No improvement after almost 5 months
April 24, 2018 at 5:16 pm
Hello to all….My stepson, Daniel is 19 years old. He has leukemia, and came down with GBS about 2 weeks after initial diagnosis of leukemia. He has been in the worst part of GBS since the first week of December, 2017. he can open his eye lids, and open his mouth about half way. That is all the movement he has. He has been on a ventilator the whole time. Still having trouble with his blood pressure being too low and heart rate fluctuating. Has anyone else had total paralysis for this long, 5 months? Can anyone tell me how long they were on a ventilator with GBS? Any info would be helpful. we are at our wits end. Thank you.
April 27, 2018 at 11:20 am
Every case and every patient is different. It makes no difference if somebody said 2 days, 2 weeks or 5 months on a ventilator, that answer, alone, is not helpful.
I note no one has responded to you in almost 3 days since you posted. I’ll tell you why I did not. It’s exactly what you said in your last sentence- “Any info would be helpful.”
What does the neurologist say? What treatment for GBS has he received and what treatment is he receiving now for GBS? Sometimes, a form of chemo is used to treat CIDP patients.
GBS symptoms not improving in 8 weeks is, by definition, considered to be CIDP.
April 28, 2018 at 5:30 pm
Your son’s conditions include a lot of variables.
He was diagnosed with leukemia: Had he been feeling “ill” or was he diagnosed following a routine check-up during which something was discovered? (I apologize; these things are not talked about in my family even though we have a history of cancer.)I bring this up because he was possibly either feeling poorly to begin with or the diagnosis was a shock to his system.
GBS has knocked plenty of us barely conscious (or worse) even when we were very healthy just hours before… I was on a ventilator for a week. I don’t remember having any pain but I felt like I’d just been shoved through a colander. Twice. Then rolling-pinned.
I don’t know much about the paralysis, but I have read about people being hospitalized for 6 months, maybe more. Each person’s experience is so very different. The lingering effects are also random.
This little bit has taken me a long time to write. It is difficult to come up with the words you need to hear when I wish we all had magic wands.
April 30, 2018 at 5:03 pm
thank you much for responding. His leukemia came on very fast. He was having some nauseia and about a week later came the diagnosis of leukemia. Then after another two weeks the GBS set in. I hope that you contuinue to fully recover from this.
April 30, 2018 at 5:29 pm
thank you JK for your response. neurologist are not 100% sure it is GBS. They diagnosed him as having the AMAN form of GBS. He has only received 1 treatment of plasma exchange and 1 treatment of IVIG. They are telling us they don’t know if he will come out of it.
May 1, 2018 at 9:02 am
One lasma exchange treatment is not enough.
May 1, 2018 at 4:42 pm
Neurologist considered another treatment but then decided against it. They said they didn’t think it would help
May 1, 2018 at 5:47 pm
GH is correct. I’ll take it one step further. One treatment of anything is not enough. Some neurologists are afraid to prescribe plasma exchange or IVIG. Find another neurologist who specializes in these conditions.
Repeating what the Neurology Department Specialist at Mayo clinic told me, “They did not give you enough, often enough.”
May 2, 2018 at 11:27 am
Plasma exchange worked for me, but I had at least two treatments before seeing any improvement. Not only that, but the actual plasma exchange experience temporarily made my symptoms worse. I would feel awful for the rest of the day after the treatment, a little better the next day, and then WAY better the day after that… on which day I would receive another treatment and feel awful again. (I had my plasma exchanges every other day, seven in all.) Every treatment was easier than the last one though and by the end of it I had gone from near-paralyzed to being able to stand and walk with a walker and two people assisting me.
If they had stopped at one treatment, I never would have made it out of the bed.
May 9, 2018 at 6:12 am
I am sorry this is long but I think the information I am providing will help.
–I have an extremely aggressive and severe form of CIDP and another disease called CMTX. I was diagnosed with both diseases on top of each other. The complexity and multiple variables of your son”s conditions are difficult but you need to get another neurologist immediately. I am appalled that he received 1 IVIG and 1 plasma exchange. Based on the severity of his onset and requiring a vent, the first line of treatment is a standard 5 days of IVIG for both GBS and CIDP.
–It sounds like he may have a form of CIDP similar to mine. Since he wasn’t feeling well before his leukemia diagnosis, some of that could have been the onset of CIDP, not GBS. If it was CIDP, when he suddenly progressed very quickly with his paralysis and need for a vent he was have an exacerbation. I had a sudden exacerbation of my CIDP-In less than 12 hours, I went from using leg braces and crutches to paralyzed from neck down and on a vent. Even though I was already using 5 days of IVIG every 28 days to treat my CIDP, doctors refused to give me any. For 4 days, doctors insisted CIDP wasn’t life threatening, doesn’t effect breathing, and so IVIG wouldn’t help and they wouldn’t give it to me. On day 5, my neurologist came to the hospital (because I stopped breathing-I was taken by ambulance to the closest hospital not the one he goes to) to take on the doctors caring for me. He convinced them to do IVIG for 5 days. I came off the vent before I finished the IVIG. By the time I was discharged 3 weeks later, I was back walking with my leg braces and crutches-back to the disability I already had. If he hadn’t intervened, I would not have survived.
–If your don’t think he had any symptoms of CIDP before his leukemia diagnosis, he can still have CIDP. There is a disease called ACUTE CIDP. It comes on fast, like GBS, but it continues to progress for at least 8 more weeks, instead of stopping like GBS.
–I am going to be blunt because I think I am doing you a disservice if I don’t. I survived my exacerbation 15 years ago but even with extremely aggressive high dose IVIG my disease continues to advance. I am in a motorized wheelchair, developed partial paralysis of my diaphragm so use oxygen, arms are affected, many other issues. I spent 208 days in the hospital last year alone- but longest continuous stay was 39 days. Ever time something goes wrong (like this yr 2 septic infections, aseptic meningitis and even a stroke) that should kill me, doctors don’t want to treat me because I will die anyway. 11 different times over the years I shouldn’t have survived but I did. If my husband hadn’t continued to argue, force them to treat me so I could have a chance to fight to survive, I would have been dead years ago.
–I think that might be what is happening with your son. The doctors figure he is so sick with both disease that he won’t survive no matter what so why treat the GBS or CIDP. The argument for treating the GBS or CIDP is simple and direct. If they believe he won’t come out of it, then there is no risk to him by trying to treat it. You don’t have to worry about a bad reaction to IVIG or making his condition worse. You have nothing to lose and everything to gain.
–I apoligize for the length of this but I didn’t know any other way to explain.
–I hope this has helped in some way.
–I will pray you son gets some treatment and he too surprises all the doctors by stabilizing.
May 10, 2018 at 3:56 pm
thank you so much for all the info you provided. I am currently trying to get dr to do another treatment of ivig. I pray Gods blessing upon you and your condition
June 4, 2018 at 5:42 am
Has there been any update on your step-son? I am almost afraid to ask. I was back in the hospital so this is the first chance that I got an opportunity to log on.
June 4, 2018 at 3:38 pm
Thank You for asking. No, there hasn’t been much change. Its been 6 months now and still no movements. The doctor did give him a second IVIG treatment week before last. It seemed to make him a little more alert for about 2 days, but overall did not do much for him. We are all questioning whether this is GBS or not. Its just been so long and there hasn’t been any real improvements. He is soon going to be discharged to a nursing home, one that accepts ventilator patients. We have been trying to get an expert neurologist to review his case, but not having much luck with that. Hope you are feeling better yourself
June 4, 2018 at 6:48 pm
I’m sorry that there hasn’t been any Improvement. I will continue to keep do you all in my prayers.
October 29, 2018 at 1:40 pm
So much time has past possibly to much time. But a review of the case and treatment but a full expert with these illnesses is far past due! Please call Dr Kasim Sheik at UT Hospital in Houston. He is a neurologist that is recommended by the GBS Foundation his office number is (832)325-7447 for his Medical Assistant and (832)325-7080 he helped greatly!! I can go into more later But Please call right away!! It is a massive strain on all of you I truelly wish you the best David
You must be logged in to reply to this topic.