Erin, I am thrilled to hear that you are healing. It gives people hope to learn of your experience.

I am happy for you, WendyLouise. You are a good person. Congratulations!

I’m glad to know your first treatment went so well. I was going to e-mail to see how you were doing. Mine went pretty good, I did have some minimal improvement walking briefly which is not a lot but encouraging nontheless. I did get the flu-like symptoms for a couple of days but I expected them. I use a walker most of the time now when I go into stores with my wife, other wise I use a cane. I was resistant to the walker at first but using the cane takes a lot more out of me when I’m on my feet for more than a few minutes. I go back for two days on Monday and Tuesday April 18th and 19. Have a great day!

We’re all thrilled. Hope is a powerful drug.

Thanks, Alice!! Depending on interest I will start a thread for everyone to follow and hopefully put there input in as to what types of questions they would be like to have on the survey.

Tom,

I am glad to hear you are back to work! Are you still running? I just ran 8 miles Monday of this week in 1:43:16. That is a long time but great for me as I try to pound myself back into shape.

How are you doing?

Jaymes

Reading Linda’s post brought tears to my eyes. I have had like one boss like that in my life and she was few and far between. If only there were more like you. God bless you for having a great heart.

We are all so happy for Kevie and you that this infusion gave no terrible headaches, fever/chills, etc. That is geat.
i have two tiny suggestions. First, I think Kevie is still getting the infusions over five days???? and this is hard for school and that is part of the reason that you want to decrease to one day every two weeks. My tiny concern with this is that it is changing dose and schedule both on something that is working and FINALLY is being tolerated okay. My guess is that, in the long run, it might help everyone, especially Kevie to have this go well for a few months and since it is coming up summer, so maybe think about not changing something else for another couple of months–let it go well and him get his “fight” back. Then try another change. This will still be done before the next school year. It is just if you change something else soon and he does not feel as well, it will harder to know if there was a difference in brands or doses or schedules. And, yes, all immunoglobulins “should” be the same, but in reality, they aren’t–you just saw that regarding reactions and people report differences regarding effectiveness.

Second, if you do try one day every two weeks, make sure that the first smaller dose is two weeks after the previous full monthly dose so that the new equilibrium in Kevie’s body is achieved by coming down rather than starting low and building up. the latter would happen if the smaller, more frequent doses were started a month later.

I should not write in the middle of the night. I probably am not making sense!!
WithHope for a cure of these diseases

Hi Bill,

Wow, that is great! I am glad to know both you are helped by it and also that your age responds well. thanks for sharing that.–tim–

Congratulations. That is awesome. I love the shoe picture, but then I love almost anything about kids.
WithHope

🙂 Linda. what did you find out at the Dr. If you posted it I missed it. I told ya’ll the other day I have a hard time remembering which sites I npost on:o It’s the drugs:eek:
I am so glad to hear about your hands getting better. See time heals all. Hardest thing to remember!

Great for you. Your on-line family is very proud of you and thanks you for the honor of your good wishes as you persevered! Keep going strong and let us know! it is great to hear good news.
WithHope

Like I said on another chain. Good job VMAC!:cool:

Liz, this is great. Stories like yours give me hope that there is a turn-around possible. It seems I made some progress lately. Last week I was able with my rollator to walk 2/3 of a mile around Bear Lake in the Rocky Mountain National Park, some of it even a bit uphill. I have not been able to do this for perhaps over a year. My calves are still sore today, though, and walking is more difficult right now. Wednesday I’ll start another round of IVIG.

Our daughter and son-in-law dropped off Sydney (now 15 mo.) last night at our house in Ft. Collins for a couple of days. She has to work at the hospital and he wants to finish up building a porch for a customer.

Here is a picture of Sydney this morning with an applause for you … and me 😀