IVIG opinions requested

[Mayzoo]

My Daughter has consistently had low IGG and IGA with normal to high IGm. Her latest results are:

 

Igg 469 Normal 716-1711

Igg subclass 1 273 Normal 347-993

Igg subclass 2 91 Normal 140-440

Igg subclass 3 12 Normal 23-117

Igg subclass 4 5 Normal 1-83

 

IgA 49 Normal 51-220

IgM 247 Normal 59-220

 

 

We cannot afford to pay cash for IVIG. Her current insurance may approve it, but she just lost her with the election last night. If we are lucky, we may be able to get one dose of IVIG before her insurance is canceled. Without Obamacare, she is labeled as uninsurable. Prior to Obamacare, she was in what was called a risk pool; which was a group comprised of otherwise uninsurable people, but this plan no longer exists. Since this no longer exists, she is now unisurable again.

 

I am preparing her medically for the repeal Obamacare within the next 4-8 months. Starting today, we are adjusting her meds and supps to what we can afford cash outright, this way it is a slow titration off meds and/or different meds rather than an abrupt and all at once stoppage.

 

 

 

My question is with these numbers, would you do an IVIG one time knowing you will not be able to do another one for about 3 years if ever? Could doing just one do more good than harm?

[MomWithOCDSon]

OMG, Mayzoo! I'm so sorry! I don't have any specific IVIG experience or advice to offer, but I just wanted to offer my support in the face of this drastic change in your insurance situation. It stinks, BUT . . . just because he says he's going to repeal Obamacare his first day in office doesn't mean he actually can or will. Are they really just going to throw all of those people off the insurance rolls?!?! How is that in any way politically feasible? At a minimum, you'd think there would have to be a transition period or something, especially as the ACA is supposed to be replaced with something, not altogether chucked. Hang in there!

[Mayzoo]

Thanks for response and the encouragement. For my child's sake, I have to to be more proactive than normal now.

 

Republicans have tried to repeal Obama care in its entirety 6 times since its institution, and and additional 56 votes to repeal parts of it. They did not have an alternative then, they do not have an alternative now. Now that the republicans have the house, senate and presidency--nothing will stop them from repealing it. I expect it to be be repealed within the first 3 months, and either no transistion or at most a 6-12 months transistion. Unfortunately, there is nothing for her to transition to. When I last checked, a minor cannot be on an insurance plan alone. Hubby and I are fine with concept of us not having insurance. We are not fine with her not having it.

 

Having been in the position for years having an uninsurable child, I can assure you the general political view (not just republicans) is every man for themselves. "If you can get insurance, good for you. If you can't, don't whine to me because I have insurance." Amoung other things, our kiddo has Arnold Chiari Malformation and Syringiomylia. Years ago, those put her on the uninsurable list.

 

When we first started the journey with our child being unisurable (roughly 2005), we went to a lawyer for advice. His advice then was we needed to divorce, sell everything we own, buy lottery tickets and keep the receipts to prove we no longer had any money or assets....then we might qualify for help---but we also might not.

 

Regardless my entire focus now is to ensure I have all the plans I can so she is not thrown into a complete medication void overnight. I actually started doing some things a few months ago in anticipation of this outcome. I just must ramp it up exponentially now.

 

I can adapt and aquire her meds on my own. I am not sure about the IVIG if we should even bother starting or would only being able to do one cause more harm than good. I have read so many threads were one was simply not enough and I do not want to do more harm than good. Obviously, no one can tell me for sure, but I am just looking for others experiences with only doing one.

Edited November 9, 2016 by mayzoo

[LNN]

We did one IVIG. It was a negative experience because DS had undiagnosed Lyme and it triggered a long and intense herx, with lots of behavioral issues. But it didn't do any permanent harm. Just lots of inflammation that eventually calmed down with Lyme treatment.

 

Your situation is of course much more complex and I can't give you any insightful advice. One IVIG would presumably boost her immune system and might help her fight those persistent infections - provided your able to manage inflammation and any behavioral consequences in the aftermath. But I'm assuming here you wouldn't be dipping into essential future medical funds to pay any co-pay. If you were looking at any significant out of pocket expenses, I might say you'd be better pursuing the Buhner route. But if the cost isn't the issue, I might do both IVIG and continue the herbs. Buhner's herbal recommendations have also been very helpful here

 

Best of luck - and I hope you do get an insurance reprieve. It's easy to vote to repeal something when you know it won't actually happen. But to have your fingerprints on legislation that will take healthcare coverage away from millions of people who vote - well, that may be a different reality. How things actually play out may be as unpredictable as yesterday was. Hopefully, it will be better than you fear.

[Mayzoo]

Thanks for the replies, support and encouragement.

 

In doing more reasearch it appears ACA has already had large portions approved for repeal by the house and the senate (**BUT** vetoed by the president, so it was negated) in winter of 2015.

 

The good news out of that is that when Congress passed the repeal they had in place a 2 year transition period. There is no telling what they will do this time around, but that does give me a bit more hope that we can hopefully get in a few rounds of IVIG before she becomes unisurable again.

 

 

http://healthaffairs.org/blog/2015/12/04/senate-approves-reconciliation-bill-repealing-large-portions-of-aca/

Edited November 12, 2016 by mayzoo