Best Mother’s Day present ever, I think, hope!

    • May 10, 2008 at 10:26 pm

      sorry no info

    • Anonymous
      May 10, 2008 at 10:54 pm

      Dawn, My fingers are crossed!!! Kevie is Always in My Prayers and Thoughts!!!:) Stay Strong Kevie! Big Hugs!!:cool:

    • Anonymous
      May 10, 2008 at 11:12 pm

      Wow, that is so great…I will hope it stays that way:)!!!

    • Anonymous
      May 11, 2008 at 2:15 am

      Hooray! It’s such a relief to not have your cure be so painful! So far so good for me too, no meningitis so far so I’m ultra-hopeful it was just those batches. Whew! Tell Kevin I understand the relief!


    • Anonymous
      May 11, 2008 at 5:07 pm

      [B][I][FONT=Palatino Linotype][SIZE=4][COLOR=darkorchid]Wishing Kevie the very best Remember I’m Pulling For You ![/COLOR][/SIZE][/FONT][/I][/B]
      [FONT=Palatino Linotype][SIZE=6][COLOR=red][I]Oh & for all the moms here, Wishing You a Very Happy Mothers Day. Hope You Had a Very Special Day ![/I][/COLOR][/SIZE][/FONT]

    • Anonymous
      May 11, 2008 at 7:58 pm

      [FONT=Comic Sans MS][SIZE=3][COLOR=Purple]Dawn and Kevin,
      So glad you are having better luck with the treatment. Enjoy the good feeling.You deserve it. Happy Mothers day Dawn.

    • Anonymous
      May 12, 2008 at 3:05 am

      Dawn and Kevin,

      From what I have read on these posts, I think that all the “positive reinforcement responses” is all you need to counteract your “jinx”. 🙂 🙂

      I know that you had a great Mother’s Day, and it sounds as if Kevin is progressing to the next improvement in his ordeal.

      God bless you all,


    • May 12, 2008 at 9:29 am

      Kevie is home from school, guess you know what that means. The headache started last night. I am not going to post prematureley anymore, it just makes me upset when we are let down.

    • Anonymous
      May 12, 2008 at 11:01 am

      Please, the two of you, do not be too discouraged. You can also look at this in that you have, by changing what you do with the IV IgG, made a difference in the timing and severity of the headaches. It is still a work in progress to make headaches not happen, but it does sound like it is better (not as long and last time not as severe, right?). Since you can impact the headaches, there is still hope that they could be kept away.

    • May 12, 2008 at 3:39 pm

      You are right! I do think about how far we have come, I give Kevin the positive uplifting speach about how he has not puked for the last two months and how the headaches are more manageable and mostly, i remind him of how strong he is physically now. He is running really fast now and his strides are very long now.
      I just get a little whinny when I see him in pain crying and all I can do is rub his neck and tickle his back. It’s just me being kind of selfish considering. Maybe I ought to give myself a pep talk before Kevie!

      With Hope, do you have any other suggestions as to how we can tweak it? Do you think it is going to become an issue down the rode that he consumes so much tylenol and aleve? We go for seven days straight currently.

    • Anonymous
      May 12, 2008 at 7:09 pm

      Dear Dawn.
      I have been reading about Kevin and the deep love you have for him.He is very fortuant to have a mother as you and the other moms here and the love you all share for your children and also for others.
      I have yet to see anyone being neg or angery with another.I have felt it would be so nice if the rest of this country or even world could be filled with love and compassion the people here share.
      I see Kevin and you as fighters and you both carry so much faith. I start my day with faith and end it with faith.If I see myself carrying anger then I let it go and say a prayer for the person.We all have seen doctors that really do not care or care enough to want to find the answer to a sickness.But have we seen how we always are guided to someone that does care and someone that carrys the answer.
      I know for myself I look for the little changes and the small blessings and over time they all added together become a big blessing.I never see anything as luck but see them as blessings. also we learn from others and this goes from one to another.
      I see there is a reason Kevin had a head ache and it could have been a normal head ache.I look for the reason why but I always remember I have someone to turn it over too. to let it go completley and give thanks for what I have and for all the gifts that have been given to me.
      Dawn you and all the mothers are the strength and warmpth and love for the children.They want to be well as well as you want them to be. They try because they want you and others to be proud of them.I need to remember I am doing the best I can and look at how far I have come. Look at where I was and now where I am and who knows where I may be tomorrow. I try to see things through the eyes of the child and the eyes of the parents.
      There is 1 sad point I cannot seem to find an answer too. Why is it that over 80% of the ones giveing all and shareing with others is mothers and relatives. Where are the fathers??
      Dawn my prayers and thoughts are with you and Kevin and all the mothers with their children. Remember you all are blessed in so many ways where so many others are not. May the Great `Spirits love and healing blessings be with you all and your calminess flows to others.
      Your friend (Steve)

    • May 12, 2008 at 8:17 pm

      Hi Steve,
      Thank you for the uplifting words. Regarding Kevin’s father. When we first met each other (27 years ago at age 15) we were best friends for a long time and were married at age 24. He is different then he was. Compassion and stregnth is what drew me to him, but I fear his need to overprovide for us if you will has taken him in another direction. He needs to control things and if he cannot, he is uninvolved or uninterested and some times mean. He cares imenseley, but I think medical issues in general are not hard wired into his brain. He is very intelligent in an engineering, mathimatical, physics sort of way. He would have no clue about medical stuff. He sees me on the computer, I guess he just leaves it up to me. When I try to explain things he just does not get the seriousness of it, denial I think.
      I just try to deal with things and look for support here from people who have the illness understand. Maybe God had a feeling women would be more nurturing with the exception of the dads here who have been able to assume both roles? What do I know?
      Again, thanks for the encouraging words of faith. Just curious if you don’t mind, what is your occupation? You would be good as a counselor or youth minister.
      Dawn Kevies mom

    • Anonymous
      May 13, 2008 at 9:53 am

      Good morning Dawn.
      Thank you for your kind words. I am just a normal person. I retired from one of the top 20 hospitals.I was an engineer. About 20 yrs ago I was lost spirtually and not happy with what I was hearing from orgnized religon. I met someone that was spirtual and her beliefs were of the native americans.We talked for several years and I could accept what she was talking about. She never once told me I had to do this or that and she talked of self. I learned of the real Steve and his inner child. I learned never to judge another for their spirtual beliefs as long as it worked for them.
      She said she always looked for the good in everyone.that we all had inner beauty and that what we saw on the surface was not of the inner spirt we all have.
      I have seen prayers answered before my eyes and for others.When I got GBS I went almost 2 months before I saw a nerulogist. and she was the top in GBS in this area. I only had numbness in my legs and was walking again in 4 months. Yes mine was mild but there was a reason. My doctor has used me to talk to others with GBS and the Great Spirit has and uses me to give and help others. I am nothing but am open for the Great Spirit to use me.
      I wake with faith and go to sleep with faith. It is with me every day. Hardley a day goes by that I do not see the little blessings I receive or for others.
      As you have read in July 07 I had a triple bi-pass. I was not scared and looked at this as a new adventure in life.My gifts from the surgery was 1-I had one of the top 10 heart surgons and I haven’t smoked in almost 10 months and the desire is gone. I feel 30 yrs younger.and all of this were blessings. Again I am being used by the Great Spirit to give to others.
      Dawn I do not want nor look for attention for myself. I have been blessed and it makes me very humble. I do love to help and give to others. and have been blessed as a messanger. I pray for all of us suffering and strength for everyone. I feel your fears from time to time and from others and I turn you over to the great healer. And reading your reply about your husband I see he is doing the best he knows how under the situation. and I have asked for belssings for him. Dawn may you days be filled with love, calminess,peace and remember you are blessed with a loveing beautiful child. Spirtual friendship—(Steve)

    • Anonymous
      May 13, 2008 at 10:32 am

      Dawn always remember the little steps that get you to where you want to be and Kevin is going longer and longer before the headaches and they are slowing. I know how overwhelming it can be doing it alone in a way and now with my CIDP my husband with whom I have only been married a little over 3 years is kind of like your husband. He thinks he needs to fix everything on top of that he comes from a very stubborn German farming/ranching family and has had a really hard time with this and if it wasn’t for the fact that he has to take me everywhere I don’t think he would have anything to do with the doctors and stuff like that. Sometimes that is just how they are wired and they do not know how to handle it so they do what they can and that is usually work and take care of the money part. I am glad to hear that Kevin is doing better with the headaches and as always my thoughts and prayers are with you and your family. Just take a deep breath and know that this will get better in time.

    • Anonymous
      May 13, 2008 at 8:12 pm

      I do know and share your feelings. You have helped me greatly so now maybe I can reinforce to you that what most are saying is true, maybe not for all men but I do believe men have a harder time facing and dealing with these things.

      As my husband goes thru with the effects of his cidp we have had many ups and downs but I am the one who gets on this site to educate him. His moral is not the best and sometimes he seems to not want to take part in anything and yes mean. A neighbor reminded me that they pick on the ones closest to them.
      Sometimes I also just feel like I am not doing enough but I know I am. Exceptance is hard on a man not that it isn’t hard on the caregiver.

      I just read something from my son and thought it was a new form of treatment for cidp and I took it to his infusion today of ivig. Well it is just another kind of or brand of what another company was using for ivig. Called Gamunex, this was only used for a disease known as ITP. and another called PI (x-linked Primary Immune deficiency disease.) originally but they did not have anything for cidp.

      The company is called Talecris Biotherapeutics. They never had anything for cidp before until now. So It is really just another brand. Now my question is are your happy with what Kevin is getting. I remembered you said to me that Gamaguard was the easiest one to take and that is what I asked for and my husband does ok with it so far. Go to [url][/url] or [url][/url] or just google the company name if any one out there is interested.

      I am very happy with the infectious disease doctor and the girls who do the infusion(much better than neurologist) and they actually gave me information on what he was getting and how much. Could not get that out of the nurses at the hospital and the neurologist said he does not decide what to use, he leaves it up to the hospital. He is getting 900ml in one day and a repeat on day 2 all as an outpatient. And ……MEDICARE APPROVED IT…yES!!!!!

      Neurologist office said they never get approval up front but wait until denial and then write a letter. At least someone knows how to do this right.

      Cheer up please and maybe things will continue to improve. Be glad you have a caring doctor that you can talk to and of course us to vent.

      Thanks for your help

    • May 14, 2008 at 10:05 am

      Hi Joan,
      Just a little fyi, Gammunex is more expensive than gammaguard and sometimes more difficult to attain therefore neccesitating one to continuously switch brands. That is why I did not use them plus Kevie does well on gammaguard. IF you did have reaction issues w/gammaguard and needed to switch to gammunex, they as well as gammaguard have programs you can sign up for to insure you always will get ivig if there is a shortage. A certain amount is put asside for those enrolled in the program. they also have another program that aids one if insurance should run out. Too long to explain, try giving them a call.
      Basically they are all the same, just different detergents or in some instances, sucrose based. Gammunex and gammaguard both use the same detergent, glycine, so they are pretty much apples to apples. Glad your husbands treatments are going well.

      Dawn Kevies mom