Not the news we wanted to hear.

Well that is disappointing Dawn. Good to know what happened as my husband is going to be weaned down from 120 G. every 3 weeks. He was supposed to start the weaning a month ago, but the communication between neuro. and GP seems to be breaking down. I am saving your post for future reference. Thanks for the good info. Take care and I’m sorry that Kevin has to go through this.
Laurel

Dawn, so sorry to hear the news but please know I’m praying for you both, never did stop, never will.

Dawn,
Yes that news is a bit of a set back…

what you need to do is have a big family hug!

You are strong and you will get over this little speed bump.

hugs to you, Kevie and your family

Rhonda from Canada

You knew and being the perceptive Mom that you are you found two great doctors.
The disappointment is hard, but Kevie has every chance in the world to get better now. I am saying special prayers for a full recovery.

I am sorry Dawn and Kevin. I was so hoping Kevin could reduce his treatments and still be doing well. I know how disappointed you both must be, trust me I understand. As you say though, at least Kevin does respond to Ig so that in itself is something to be grateful for.

The only thing I can offer to compensate for that disappointment is to say that being on sub-q FEELS like being in remission most of the time. Aside from the 3x/week pin pricks I rarely think about my CIDP anymore as I don’t have such ups and downs to make it obvious. It’s become more of an invisible disease – which, if I cannot get rid of it becomes an attractive alternative. That is not to say I don’t still have damage, but I have become very accustomed to compensating for those things by wearing AFOs, etc. etc.

Once Kevin bounces back from this little dip you might want to at least call up CSL Behring and talk to them about it. It may be that he is not a good candidate and that would be something you’d want to know before offering up this option to Kevin. One thing that might be good for Kevin is to help do the treatments – I get a sense of empowerment by being the one to tackle my own disease, each time I jab my legs I think to myself “I am in control here – not you Captain CIDP” or something equally as comic-book stupid. There is a lot to be said about your mental state of mind and mine improved when I started sub-q primarily because I felt like I had some control over what was happening to my body, no longer a victim but a collaborator.

I am very sorry reducing his dosage did not work. I think about Kevin, Emily and Kazza frequently as we have the most similar symptoms. I think my doctor was a little surprised when I told him that I knew several other people with my similar set of symptoms… one in Australia. 🙂

And don’t give up hope either – many things can change between now and when Kevin is an adult that may make a better opportunity to try reducing the dosage again. It’s a hard time for you all as there are other chemical changes happening with Kevin that may complicate the issue – they should be separate issues (growing up and having CIDP) but rarely does anything happen in your body in isolation.

Julie

[FONT=”Microsoft Sans Serif”]dear dawn,
hang in there– you tried a decrease and that was smart. now you’ve learned, unfortunately, that a higher dose is still needed. he’ll be strong again, and so will you! i send my strongest positive thoughts to you both!

hugs,
alice[/FONT]

Dawn,

Sorry to hear about the set back, Kevie’s sadness, and that he’s not in remission. The needles, EMG, meds, … they all [B][U]stink [/U][/B]especially for a youngster. I don’t know if you even realized it, but in your initial post you are counting your blessings; quite amazing considering the circumstances. I see a peace, courage, determination and strength in you that seem to be “passing all understanding”. Hmmm, maybe coming from the Holy Spirit? 😉

I pray He will continue to strengthen you, give you wisdom, strength, courage, peace, and a determination to carry Kevie’s burdens through this. That Kevie will regain his strength, neuro, quickly and will ultimately be healed on this earth.

Gary

Dawn,

Sorry about the disappointing news, you, Kev and your family remain, as always, in my prayers. With good friends and an understanding school kids can put up with a lot and still come out smiling. At least that was our experience with our youngest, Patty. [not CIDP, but born deaf – now working on her PhD and teaching in Atlanta – not bragging, just letting you know that there plenty of reasons to be encouraged about Kev’s future. -OK, maybe just a little bragging:rolleyes: ]

Dawn –
When I joined this forum, and family just a couple of months ago you welcomed me and made me feel like this was more than just a forum for information – it was a group of people who support and help each other through hard times. I so appreciate your strength and support. You and Kev are in my prayers. I am so new to this whole thing, and a GBSer, so I don’t really understand all that is going on – but I am a Mom, and I know that watching our children hurt is the worst thing in the world. My Mom sat with me, and heard bad news too many times but somehow we all got through it, I grew up, got better and now look at me. Almost 60, teaching, loving grandparenthood – and learning how to deal with this new gift – GBS. My Mom came and sat with me in the hospital, fed me birthday cake, and hugged me. It was what she could do. It is what all us moms do best – just keep on loving our kids. You have so impressed me with your love, your quest for knowledge, and your strength. You are a wonderful Mom – and know I send you hugs!

Hello Dawn, It has been quite a while since i have been on the forums. I got on today to see how you and Kevin are doing. It sounds like you are still fighting. Im sorry about the news. You and Kevin sure deserve a break for as much as you do to help everyone who comes to this site! It has been almost a year now since Brayden started showing symptoms…I cant believe it! For the last few months he has been getting 40g ivig every 3 wks. His neuro told us at the last visit that we just need to get used to the idea of Brayden having this… and you know i thought of you because i believe you feel the same way i do which is, i dont want to just sit back and tell my 9 yr old son “well you just have to get used to this because this is how it is going to be”. Thank you for inspiring the FIGHT!! Hang in there.

Dawn,

You are such an amazing mother and I am so sorry to hear about the little setback, but I know that you and Kev will get through it!! I think Jim is right, kids with “disabilities” can go on to do great things and become better people because of it, and mostly because of their parents. Stay strong and come on here to vent as much as you want. You have helped so many of us, that it is our turn to help you! 🙂

My heart & prayers go out to you, Kevie & your family. Is Kevie a canidate for Stem Cell Transplant? I will continue praying for you all.

So sorry for Kevie. This is a lot for a boy his age to have to deal with. And being a mother and grandmother, my heart aches for you. There is nothing more agonizing than watching your child suffer. Kevie is very fortunate to have such a devoted and caring Mom. God Bless

You are so right to come here and vent, like you said there is friends here who do understand. As I told you before Dawn…you just have too be a really special Mom !!! I hope you and Kevie are having a good time planning your vacation, and you both surely deserve it. I think of you and Kevie alot, even tho I don’t post alot to let you know. I know…I bad…I should post more to tell you and other friends on here that I am with them, “for the long run”. Well, I gotta get off here and get ready for the bed…it is almost 3 AM here at my house.
Dawn, love and prayers and a great big HUG for you and Kevie. Dawn, you be sure and pass my big hug on to Kevie now. 🙂

Drummer

Dawn and Kev,
I am sending you positive thoughts and hope you know what a difference you both make in this world. Our “disabilities” are our best assets in life. You will see this more and more. I have always used my childhood challenges with Diabetes and now CIDP as a way to understand others better and I hope I have done a good job. I know you and Kev have served others so well and will continue to.
All my best,
Linda