Not the news we wanted to hear.
April 15, 2010 at 6:24 pm
Well, Kevies ncv/emg is no longer normal. We have weaned from 140g to 30g monthly. Kev has complained that it is harder to do things and he has had increased pain. Well the ncv confirmed it. Some of the nerves were still in the normal range, but others not. He is just under normal. The doc said we have caught it in time. I have not spoke to our neuro, but the administering neuro and our neuro did speak and they regularly confer with each other. THe recomendation of the administering neuro was a load ot two and then get back to where we were when it was normal last year. I think that threshold is about 60g, which is pretty much a maint. dose. I guess it could be worse, at least we do have a medicine that works. Honestly, I really did not think he was in remission, so although I am sad and disappointed, I have learned to deal with the cards and take it with a grain of salt. At least we will have the loads done and overwith before summer vacation and he can spend it doctor free. Sorry for whinning, just easier to come here and vent where people get it. Honestly I am being kind of bitchy, I really do have a large group of people that understand and are compassionate. Ouir school is so great and understanding. Kevs friends are so kind and understanding. I can’t hope for much more than that!! Our docs are kind and cooperative and compassionate beyond belief. We are fortunate on so many fronts, I am just feeling sorry for Kevin and myself. I will get over it!! Thanks for listening
AnonymousApril 15, 2010 at 7:40 pm
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.
April 15, 2010 at 11:49 pm
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.
AnonymousApril 16, 2010 at 5:10 am
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.
AnonymousApril 16, 2010 at 8:53 am
[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!
April 16, 2010 at 9:05 am
Thanks guys! Kev is sleeping, I am going to let him skip school, he is sore and sad. They did quite a few needles this time. His left leg is especially sore. I think the sadness of having to do a couple of loading doses is what really is bothering him. I really did feel it in my gut that we were not in a relapse. I am going to push for ldn to be added too. I was up late last night and it seems to be helpful with symptoms and fatigue. I can’t yet pinpoint if it has any modulating capabilities or how it functions. It is not like it is adding an abundance of antibodies like ivig, it is not a suppressant, and I cannot find anything that says it increases t-cell production, but it seems to work for MANY auto imune issues, from chrohns to uc, lupus,ms,uc and fibromyalgia. I did find somethin in German that talked about cidp and ldn spcifically, but I don’t know German, maybe I’ll see if Norb can help. I just don’t feel like looking for it againand figuring out how to get it to Norb.
April 16, 2010 at 10:35 am
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.
AnonymousApril 16, 2010 at 11:10 am
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: ]
April 16, 2010 at 11:33 am
You brag away Jim that is an amazing accomplishment even w/out a disability such as being hearing impaired. So you brag away you proud papa!! Thanks for the kind words.!
AnonymousApril 17, 2010 at 1:45 am
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!
AnonymousApril 18, 2010 at 4:34 pm
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.
AnonymousApril 19, 2010 at 1:28 pm
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! 🙂
April 19, 2010 at 5:01 pm
Thanks for the nice words guys. I am gpoing to try to be positive. I am awaiting the neuro to see how many loads and when and how much we will wean till we get back to 70. I believe that is our holding point.
AnonymousMay 12, 2010 at 11:59 pm
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
AnonymousMay 13, 2010 at 2:53 am
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. 🙂
AnonymousMay 17, 2010 at 10:31 am
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,
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