Husband newly dx GBS but relapse at 4weeks, help or advice
May 4, 2017 at 1:18 pm
My husband Ben 34 yr old, has been diagnosed with Guillain-Barre Syndrome.Ben started losing feeling in his fingers and toes on Sunday evening, March 19, and by Wednesday, March 22, 2017 he was unable to walk and was admitted to the hospital for treatment. He received 5 days of IVIG. The doctors thought he was improving and moved us to a skilled nursing unit. However 2 days later on March 31 we were moved back to the hospital do to facial paralysis, low sodium levels, and difficulty breathing. On April 2 they had to put him on a ventilator because his diaphragm was weak. On April 6 he underwent surgery and they did a tracheotomy and inserted a feeding tube . He was given another 5 days of IVIG. He was improving greatly after the 2nd round.
We were moved to an LTAC ( long term acute care) facility where some rehab was done. They worked to wean him from the vent and PT/OT worked with him. He was beinging to be able to help roll himself and could manage to sit on the side of the bed for 20-30 at meal times and with a modified spoon he could feed himself pureed food.
He was breathing on his own with no ventilator and was only 2 days from being deemed ventilator free when he started to regress.
Now my husband can not squeeze your hand or move anything. He was put back on the ventilator. We have been moved back to moved back to the hospital where his neurolosgist can see him. They are doing more test ( lumbar puncture,etc)
They don’t believe it is CIPD. Some are questioning GBS because they say it doesn’t relapse at 4 weeks and once you start improving there aren’t set backs.
However I have been reading the forum here and have done research and have found that GBS or CIPD effects everyone differently and all treatments are different.
Does anyone have any advice or similar stories?
I know both I and my husband could really use encouragement.
Thank you for your time
May 4, 2017 at 2:28 pm
It seems to me that he was moved out of the acute hospital too soon, but that’s what hospitals do nowadays. I, too, was discharged early and came back — twice. In my case I was reclassified from GBS to CIDP.
These terms are just labels for symptoms, not the thing itself. Strictly speaking, to be classified as GBS certain conditions must be met. So maybe it isn’t GBS, but that doesn’t mean that they know what it is except that it’s a peripheral neuropathy.
It is true that there is a lot of variation. I was told that I was atypical under either diagnosis, but I’m not GBS so I’m classified CIDP.
Is he getting more IvIg? If the second round helped, why wouldn’t they try a maintenance regimen? Anyway, keep trying to improve the diagnosis and the treatment. These conditions require great patience and perserverance to get through.
May 4, 2017 at 3:10 pm
Thank you for your response
the doctors have told him that he fits somewhere between GBS and CIDP. Initially, his neurologist said he presented as classic textbook GBS but the weakening at 4 weeks wasn’t common
They have started IVIG again today. I will know more when I can see him this evening. I am not sure why they didn’t think a regimen was needed other than the doctors admitted he hadn’t reached his plateau when they moved him the first time.
thank you again
May 4, 2017 at 3:47 pm
any advice on how NOT to be discharged too early in case that is an issue again for us?
May 4, 2017 at 7:13 pm
Discharge policies vary. The hospital team + insurance plan + doctor usually decide on these matters. Typically, medical necessity of continued hospitalization is primarily determined by the presence of an acute health condition of sufficient severity that ongoing diagnostic or therapeutic intervention, or careful monitoring, is required.
The gray area may be in how the information is weighed and against what criteria. In order to argue for or against a discharge, you will need to know more of the facts involved. What is the guideline being used? What are the key measures of medical necessity at this time?
You may wish to paint a poor picture of the home environment he is being transferred to. That the environment isn’t conducive to his recovery or proper care and that his health could be in jeopardy by going home. But that tact could gear them up to sending him to another facility like an SNF.
Here is some information about challenging a premature or improper discharge:
July 3, 2017 at 8:11 am
Any updates in regards to your husband? Were they able to give him a diagnosis? Hope he’s getting better.
My husband had a small relapse then a big one all within 6-8 weeks of symptoms onset similar to your case (ICU 3 times total, close to getting ventilated each time but ultimately didn’t need it). His doctors also can’t decide if he has GBS-TRF (treatment-related fluctuations) or CIDP because timeline is completely off.
They want to watch him to see if he will crash again in order to determine a dx (which is completely absurd because he crashed hard this last time); their reasoning is that they don’t want to give him any more treatment/medication if his body doesn’t need it. But the unknown is driving us insane!
July 8, 2017 at 4:18 pm
hello lovelymoth, hows the progress of your husband? I hope he is doing great. I got GBS on nov. 2016, i got 13 plasmapheresis in the icu, i was hospitalize almost 3 mths, they give me physical therapy in bed at that time, i did make some little improvements and they sent me to a skill nursing home where i did a lot of improvements there but now i slow down and the neurologist suggest to get more plasmapheresis transfusions to re-enforce my immune system. So tell me hows your husband doing, prayers for your husband and you.
November 17, 2018 at 11:58 pm
How’s Ben doing now. My mother has been diagnosed with GBS 6 weeks ago and having similar situation like Ben.
Is it possible to share the treatment and diagnosis that finally took shape with Ben and what has been the results thus far.
Really looking forward desperately to your help.
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