New diagnoses-please help

Hi, Christie. If your father’s at OSU, then I live in your area. I’m going to PM you with my contact info as well as the information for our local GBS foundation chapter. We have a support group meeting coming up at the end of September, and it’s for patients and caregivers alike in all stages of the disease and recovery. I know that the local group also has a list of former GBSers who are willing to come to the hospital to visit with current patients who need encouragement, support, or just a shoulder to lean on from someone who understands.

I also will be happy to give you the name of my neurologist, who is very knowledgeable of GBS (a rarity, let me tell you) and who gave me the very best care anyone ever could have hoped for. After having several horrible doctors in the beginning of my GBS experience, finally landing on a good one was a blessing. Don’t be afraid to get a second opionion or switch doctors if you aren’t happy with the way the present one is handling his case. Anyway, I’m glad to give you a positive reference for a very GBS-aware neurologist in Columbus.

And yeah, it’s definitely too early for anyone to be giving your father any kind of grim prognosis. I don’t know why doctors are so quick to write GBS patients off as lost causes!

Anyway, I’m going to PM you with the aforementioned details.

hi christie & welcome,

the docs are full of bs. much more important did he get ivig or pp? if not, the docs were negligent. plenty of recovery is his in the future. take care. be well.

gene gbs 8-99
in numbers there is strength

Christie,

I certainly hope they are suctioning him to help him out with the phlem, or have a suction at his bedside so that he can do it himself.

Honestly, It doesnt sound as if the medical staff quite understand what is going on here. Firstly, IF the docs had done Plasmapharesis they would have washed out all the IVIg, so Im not sure what their reasoning behind it all was as they would have washed all the good out AND you often dont see improvement in the patient after having done either treatment – normally either works just as well and it happens every now and then that a patient will have an allergic reaction to one, and it is then that they will try the other treatment.

With regards to the vision problems … once again how sadly wrong they are. Many of us have had vision problems, in some cases, if it started off with vision and affected the face first it is a varient of GBS called Miller Fisher, however, if the vision is affected during GBS and maybe during recovery, then it is not necesarily Miller Fisher but just another symptom.

I think you will find that there will be really good days and some bad ones still to come. Im not good at this, but can I suggest you keep a diary – not a long one, just little points everyday mentioning possibly what he did today that he hasnt been able to do in the past i.e. move his pinkie finger, or little toe; maybe being able to swallow more phlem insead of suctioning or having to spit it out etc. If you dont write it down, it often passes and one forgets where he was two or three weeks ago, and then become despondent because you think there has been no improvement. The smallest thing is an improvement, I promise you. It takes a long long time. I am so glad he seems to be keeping his spirits up. I think you need to tell him about the forum and tell him we are all rooting for him!

Christie,

I was worried about foot drop also. I think that I had used the rail at the foot of the bed to put the bottom of my feet on to keep the toes from going down, you know what I mean. Something to keep the bottom of his feet against to keep them in a normal position, other than having the tendency to drop down while he is laying in bed for so long.
Maybe I have totally confused you, but hope this helps…….maybe someone else can explain it better. We are all praying for you and understand Exactly what you are going through. Welcome to the “family” 🙂

Perry

christie,

ditto ali. to see if the ivig worked you don’t first look for improvement. you look for no more degradation. the improvement comes later & is even the smallest signs eg. vision clearing. gbs, although does not affect the optic nerve, it can affect the eye muscles which can blur vision. the half life of ivig is 3 1/2 weeks. pp is plasmapheresis/plasma exchange. if no more degradation, it should NOT be given. if they are going to do it, i suggest a 6 to 8 week wait. amitriptiline for gbs sleep problems. he needs passive pt all this while. is he getting it? they will work the foot among other things or, at least, they should. i am not thrilled abt what they have told you to date. is he in any pain? take care. be well.

gene gbs 8-99
in numbers there is strength

forgot to say that axonal gbs, which there is no way they can be sure at this time, has nothing to do w whether you get ivig or pp. good idea to get him away from these docs. take care. be well.

gene gbs 8-99
in numbers there is strength

Christie,

I am also glad you found the forum, it can really be a lifesaver (in more than one respect 🙂 ), specially for family members struggling to understand what is going on. The PT should be moving his foot to see if his feet are getting foot drop. Perry explained it very well,…. the problem with foot drop is that when it gets time for him to put his foot flat, unfortunately he may not be able to do so because the tendon has shortened, and it is EXTREMELY painful. Recently I saw a post where one of the newer members mentioned that he actually had to have surgery to lengthen it – which is just something you dont want to have to have to add to the stress of the body. If you are able, I suggest you do something similar to what Perry suggested, or you can gently push his foot upwards. Be very very careful tho because it may be painful for you to touch him, and also you dont know if he has foot drop how ‘bad’ it is. One thing they often do is make a special boot like thingy :p to put on the feet to hold them up. I know a number of patients also use sneakers and wear them in the hospital bed. Remember that the feet are probably swollen and painful AND (sorry, there are so many ands) they should be only kept on for short periods at a time.

Noise can definitely be a problem too ….. aaaah the joys…… I know that I am still bothered by noise or sounds, specially if there are a number going on at once, (like the kids talking in the back of the car, my husband trying to say something to me and the music is playing softly in the background, or sometimes the noise in restaurants) It ls like its grating on my nerves and I get irritated and upset and …… its really not easy to explain. Julie, one of our other members happened to mention to me that her neuro said that it is similar to when stroke victims are recovering. maybe it has something to do with the nerves not being able to handle it.

Genes last posts are spot on.

Please keep us updated, and ask all the questions you want. All the best to your Father in law.

Hi Christie, Welcome to The Family. Thank you for doing this research for Bob, That is Great! He needs All the advocates he can get. The dr was wrong with his prognosis! Way too early and he isn’t God either!;) With a positive attitude, a support system and knowledgeable and educated Drs He has a good chance of recovering. We do like to say GBS stands for Getting Better Slowly, it will be a slow recovery, with many ups and downs and plateaus. Pt/ot and speech therapy is important everyday, for short amounts of time. Rest, rest and more rest is essential for recovery also. You mentioned noise issues-Yes, I didn’t like having any noise, except when I had family members visiting, and then I was happy to have the quiet after they left! It seemed like my hearing was either really sensitive at times and then the opposite at other times-weird. Vision is another problem area for me. Even to this day I get it when I over do things or when I’m worn out, but with rest it does improve. Swallowing will improve, I found that with taking small bites of food and chewing it at least 50 times and washing it down with water helped alot.
With my first paralysis event my elbows were the only things I could move, but with good pt/ots they had everything moving enough that I was able to be transferred to a rehab hospital.
Touch is another area where you want to ask Bob if he is ok with it before continuing. Sometimes sheets can be painful for gbs patients, touch can send them into the ceiling tiles quickly. For me during my initial event, I had no pain, couldn’t feel temps or painful touching-thankgoodness;) , but its always that way. In my following relapses it was totally different though.
Please understand to keep an eye on Bob’s breathing(should be on a monitor) as this stuff can affect the breathing muscles at anytime(see Kerry’s Moms’ postings) Don’t be afraid to speak up when something is different or you just don’t like the way something looks or sounds.
Keep up the good work and feel free to ask any and all questions or just vent when you need to. Take care.

christie,

‘in Cinti they were working him very hard in PT’

big error – more than a fair chance they made him worse. gbsers can not be over stressed. any activity must be recovered from in 12 to 18 hours or it is too much & will hinder gbs recovery or worse. take care. be well.

gene gbs 8-99
in numbers there is strength

christie,

that’s good news. he’s on the recovery road. make sure he gets all the rest his body tells him he needs. make sure pt/ot is not over done which is how non-gbs pt/ot is done. take care. be well.

gene gbs 8-99
in numbers there is strength