Friday, October 26, 2012

New thing

I feel like I shouldn't have posted what I did on the MRI regarding the "new thing" - I was just too lazy and tired to write more and I don't know enough about it.

It's not new to the medical community nor is it some life changing thing for mito kids. It's just SubQ IVG.

Now for those of you without special kids now know why I was lazy, for those with mito kids it's nothing earth shattering.

Will's mito and immunologist doctor have a theory, if you will, that doing SubQIVG for Will is going to help with a few things. 1) IVG has been shown to reduce brain inflammation and swelling. Maybe that will help the four lesions on his brain. 2) IVG will help keep Will healthier and less sick which will in theory, keep him from being hospitalized or weak.

So what the heck is SubQ IVG?

SubQ - subcutaneous injection is administered as a bolus subcutis, the layer of skin directly below the dermis and epidermis, collectively referred to as the cutis. - or fatty tissue. Subcutaneous injections are highly effective in administering vaccines and medications such as insulin, morphine, diacetylmorphine and goserelin. Here is a "how to give" from the NIH.

IVG - Intravenous immunoglobulin (IVIG) is a blood product. It contains the pooled, polyvalent, IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months. It is mainly used as treatment in three major categories:
Until somewhat recently, IVG fluids have been administered through an IV, not SubQ so essentially you have to be in a hospital or in-patient setting. Now, with SubQ, we can do this at home.

I haven't had the training yet, nor have we started this. I don't even have the appointment time confirmed. Hence why I wasn't really talking much about it, all I know is what I can google and learn from other families who are currently using this.

So, this info could all change, but what I think I know is...
-Weekly infusions
-Takes about an hour
-You have to insert a butterfly needle into the fatty tissue, tape it down and wait for the IVG to infuse into his system.
-Yes, there are a variety of side effects, most of which sound pretty crummy. But, we've decided the good outweigh the bad. Plus, most others I've talked to (4 other families using it) have had fairly mild issues that go away quickly.
-I'm thankful we were able to get insurance to approve this, otherwise the cost would likely have been prohibitive.

So, I don't know much right now, other than the theory is it will hopefully help our buddy.

Whenever we get this started, I plan on amassing an intense video / movie collection and am hopeful that I don't screw it up.

In other news, we finally got a cold snap. Not as cold as his first snow in 2009, but hopefully we're heading that way.


  1. So exciting just to have something that will keep Will healthier! Praying it's a huge blessing to you guys. So good to see you last night!

  2. the movie fairy just might have visited Will's box at school ;) big hugs!

  3. I forgot how cute the little guy was! Brings a smile to my face!

  4. Lori, thanks for taking the time to explain Will's latest option for treatment. We'll be praying for you. And I firmly believe that your work as an ambassador for mito will not only help Will but will ultimately help countless others. You are amazing! Finally, that picture of Will is priceless - the look on his face!

    Here's to a cozy weekend for your family:)

  5. I hope it is a great therapy for Will!

    And I'm sure hoping for snow this winter, too!

  6. I'll be praying all goes well with IVG and you see great results for Will!!