terrified and questions….

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

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.

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

kbcd

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.

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.

kim,

gbs stands for Get Better Slowly. recovery rate is very high, but recovery time is measured in months & years. zoloft for depression. take care. be well.

gene gbs 8-99
in numbers there is strength

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.

[URL=”http://www.gbs-cidp.org/forums/showthread.php?t=38&highlight=Things+knew%5B/URL%5D

Dear dkbcd

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.

God bless

Hi Kim,

It’s very common for patients to have hallucinations when in the hospital,just one of the nasty things that come along with GBS. Don’t expect to see immediate results from any treatment he might receive. It just takes a long time unfortunatly.

Take care.

Kim,
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.

kbcd,

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.

Suzanne

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.

Kim, I’m glad to hear he is getting the treatment and care he needs. Keep us posted. take care.

Hallucinations are a result of the strong drugs…my mom experienced the same thing intil they changed the meds and reduced the dosage.

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

Kim, It sounds like you are in Texas. I live in Midland. Where exactly is your dad? Is he just north of Abeline? I think Im just about four hours from there. Let me know.Maybe I could be of some help. barbara

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

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.

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 😮

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.

Kim –

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…

Chris

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.
God bless