HELP, friend with GBS
AnonymousJuly 21, 2008 at 12:23 pm
I met a young woman in hospital, Dec. 07, she has GBS in her legs only and can not walk. She was given one ivig treatment and 2 pp treatments while in the hospital. She was then put in a nursing home around Christmas time, because she had no insurance. After all this time they are going to give her ivig again. I believe she said they would give it to her and wait 4 mo. to see how she does.
I don’t know that much about ivig, as I got pp. From reading the post of ones that get ivig, I told her to talk to her Dr. as I thought she should get a loading dose of 5 days and then a few weeks after that and if she improves they could spread that time out more.
She has a nursing home Dr. and a neuro that don’t work together, she knows they should and I have encouraged her to be aggressive on that.
When she calls, she is so upset and can’t hardly talk for crying. and it breaks my heart for her. She has seen so many elderly patients die in the nursing home. She has lost her husband (divorce), her home, her pets and her two school age children live with their grandparents.
All of this affects her mentally and she is on medication for it. I hope I didn’t give her the wrong advice but I told her to talk to Dr. about her medicine because I think maybe they needed to increase it or change it.
Please give me advice that I can give her.
AnonymousJuly 21, 2008 at 3:21 pm
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.
AnonymousJuly 21, 2008 at 3:23 pm
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.
AnonymousJuly 21, 2008 at 3:27 pm
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.
AnonymousJuly 23, 2008 at 9:01 am
Brett, Keep those prayers comming.
Julie, They have left her months to go downhill. Her Dr., told her he didn’t foresee her ever walking again but yet agreed to give her ivig. I told her not to go by what he said, if she gets the ivig loading dose and maintenance doses after that there is always a chance of improvement.
I’m going to tell her to talk to Dr. about the steroids and immune suppressants if they don’t do the ivig closer together. Can they be given along with the ivig?
I’m trying to get her to have her daughter and any family or friends to join us here. She doesen’t have access to the internet and not much support from family, other than young daughter and even younger son. I’m sure it would help her and them.
Emma, She has tried to apply for disability but says Dr. would not do paperwork or sign off on it. I’m going to tell her about social worker at nursing home and have her request to see her and the medical director.
She did not get any improvement with the 1 ivig or 2 pp treatments she was given back in Dec. 07. She has had no treatments since then until now, which I know is not the loading dose with maintenance. They give her physical therapy 2 hrs. twice a day. She says they don’t understand GBS and are pushing her too hard and she is still not improving.
Thank you all for responding, you have really helped me with the information and hopefully I can help her with it and prayers.
AnonymousJuly 23, 2008 at 1:36 pm
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.
AnonymousJuly 23, 2008 at 6:58 pm
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.
AnonymousJuly 23, 2008 at 8:50 pm
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.
AnonymousJuly 24, 2008 at 1:20 am
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.
AnonymousJuly 24, 2008 at 5:42 pm
Emma, Since she has been dx with GBS, as Ali says, Steroids ans immuno sup. would make it worse. Have talked to her about therapy, she is going to talk to them. Don’t know if she has talked with social worker, will ask her. Her main family support consist of 2 teenage children.
Sherry, Sent you a pm.
Ali, We had a conversation about no steroids with GBS. her last phone call to me. Will tell her about no immuno sup. with GBS when she calls. She hasn’t gone downhill, says she is the same as when I last saw her in hosp. Dec. 07.
I feel the same way about the half hearted attempt. She is on medicine for depression, don’t recall the name of it. I told her to talk to Dr. about increase or changing it as she is very depressed and crys so much.
Cheryl, I don’t know about medicaid, will ask when she calls. Said she doesn’t have access to internet at the nursing home. I think she feels stuck where she is and with Drs. she has, will also ask her about changing Drs. Your so right that she hasn’t been treated properly.
I felt so helpless each time she has called and been so upset. I didn’t know what to say to help her. All of you have helped me with information and advice I can now give her when she calls.
I am very thankful for your help.
AnonymousJuly 24, 2008 at 11:17 pm
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.:)
AnonymousJuly 25, 2008 at 11:34 pm
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.
AnonymousAugust 3, 2008 at 1:13 pm
Emma, I get on and read post but don’t stay on long. My feet and legs swell and hurt so am keeping them up most of the time. Hope they get better after my stents are put in.
I haven’t heard from my friend with GBS as I have lost her phone#. I’m waiting on her to call again and then will contact Cheryl (Angel).
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