Looking for IVIG Doctors

[nitshel]

For our DS, we are considering IVIG and looking for Doctors who will be willling to prescribe this. We are in the Northern VA area. Any advice/recommendations will be much appreciated.

[PowPow]

We are also in Northern VA-- what about Dr L?

That would be my first thought.

 

both of my daughters had IVIG and many other tx through her.

Edited May 21, 2014 by powpow

[nitshel]

Thanks - we tried Dr. L and did not have a good experience. Any others in the nearlby areas / states? I think there are two aspects to our question (i THINK). The first is a prescription for IVIG - and the second is where to get the actual procedure done. Is my thinking correct? Dr. T and some of the other docs wwe went to can provide the prescription but how do we get the actual procedure done?

 

Thanks for all help!

[SSS]

Coram is one chain of infusion centers across the US.

 

When we did our HD-IVIG's, our treating MD sent the prescription over

(and spoke personally to the center over the phone)

 

It was local, excellent service, dd was able to sleep in her own bed at night.

[PowPow]

we also had Coram for homecare (IVIG and solumedrol). it went well and had good coverage. Dr L was the ordering physician.

 

We used Coram out of Chantilly.

[nitshel]

Thanks powpow and sss! If you dont mind my asking - how much did you end up paying for it - and did Insurance eventually cover any of it?

 

Thanks!

[SSS]

We had Kaiser insurance at the time (HMO, and awful, awful about PANS)

so no, no insurance coverage.

At the time I think dd was around 40 pounds,

1st HD IVIG 2.00 dose over 2 days about $5k total,

2nd HD IVIG 1.50 dose over 2 days about $3.5 total.

[PowPow]

we paid out of pocket for IVIG in office- about $12-13K for 170 lbs..

that was in 2011.

 

all that homecare was covered by insurance. Can you believe it??? covered upfront, too.

 

too bad my child was not cooperative at that time. many home infusions were aborted after a hour or so.

 

what a time that was. I would hate to revisit those days.

Now, when she gets infusions, it is at a hospital infusion center and is no problem at all. there is hope for everyone out there!

[nitshel]

Reviving this thread...What are your collective thoughts on IVIG risks - I've been reading that since it contains blood products from thousands of donors, there is a risk of infections in the IVIG products? How real is that fear?

 

And secondly is there simply no alternative to IVIG? Aside fomr PEX (which seems even more invasive) and immune boosting supplements (not powerful enoough) - is there no otehr option?

[PowPow]

Not that I know of.

 

I am not too concerned about the infection risk, honestly. I trust the processing and also, it is a pool of over 1000 donors per "mix" - so it is such a huge varied lot, with such a relative small amount from one person. In full disclosure, one of my daughter's did have a positive typhus IG test after IVIG! That was a little weird. It was ordered as part of a panel ordered, and we ignored it.

But that is just me. My kids were so sick - I would probably not have blinked at anything, honestly, to try to help them. LIterally, nothing scared me. I am now not as concerned as some might be, between the 2 older girls, we have done more than 15 IVIG's since 2010.

 

Yes, pex is more invasive and though extremely helpful for both my kids, the results were not lasting for more than a few months, though I think it created a environment in their bodies that permitted them to heal. (by removing antibodies for a period of time).

 

I will also say that one of my daughters' (blood type A) did develop hemolytic anemia post IVIG. It is more common in pts with type A or B blood. It is really rare and even at Georgetown hospital they had not really seen many (or anyone?) with it after IVIG. She was ill for a while and took a few weeks to fully recover- but hem/onc at G'town monitored her on an outpatient basis very closely, until she recovered. That would be a risk with IVIG.

 

Have you found a doc to help?

Edited August 22, 2014 by powpow

[Rachel]

My son has had 3 LD IVIG treatments. He has been sick for at least 4 years. He has a Low IgA but not deficient. About 24 hours after the treatment he would run a low grade fever of 100 and break out in a rash. He was treated with tylnol, moltrin, and bendyrl. All this went away in less than 8 hours after it happened. It was a delayed reaction. The first time it happened it did concern me and his doctor. We saw no improvements with the IVIG and my son is now doing plasma exchange treatments.

[Wombat140]

...And secondly is there simply no alternative to IVIG? Aside fomr PEX (which seems even more invasive) and immune boosting supplements (not powerful enoough) - is there no otehr option?

IVIg just simply can't be got here in the UK by all accounts, at least not for something like PANS (there's a shortage of immunoglobulin, so it's reserved for patients with life-threatening conditions), so I'd be glad if any of you could explain what the "immune boosting supplements" might consist of. Worth trying, if we get to that point.

Thanks,

Wombat140

[nitshel]

Hi Wombat 140. If you look up some of my earlier threads you'll see one with the title "Best Immune Boosters".

 

Alternatively, here is a link: http://latitudes.org/forums/index.php?showtopic=21949&hl=

 

From our experience, its unclear how well these work since many of them take a while to take effect and its not clear how one can measure the efficacy of these things (perhaps by measuring IgG /IgM levels?). In any case most people on the forum seem to have used something at some point. I hope this helps. Feel free to add more questions / comments to the "Immune Boosters" thread...

[nitshel]

Thanks for your thoughts powpow. So it looks like your DD was in the hospital for the IVIG? Several posts on the forum allude to IVIG as an out-patient or even as an at-home procedure. What determines this? I'm also not clear on when LD IVIG is chosen versus HD IVIG...??

 

It looks like we may have to go to Dr.L for IVIG prescription - that way insurance will likely cover (shes a neurologist and apparently that is what Ins. companies look for as prescribing entity, rather than LLMD or Alternative medicine).

 

Does anyone know of any other doctors in the DC/ Northern VA area who are child neurologists and are OK prescribing IVIG for kids?

[PowPow]

No. Outpatient at infusion center in hospital.

Dr l has infusions in office now. And we did homecare, too.

 

HD typically is 2mg/kg

Now my daughter gets 1mg/kg. (LD ould be lower than that, though. )