HELP, friend with GBS

Shirley,

I don’t know what advice I can give, except what they treated me with. I received 7 loads of IVIg. The last two I’ve been told were of no significant value. Getting only one dose does not sound consistant with what I’ve read people who post here get.

I’ll be praying for your friend.

Shirley,
That seems fairly unreasonable actually. Most of the time you can tell if the IVIg is going to work within a few days and if it does then you don’t want to wait 4 months to get more into your system as it only lasts a max of 40(ish) days. Sometimes it does take more than one session to see an appreciable difference therefore doing it every four months seems like they are leaving her a long time to go downhill in between. And if it’s the expense of the IVIg that they are concerned about then why don’t they give her some steroids or immune suppressants in the meantime? Makes no sense to me. I feel for her, I can’t imagine going through this alone. I hope at some point she can get access to the internet and come join us. Tell her we will welcome her and support her if she can manage it.

Julie

Wow, Shirley what a mess! I feel so badly for your friend. I honestly can’t think of any med to help her mentally-there are too many strikes against. All you can do is be a good listener and support her.
Have a question-has your friend applied for state assistance or disability? I’m sure the social worker at the nursing home is helping her. That bill will be enormous and then you add the cost of the ivig. Too bad the two docs aren’t working better together-the regular doc is totally and legally resposible for her while she is in the nursing home, as he is likely the medical director, but on the otherhand, the neuro has the PP and ivig expertise. Did your friend get any improvement in her legs with the first ivig and pp? She, I think, needs a loading dose of ivig and then maintenance thereafter with the frequency keeping her level-the degeneration in her legs will get worse, and physical therapy is pretty limited for her-she has been in the nursing home long enough that she likely is considered a “basic” level, which means basic care, but the ivig,pp, IV needs should make her a “skilled” level. In that case, she would also get physical therapy.
I hope I have helped you Shirley–sooo many issues with your friend, she must feel so very overwhelmed and totally helpless that she has lost everything and can’t do anything about it.
If there is anything I can do, please let me know. Is there a way she could get a notebook so she could talk to all of us?

All my best to you both, Emma

PS Julie and I were writing at the same time. Hollar if you need anything.

Shirley, I can only advise you from a CIDP standpoint, sorry, but I can answer a couple of questions.
I got 60mg Prednisone a day, Neurontin for the nerve pain, Imuran 50mg. twice a day(immunosuppressant) and then did get the ivig, so yes, you can have them all at the same time. The steroids hopefully would give your friend quicker results, and it is cheap. The ivig is what is so expensive, but is what helps me the best. The dose would be based on her weight and usually given over a four-five day period and then based on her symptoms the ivig would be given every few weeks(we all respond differently-so some get a dose every week, I get 2 days of ivig every two weeks and some get it less frequent).
The therapy she is getting seems a bit excessive, and what is even worse is that the therapists don’t understand GBS. Can you enlighten them to perhaps how you got it.
The social worker should be having a family conference somehow to formulate a plan of care and be working on Medicaid, or state aid, to help her with the medical bills.
At this rate, she will be in the nursing home forever, what a depressing thought. And as I read all your posts, GBS recovers in a couple years to hopefully you get back nearly 100% and can return to work, etc. Maybe that is the best scenerio, but your friend needs positive encouragement that she will recover, get back to work, and get her kids back! A wonderful goal to shoot for anyway.
Good luck Shirley. Take good care of yourself too.

Emma

Shirley,
Has someone contacted the liasion for her area. Depending on where she is, I may actually be her liaison. You can send me a PM and let me know where she is located and one of us will be able to contact her and maybe answer some of her questions. Take care.

sherry

Shirley,

Firstly, …. [B]Please, please, please[/B], if she does have GBS, sterroids and immuno sup. will NOT help, in fact they may make things [B]WORSE[/B]. GBS generally does not respond well to sterroids according to trials and patients who have had sterroids in the past.

From what you say, she isnt going downhill, only seems not to be getting better – is that correct, I may not have read correctly. IVIG does not stop the attack, but it does help in the recovery phase, and since she only got one treatment of IVIg, i really am not sure what help it was to her at all. [B]PP treatments – the recommended does is 5[/B] to supposedly see any difference in the overall recovery. to be honest, they seem to have made a half harted attempt, and even though she is not covered, I would have thought that going the whole way would have been better than keeping her in a nursing home.

Another thing that MAY very well be a problem is the nursing home – generally this has not been a good option for many people because it seems that depression is a major thing that does seem to get worse in these facilities. It is extrememly important to get her on a depression medication as it becomes a vicious circle if this isnt treated! Cymbalta, Wellbutrin, Prozac, there are so many to chose from, but it is imparitive for her to get this treatment. Having said this, I do feel bad because I dont know if they will give this to her as she is uninsured (I am currently uninsured because of my Post GBS, nobody wants to touch me). mentally, once things are on the right track, things definitely DO become better for the patient.

I hope that helps.

Shirley, She should have medicaid, if she is in Oh. She should have had that paperwork done in the hospital prior to her release, by the social worker. If she is not on it, she needs an advocate than to get it for her. It can be filled out online in Oh. as can ssd.
My advice would be for her to get a new dr!!! one who knows what to do for the gbs patient. She has not been treated properly in any aspect.
If I can help please let me know. Take care.

Thanks Ali for pointing about the GBS issues with ster and immuno. I was just giving it from a cidp stantpoint.

Shirley-taking that financial issue down to gut level-the hospital and nursing homes want their money-heartless to say but honest. Ohio homes may work differently than Mich do, but the social worker probably srarted on her first day, figuring out the payment issues. And Ali is right about the numerous antidepressants your friend could be on.

Perhaps, Sherry, if she is her liason will be able to help get the docs on the same page and get that girl moving with the proper infusions. , in on a rehab unit, where they are youger people and not to desressing.

You and your friends are in my prayers, Shirley.:)

Emma

Hi Shirley-just checking to see if you heard from your friend and how she is coming. Sending you a hug along with my paryer. Just take good care of yourself-no good you getting sick too. I’ll keep following….sending good thoughts too… Emma

Shirley, PM me the county where your friend is in, I will look up everything to see what can be done about getting her medicaid. The hospital case worker/care coordinator did not do her/his job, she should have had it at that time. I feel sooo bad for her, I can’t imagine what she has to see at that nursing home. Is there a reason she is still in the nursing home and not in the same place her kids are? There are all kinds of federal/state programs that can help her-housing, health, food, child care, her own home health care etc. Its just a struggle to get into the system, but it is possible. I’ll be able to get more info if I knew what county she is in.

Hi Shirley, wondered how things are going. Hope better as I haven’t seen recent postings. Hope Angel was able to help you. Take good care.
Emma