terrified and questions….
AnonymousMay 8, 2007 at 12:00 pm
Hi, My dad was just diagnosed with this last week. He has been very sick the last month. Losing 30 pounds, and several other symptoms. About 2 weeks ago he woke up and couldn’t see; double vision. Then a week later he woke up one morning and couldn’t swallow anything, he gags everytime he tries. He was finally admitted to the hospital where they ran several tests, and came to this diagnosis. A week later still no improvement he can’t move his eyes, he is on a feeding tube, he can’t walk because he gets dizzy, and blood pressure is out of control. Today the doctor wants to send him home…Does anybody have any suggestions? Is this normal procedure to act this way? Please let me know. Thanks, Concern for my father
AnonymousMay 8, 2007 at 2:39 pm
Did they say it was GBS also was he given IVIG in the hospital. I was in the hospital a week and on IVIGs every night. It definatley is not right to discharge him in the condition he is in. This to me sounds like an insurence issue with the hospital. I would NOT allow the hospital to discharge him. We all are here to help you anyway we can. Please give us more information about what your dad has and if he has been given anything to fight what he has. May gods blessings be with you and your dad
AnonymousMay 8, 2007 at 3:54 pm
Hi, He was given the IV thing since last weds night, and started his second set today. They diagnosed him last weds. with GBS. I just got word that the hospital couldn’t release him due to his blood pressure being about 200/145. Any support or information would be greatly appreciated. Thanks
AnonymousMay 8, 2007 at 6:07 pm
It seems as if the GBS maybe spreading throughout his body and releasing him from the hospital right now would be a BAD idea. The IVGI is a slow process giving the person little dosages day by day. Depending on how sever his condition of GBS is he may have to do some sort of therapy…i.e physical, occupational, and/ or speech.
I hope for the best for you and your family…stay positive. Let us know, how things are going.
AnonymousMay 9, 2007 at 10:19 am
hi kbcd & welcome,
ivig may not show improvement. what is must do is stop the decline. it works on 70% of us. if after 3 to 4 weeks he is still going downhill, it can be assumed the ivig is not working & plasmapheresis [pp] should be tried. all his problems are within the normal range for gbs. given his condition, in 8 years i have never heard of anyone in as bad shape trying to be released from the hosp. the folks there must be crazy. do not consent to his release. in fact threaten to sue. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousMay 9, 2007 at 11:13 am
In the case of GBS, the myelin sheath and/or axons are attacked for up to 4 weeks. After the 4 weeks he may still be paralyzed for a quite a while, but IVIg at this point is said to not help as the body is not being attacked at that point. ,As gene said, if IVIG is given you will not necessarily see a change or improvement as this could take a long time. IVIg is given to try and stop the attack and not to make the patient ‘better’ as such. He should not be discharged at this point and does need to have things like physical therapy. PT is done even when the patient is paralyzed, this will help for foot drop too.
AnonymousMay 9, 2007 at 3:37 pm
kbcd, the elevated blood pressure is another sign of gbs. it can go up and down uncontrollably, don’t be shocked. pt is a must and if he has the facial, eye problems he needs to have other specialists involved in his care as well. just to make sure everything is going ok. and if your dad feels like he is having breathing problems make sure he gets attention right away. even though he has had this for a week, and ivig, he can still develope breathing problems. make sure he is being followed by respiratory while he is in the hospital. daily breathing tests are essential, and they are also a good way to tell if he is making progress in his recovery. in my opinion, your dad needs to be in a hospital for as long as it takes to get his swallowing, eyes and body working correctly.
AnonymousMay 11, 2007 at 10:57 pm
Well, no improvement at this time. They are doing a second set of the IV meds. He is getting very depressed. It’s been 2 weeks almost in the hospital and he still can’t eat, see or walk. Now he is having hallucinations. Is this normal for this? Please any advice would be of great help. I am going to see him tomorrow. Thanks, Kim
AnonymousMay 12, 2007 at 10:34 am
Many people with GBS have reported hallucinations, so this is is a common occurance.
Your dad still seems to be in the 4 week “window” I spoke of earlier where the body is under attack. If the IVIg stopped the attack you wont see improvement yet, it takes a LONG time. Gene hit the nail on the head, it is a common saying for GBS. One unfortunately has to be patient, which is hard for family and the person with GBS.
I think it is important that you tell your dad about the site. Tell him that others have experiences what he is going through and that we are thinking of him. There is a thread called “[B]Things I wish they knew[/B]” which may be interesting for you to read before you go and visit your dad. Please keep us updated, and let us know how your visit went.
This is the thread, just copy and paste.
AnonymousMay 12, 2007 at 10:08 pm
I just read your post and I had to read it again.
Your Dad has been diagnosed with GBS, “he can’t move his eyes, he is on a feeding tube, he can’t walk because he gets dizzy, and blood pressure is out of control. Today the doctor wants to send him home”.
Personally, I would be asking that doctor if he is serious? Also if he knows anything at all about GBS and if he will stand by his decision whatever the outcome? I get the strong impression that your doctor doesn’t like having sick people in the hospital.
As already mentioned GBS usually hits its peak in 3 to 4 weeks. The idea of IVIG is to try and stop the progression of the GBS. Sometimes it works, sometimes it doesn’t and sometimes it seems to work and then the GBS kicks back and continues its journey up the body. It’s the same with plasma pheresis (PP).
Now, I had IVIG and nothing occurred. I then received PP and that worked for me. Again, it doesn’t work for everybody.
How a doctor would consider your Dad well enough to leave hospital is beyond me.
If, in order to save money, that doctor wants to push people out of hospital, he’d be better off closing it down and saving more (money, not lives).
I would ask the doctor for his – written – advice as to what to do and how to cope (if your father goes home) regarding his out of control blood pressure, his inability to walk and how to operate the feeding tube. I would also ask for his – written – opinion as to why he thinks it is satisfactory to send him home at this point in time. Also, what to do if he deteriorates – particularly as he has only recently been diagnosed with GBS. I would want to know what therapy the doctor suggests etc. Also, as further complications such as pneumonia happen rather often with GBS, how precisely does he wish you to act?
To put it another way, there is no way and no how that I would accept that he ought to leave hospital at this juncture.
Though I would like to say more, it is late and I am falling asleep.
AnonymousMay 14, 2007 at 10:31 am
This forum has been a great place to get some reassurance. I was finally able to be an advocate for my father this weekend. I went to see him Saturday and he couldn’t talk, his eyes are now closed, he was not co-herent at all, and he was gasping for air and they had to suction his mouth every 30 seconds. I requested the doctor come and see him immediately, and that he be moved to ICU. They finally did that and he now has pneumonia really bad and they had to put him on the ventilator yesterday. He is heavily sedated at this time , but the hospital is trying to stabilize him enough to transfer him to Stanford Hospital in Palo Alto. Any Advice would be great. Thanks, Kim
AnonymousMay 14, 2007 at 11:13 am
If you go to the Main Forum, I have just posted on “Things I wish they knew” which has brought it to, or near to, the top. Please take a moment to read it because one or two posts may be helpful to you. I have spoken to a few family members of patients who have printed this out to take to hospital as a FYI.
AnonymousMay 14, 2007 at 8:03 pm
Since the active phase of GBS can last up to 4 weeks, as Ali said, it is important that your father be in the hospital (preferably in ICU) where he can be monitored at all times. If the weakness progresses, he could suddenly stop breathing, or his heart could stop. As his doctor how he can in good concience recommend that your father be discharged under these risk conditons. I strongly suggest that you fight the doctor on this.
Teresa Anne’s recommendation for getting the doctor to put this recommendation and reasons in writing is excellent. Also ask him to acknowledge the risk of stopping breathing and heart failure in writing. Bet he changes his mind.
AnonymousMay 14, 2007 at 8:34 pm
Kim, what type of a hospital is your dad in now that they want to transfer him when he is in this condition? does Stanford hospital have more knowledgeable drs? and care for the gbs patient better? be your fathers’ voice again and check into stanford and the drs who would be caring for your dad. you did a great job, forcing the dr to care for your dad properly-well done! i’m sure your dad will tell you himself when he is able to. keep up the good work. take care.
AnonymousMay 16, 2007 at 2:41 pm
I just love this site. Well, my dad is now at Stanford. It is a great hospital with more experience in GBS. The doctors said yesterday they think he has the Miller Fisher variant to GBS. Due to the problems starting from his head. He is able to respond to the doctors. Yesterday he even tried to open his eyes. I try and see him at least once a week, since he is over 2 hours away now. He is still fighting the pheomonia infection and on the ventilator. I was looking at the main forum on the Things to know, but at times he seems to be very upset and he will begin to get tears after frowning and attempting to move. They are talking now about doing the Plasmapherisis. They did the IVIG for about 10 days off and on. Yesterday i just told him I wanted to hold his hand and he nodded yes, and then rubbed my hand. Thanks for all your posts and information. Kim
AnonymousMay 24, 2007 at 12:16 am
Kim, the diagnosis of Miller Fisher sounds like they hit the nail on the head. It really affects the eyes and the throat.There is a section on this forum for MFV.It also affected my taste buds. My eyes were stuck open. I also got the look of bells palsey, where the muscles of the face fall. It will get better. Hang in there and God bless you and your family. barbara
AnonymousMay 24, 2007 at 11:16 pm
Actually we are in the foothills of California. So, anybody who is in California that has information it would be great to share. He is possibly going to be moved to Placerville again, and Stanford too said that it is Miller Fisher variant. He is trying to talk, took a few steps yesterday, and wants to go home bad. They aren’t letting him go home right now though, due to his breathing muscles being very weak. Thanks for all of the support. Kim
AnonymousMay 24, 2007 at 11:58 pm
kim, sounds like your dad is better or at least stablized. There is a town Palo Alto in Texas also and a town named Stamford that is about two hours from there.:confused: I couldnt remember if it was stamford or stanford so that is why i thought you were in texas. any way good luck and God bless. keep getting info for your dad. it may be the best thing you can do for him right now. barbara
AnonymousMay 25, 2007 at 11:12 am
Aw, that made me tear up a little bit, thinking of your dad giving the “thumbs up” sign! I haven’t posted in this thread before, but I’ve had your father on my mind ever since your first post here.
It’s scary not to know what’s happening to you, and not to be able to communicate enough even to ask questions about what’s wrong with you or what’s going to happen next. Being so helpless like that, it makes people like you even more important. And I know it’s scary for caretakers, too, not to know what’s wrong with their loved ones and wanting to do the best for them but not knowing how. You’ve done an incredible job of seeking out information to use to help your dad when he’s needed you the most.
I just want you to know how special you are and how lucky your dad is to have you caring for him and advocating for him to ensure that he gets the best care possible. Thank you for all you have done, and for all you continue to do!
I hope your dad continues to steadily improve. I’ll continue to keep him in my thoughts.
AnonymousMay 27, 2007 at 10:03 am
You all have been so great. I am going to see my dad today, and I hear he is doing much better. I know we may not ever find out what brought this on, but I have been doing some research on the net and found that some molds could bring this on. Has anybody heard of this, and what should we do if we suspect that this is the cause? My dad just recently the last 12 months remodeled 2 homes.. I am just concerned if this is the case for him to go back until the home is tested. Any advice would be great. I will give you all an update tomorrow about how he is doing. I hope everybody has a safe and good Memorial Day!!!
May 27, 2007 at 10:35 pm
Hi Kim, I’m not 100 % sure, but I think Emily’s mom Kelly may have posted about mold. If not, it was definitely a mom of a child with cidp/gbs. Try private messaging Emily’s mom. I am sure there was a post about mold and gbs/cidp! Try entering mold under search! I hope you can find what you are looking for. Dawn Kevie’s mom 😮
AnonymousMay 28, 2007 at 1:57 am
Rest assured, hallucinations are quite common – it is funny to read back over them sometimes but believe me at the time they are very real. Apparently it is the combination of drugs and just being in the iCU environment.
It sounds like your dad has reqlly started to improve. It was almost 5 weeks before i could even stand and i was walk3ed out of hospital at 7 weeks so hopefully it is all downhill from here.
AnonymousMay 28, 2007 at 9:24 am
Okay I will look that up about the mold. My dad was very tired yesterday, but still very responsive. He was off the vent for almost the whole day and if he did okay they were going to take it out today. He has been on it for almost 2 weeks now. The nurses all said he was doing great for all that he had been through the last 4 weeks. He keeps trying to open up his eyes to see me when I am there, and will smile. So, I think we are only on the up hill from here like people have been saying. Thanks so much for all the information.
AnonymousMay 29, 2007 at 11:01 pm
Okay heres an update….. Any advice for the doctors ect would be of great help.Well yesterday was a great day for my dad. They took the tube out and off of the vent. He was sitting up in a chair. Laughing and talking up a storm. He even went for a short walk down the hall. Now today they are checking him again for pneumonia and had to put him back on the vent because of his breathing. They are talking about a tracheotomy, and they had to put restraints on him because he is trying to take tubes out and get up and leave. He also didnt know where he was today and was not coherent… It has been about 4 weeks in the hospital now. Is this normal what he is going through. Again, any information for the doctors or nurses would be great.
P.S. I am going to visit him tomorrow.
AnonymousMay 31, 2007 at 11:08 am
What is his condition now? Hopefully, people with more experience than me with longer term hospitalization issues will respond here. Since I didn’t go through that, I wasn’t sure what to say to you. I wondered if he had simply overdone it for a day, and was having a bit of a regression?
It would be great if you could describe more what’s happened in the last couple of days. Is he still at Stanford?
I’m praying for you and your dad. I’m not that far from Stanford here in San Jose, it helps me to remember about you and your dad…
AnonymousMay 31, 2007 at 6:45 pm
Hi, They sent him back to Placerville last Friday. I saw him yesterday and he has a trach and they taped open his eyes so he could see a little. He sat up in a chair about 2 hours and then was ready for bed. They were able to unrestrain him and he was a lot calmer. They resp therapist took him off the vent for almost the whole day, and just gave him oxygen and his breathing was doing great. They don’t think his breathing is the problem it’s keeping the airway open because of the amount of secretions in his mouth, throat, ect… He was able to suction his own mouth yesterday,but needed help with suctioning his trach tube. He is really getting bummed about not seeing huge improvements. I told him about this site and that there are so many great people praying and thinking about you, I also told him I am getting a lot of info to share with him. He wants to see the grandkids very bad. So, we are going up on Sunday to see him again. Thanks, Kim
AnonymousJune 1, 2007 at 3:04 am
Do you mean he does have the strength to walk if not for his dizzyness ? I would think he could not walk anyway, due to weakness more than him being dizzy. Sounds to me like he needs a good DR. and really fast. This GBS is not anything to dilly dally along with. How old is he now ? They say it is worse the older you are when you get GBS. Let us know if you get him some help, and what the new DR is doing for him. Is he also in a lot of pain ? Talk more later.
AnonymousJune 1, 2007 at 8:57 am
Hi, He can walk a little and then he gets tired. Of course this is with the help of a walker and his Pt. He still gets very dizzy when he stands up. My dad will be 63 in August. You know he says he has no pain, so we don’t know because with this we have all read there is pain. Two hospitals have diagnosed him with this. I met his doctor the other day she is very young and doesn’t seem to know how to deal with this. I will check in when I go this weekend with the doctors. Thanks, Kim
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