Please pray for Kevin

My prayers are always with you guys and I hope it all works out for the best for you. Keep pushing for what is best for Kevin I always had to fight for Kendal too so I know how frustrating it is and I know that it is hard but you know better than the doctor about your son and that is a fact they tend to overlook alot so sometimes you have to push them into your way of thinking then their numbers game they like to play. Good luck and again our prayers are with you.

Hello Dawn,

“Medically necessary” is, I suspect, a tricky definition. This link, [URL/]http://pns.ucsd.edu/Guidelines_CIDP.pdf[/URL], is the best consensus on treating CIDP. If your doctor disagrees, make sure you understand why. If the insurance company disagrees, you have the information necessary to challenge them. The fourth page points out that the use of immunosuppressants does not have particularly good evidence.

My personal experience with CellCept was that it did not work. I am sure it works for some, but not for me. I am one of those people who need a combination therapy. As my immunosuppressant, I use azathioprine. We have yet to decide if it really works (I am using it to help me reduce the amount of prednisone, but I am still tapering down from very high doses), but we will know in another six months.

As much as we would all like for cost not to be a consideration, it is. My guess is that your BCBS policy has a $2 million dollar cap. With the cost of IVIg, you will probably run into the cap before Kevin finishes college. Perhaps your neurologist is trying to find a less expensive way to treat Kevin. CellCept is not cheap, about $7 per 500 mg tablet, but it is much cheaper than IVIg. Of the immunosuppressants, it is considered to have the least severe side effects.

The long-term worst side effect of all the immunosuppressants is that they can cause cancer. Not that they do in all cases; I think for azathioprine, it is about 3%. It was relatively easy for me to decide to use an immunosuppressant: my expected lifespan and the latency period are about the same, within 10 years. Because Kevin is so young, I would think twice about starting an immunosuppressant. I am not sure that I wouldn’t, even in his case, but I would investigate (the dreaded) corticosteroids first.

The side effects from steroids can be nasty, but with care and vigilence, I think they can be minimized. There are a few protocols for adminstering them, with differing levels of side effects. PamH reported on Dr. Parry’s protocol. I am using a modified form of it and it seems OK. Have your neurologist e-mail Dr. Parry for details. I know that he will repsond, because he did in my case. PM if you want more details and discuss it in detail with your neurologist.

All this said, I hope you can keep Kevin on IVIg exclusively. Godspeed in your search for the best answer for him.

MarkEns

My prayers will continue for you and your family that Kevin will get the help he need and that you will have strength and courage to keep up the fight.

Jim C

Good luck, Dawn! I hope everything goes the way you want!

Love,

Shannon

What a nightmare?
What I suggest that you do is ‘web up’ your insurance plans’ appeal policies and procedures….It’s tricky and sticky stuff all in all. And I for one get a cold spell all over my body when reading it all…
Do you trust your docs? At times good docs, who have and have staff who are familiar with all the in’s and out’s can do far, far better than you can….I truly hope this is the case here. I will be watching and hoping and lots more for the best possible outcome…
Please take some of my positive ‘cyber energies’ to give you the GO to get it all done!

I truly hope things are going to be a GO!

Dawn what happeining with Kevin and the ivig?