I get my treatments in the hospital. That is the only way my doctor allows them since it is 48 hours straight. She only schedules treatments when she is on call or in her office. This is the first doctor I have ever had that sees patients on Saturday and Sunday.
I will actually go in this Friday and will hopefully only have to have 400mg. That will only take 48 hours and should get out on Sunday. The hospital is 2 hours away, so this helps my husband not have to take off so much.
Geepster said:
It seems that wearing off is par for the course for most of us. Finding a neuro you can communicate your concerns to and yes, your thoughts on the subject, is a far more difficult task but necessary b/c he’s the only one that can add meds, increase Ig doseage, or it’s frequency according to your response and not according some preset doseage “guidelines” which don’t really mean much to those who are suffering premature return of symptoms following IVIg. I hope I can find a neuro and a center that will individualize my treatments and a center that can give me the infusions when I need them not when it’s convenient for them. I needed a booster but they couldn’t get it for three weeks!
I used to get mine 3hr from here but now only 30 min. so I know what a relief it is for the spouse.
If only my doc would answer texts or emails on the weekend, my life would get simpler and better. I am so glad you have found the right doc and the right center for your infusions. What a relief it is!
Your Dr. ( + you & your daughter) needs to realize that this treatment is at least a 50/50 when it comes to treatment and accepting the risks that go with it. Ask your Dr. why she/he can't have her dose or frequency of her Ig increased. Too often patients and guardians are reluctant to do their homework necessary to be an active participant in their own or their family"s care. Just as often, Drs. are used to "barking orders" for others to obey that they don"t take ( or have) the time to ask what you think. Don't leave the office without understanding your daughter's treatment PLAN including the "what ifs":
it doesn't work; it's inadequate; etc. You get the idea. It's not easy but you are your child's only advocate. You'll find that your Dr. is a lot more willing to share the responsibility of decision-making than you would think. Good luck. We all pull for your daughter. Let us know how it goes. PS: when I say these things, I remind myself to do the same for all MY treatment as well.
Catherine H said:
My 14yo daughter struggles to make it to 6 weeks between ivig's and her nurse said she should be having the ivig before symptoms occur. She said to ask the neuro to bring the ivig back to 5 weekly and he has. So we will see how it goes.
Whose stem cells do they use for stem cell transplantation?
stadem06 said:
If IVIG isn't working you could always look into a stem cell transplant with Dr. Burt in Chicago out if Northwestern Memorial Hospital. I had my transplant in March and all of my symptoms are going away, I'm no longer on any medications or treatments and I'm gaining my life back.
Unlemon said
The last time I checked, which was a few years ago, they harvest your stem cells. The procedure is very expensive and I was told that I did not qualify because I would probably not live through the procedure or the 5 years that was required for their research. (It has been over 5 years for me).I would have saved the insurance co a lot of money because I know that my treatment has run over what it would have cost for the stem cell Ethel
An AHSCT , is I think the most common and they use your own stem cells. It is always worth checking on cost and even seeking assistance from the treatment center performing the procedure. They truly know where to find the money!