i am so sorry to hear about your struggles. i have seen your posts on here before and i always thought…good God i can’t imagine my child having this disease it’s just pure evil.
keep your faith up and try to find…even if it’s small, one thing to smile or giggle about.
believe me, i have had my moments but my sisters would just remind me that if we didn’t laugh we surely would cry forever.
i would be concerned about long term effects for a child. that’s an excellent question. i just wonder that if there is a cure then why are we all just struggling with this?
So sorry to hear about all the burdens you bear. Know that we “your GBS/CIDP family” are all here for you & praying for you & your family. Don’t feel bad about putting your father in NH, you care about him, that’s why you allow others to care for him. When my Dad died we had to put Mom in the NH, she has ahlzimers. My Grandmother had it too and had to go to the NH. When people don’t eat, they are not hungry, not in pain from hunger. That saying “God will not put more on you than you can handle” that’s not in the Bible. It says “Never will I leave you, nor will I forsake you”. I think you are Superwoman, you are carrying the whole world on your shoulders. Go ahead and take the prozac, it will make it easier. That’s what it’s for. My heart and prayers go out to you, and your family.
Love & hugs, smitty
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. 🙂
sounds great, i could use a friend there!
also, keep your ears open for a possible sublet should i end up being accepted in the trial. i have been scanning craigslist– but until i know exactly when i am coming, i can’t arrange anything…
but yes, i’d love to meet you dawn.
my email is: [email]email@example.com[/email]
please feel free to be in touch– i love reading your posts- you know so much more than i.
i would be very interested in the handouts to which you referred. i do not, however, have a fax machine handy. is there a way to scan and email them? if its a lot and way to much work, don’t bother– i know you have your hands full.
also, can you tell me more about those who took cytoxan but whose symptoms returned in 2 years… can you say more about that?
thank you for your time,
Congratulations to both of you. I am sure that the cargiver has done everything possible and that kev is so much better. We are all proud of you. Do not be afraid to show your enthusiam . It makes me look forward to the day that my husband can get better. I do know how excited you are and I am very happy for your family.
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]www.gamunex.com/patient-stories.cfm[/url] or [url]www.bizjournals.com/triangle/stories/2008/05/05/daily41.htm[/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
I’m sorry that Kevin has such a hard time, with somethings he need to keep him going. Dawn there is one thing I know about you, and that Is if there is a answer out there you will find it. I also get the headaches but not the vomiting (THANK THE LORD) I have found that ice packs do work really good as someone else mentioned. I also find that laying down and keeping quiet helps.
Don’t you dare feel guilty about make a wish! He deserves it and so do the rest of your family. I wish there was an Adult Make a Wish, because this disease also takes a toll on my children and husband and I know they would enjoy something special too. So go for it and have fun.
P.S WE LOVE YOU AND KEVEN ON THIS FORUM! WE ARE YOUR FAMILY TOO AND WE WILL ALWAYS INQUIRE ABOUT KEVIN.
So sorry to hear Kevin got sick. This junk is bad enough on an adult. Can’t imagine it as a child.
Would a reducded pack of Prednisone work a few days prior to treatment and Solu-Medrol after treatment ?
I hope he is feeling better by now and hugs to you. Hang in there, it is not easy be a caregiver.