurance company's IVIG policy (e.g., CIGNA IVIG coverage policy). There are exceptions...

 

It's a start... You will at least know what isn't covered.

 

Good luck.

[PowPow]

tu4four,

has there been ANY positive signs toward autoimmunity? even slightly?

positive sed rate, ANA, dsDNA, anything?

 

after this testing, I would,for sure, try the steroids. They are life -changing for my girls!

 

I am really hoping you find something.

[JoyBop]

I am in the same boat. Coincidentally, we just went to immuno yesterday for first visit too and had 10 vials of blood drawn. Did you get the results yet? If not, you dont yet know if there is a condition that will be covered.

I looked up my insurance policy on IV IG and it specifically bans coverage of IV IG for PANDAS and any post infectious disease. That really blows! But if they do find any immune deficiencies, there is a chance that you will get coverage.

 

Qannie, you are so fortunate!! My question is, will they cover the dosage needed for PANDAS? I understand that its a very different dose than immune deficiencies. I wonder if that complicates things?

[tu4four]

tu4four,

has there been ANY positive signs toward autoimmunity? even slightly?

positive sed rate, ANA, dsDNA, anything?

 

after this testing, I would,for sure, try the steroids. They are life -changing for my girls!

 

I am really hoping you find something.

Her only real test that points to autoimmune (possibly) is a high TPO--but only mildly high. And, of course, we have a family history of autoimmune as long as my arm. I took IgG shots weekly as a little kid until I had my tonsils out. My dad died of complications from an autoimmune issue--Wegner's Granulomatosis. She had a high Cam Kinase II level. Other than that.....

 

I did check our insurance company's website even before we saw the immunologist, so I knew that chances were slim but was hoping for some fancy wording or something that would turn the key. I know that our neurologist is not expecting to find anything on the lumbar puncture, but one can hope, right?

 

I guess after the lumbar puncture I will try to use the best anti-inflammatories I can find to see if that might help. Does that seem reasonable?

 

As an aside (sort of), my husband has been working two or three jobs for the past few years, and his contracts have run out, so he is now down to just one job. While this is great for family time, you can imagine what it is going to do to our "get the kids well" budget. And he is so depressed thinking he will have to work until the day he dies. So....prayers appreciated.....

[pr40]

long time ago i did research on encephalitis. my memory is that it can be a clinical diagnosis, i.e. one that depends on the interpretation of a particular dr. who would base her judgment on symptoms. so, one way to get IVIG covered is to find dr who would diagnose encephalitis.

[qannie47]

My sons igg levels were normal, but on the very low side of normal. The lab reported 0.8-I don't remember 2nd range number off top of my head. My ds's were 0.9. So that is low. Also, ds had ivig 3 months prior to this lab work...so I do wonder what that lab work would have showed prior to IVIG.

 

Does anybody know if IVIG would have increased is igg levels?

[rowingmom]

 

tu4four,

has there been ANY positive signs toward autoimmunity? even slightly?

positive sed rate, ANA, dsDNA, anything?

 

after this testing, I would,for sure, try the steroids. They are life -changing for my girls!

 

I am really hoping you find something.

 

I took IgG shots weekly as a little kid until I had my tonsils out.

 

tu4four - so there was an improvement in IgG after your tonsils were removed?

[tu4four]

rowingmom--honestly, I don't know I'd the igg shots helped me as a kid or not. I know I was a sickly kid with a lot of strep, lots of allergies, etc....I think perhaps igg shots were easier to get at the time, and my doctor saw that I has a significantly weakened immune system just through how often I was getting sick. Guess it seemed like a logical choice to him. The most I ever had in the way of diagnostic testing was the series of scratch tests.

 

I know our stuff seems crazy! Like maybe it doesn't respond in the way everybody else's illness does. And I can buy that because we have not seen very many herxes at all with new meds. In fact, only one or two out of tons of new meds. And nothing has improved our situation--although back on a low dose of abilify she is better than she was.

 

But I know that she has pandas...she has all of the symptoms (or has had) with the exception if motor tics. And I have seen that direct strep exposure incites debilitating OCD pattern which calmed with Zithromax at the time.

 

I think my daughter had it for so long before we started treating it as pandas....I think it's possible that she is now constantly locked in the inflammation phase. I am waiting for them to finish her lumbar puncture as I write....hoping these tests will show encephilitis or something that could be the reason she's not getting well--and hoping insurance will cover it.

[sf_mom]

Couple of things to consider.

 

Possibly test her C4As to confirm if there isn't an inflammation problem? Consider doing a full Shoemaker panel to confirm there isn't a mold issue. Your LLMD is wonderful but he did miss an obvious yeast infection in my friend and never picked up on it for my children. Yeast/Fungus was a huge issue for us and probably still is. These would be very cost effective labs to run prior to IVIG.