New here. My Mom was diagnosed with GBS

hi & welcome,

20 days, only 20 days! how can the neuro know anything in 20 days. gbs is measured in months & years. she will die in minutes w/o life support. what have they done for her so far? ivig? plasmapheresis? is she in pain, important that you/we know? some folks have been on the vent for a year. where does he get off suggesting terminating life support? grrrr! sorry for the emotion. where do you live? you need another opinion. i keep a list. take care. be well.

gene gbs 8-99
in numbers there is strength

Hi Lrf, Welcome to The Family. I’m with Gene on this one-Only 20 days and you have major Life or Death decisions to make—-NOT!!!! She might be on the vent for another day, another week, Or even Years, Don’t Disconnect until you get her a 2nd, 3rd opinion, by someone who knows GBS/CIDP!!!! Only 2 to 3% of All who get GBS, die from it, When You really look at the numbers it isn’t that many! She needs to start IVIG or PP and then IVIG to stop the damage to the nerves. There are no cures, but treatment can help stop the damage to the nerves, so they can heal SLOWLY. Please Stand Up and Fight for Your Mom, you know that is what She would want You and All her Family to do for Her! NO one knows how well, fast or to what extent She will recover to, But She needs the time to do it in. We like to say GBS stands for Getting Better Slowly. Please read renrose’s post on the main thread in regards to her dad and his recovery, it will give you the boot in the bum to fight for your Mom. Please feel free to ask All the questions you have or just to vent when you need to, we understand, we have been there. Take Care.

Lrf welcome.

I am absolutely [B]SHOCKED[/B] at what your doctor had to say. Im sorry, but Gene is absolutely right (and I have never seen him so emotional before!), your doctor can know [I]absolutely nothing[/I] in 20 days, NOTHING. I was fully paralized, they even had to tape my eyes shut and had a trach for 6 weeks, can you imagine if they decided to take me off life support! I wouldnt have my wonderful 2 children, traveled the world and lived my life! Many, many GBS’ers are on ventilators for far longer and with the CORRECT attitude from doctors and therapists walk again and live life to the full. You have to find another doctor, Gene may be able to help.
Also, the Foundation has a few names of doc’s that patients have submitted when they feel the doctors have been good. Please also sign up with the foundation to recieve booklets that explian GBS as well as quarterly newsletters – its free and it has a great deal of info.

Hi Lrf

I will pray for your mom…but completely agree with the others on this one. 20 days is nothing in the grander scheme of GBS and outcome. At 20 days she is still under attack and needs IVig and or Plasmapherisis!! Usually (unless like your mom someone ends up paralyzed and on a vent) diagnosis is just beginning to be made. Tell that doctor to stick it up his You-Know_What and get a different doctor NOW!! Your mom can make a complete recovery and be running marathons (hypothetically speaking, but you know what I mean…I hope) in a year if she is given the proper treatment NOW. There is NO reason to even consider removing life support! There are 3 stages to GBS…the first, which she is in right now is the attack part. That is where the problems are. That reaches a peak in about 3-4 weeks and the second phase starts which is the plateau stage. It can be short or long and that is when the attack has stopped. The third phase is recovery. It can last weeks, months, even years. BUT IT DOES HAPPEN! Insist on a new doctor, insist on IVig and/or plasmapherisis, and let them know in no uncertain terms that she is not to be removed from life support. Sheesh she can still respond to questions if you ask her…thru some sort of way be it blinking or eye movement or something. She is still alive and her brain is still alive. Removing life support would be murder and that doctor should be severely reprimanded for even thinking that without doing a serious amount of research on GBS. A doctors job above anything else is to sustain life and to protect life. He is NOT doing his job or upholding the hypocratic oath he took (at least I think he did, or at least he should be aware of it) when he entered this profession.
….”To consider dear to me, as my parents, him who taught me this art; to live in common with him and, if necessary, to share my goods with him; To look upon his children as my own brothers, to teach them this art I will prescribe regimens for the good of my patients according to my ability and my judgment and [B]never do harm to anyone[/B].

[B]To please no one will I prescribe a deadly drug nor give advice which may cause his death[/B]”

I asked the doctors who performed CPR on my mother for 45 minutes why they did so for so long knowing there would be serious consequences. They told me it is their job to protect her and her life.

Please find a new doctor today. And please keep us informed, we are all here to help in any way we can.

Prayers and hugs
Lori

here is renrose’s post in case you had trouble finding it. take care. be well.

Hi gang, It’s been a while since I have been to the forums – just busy but I think of you all! Actually Ali, sent me a message tonight and I was like OOOOPS!! I forgot to tell the REST of my family how well my dad is doing!

One year ago today GBS took my dad out of the loop. He was 65 at the time and on August 12th last year he was busy working and placing concrete like he had done for years. August 13th 2006 he woke up unable to walk and barely able to talk and within just a few hours he was paralyzed from his eyebrows down and on a ventilator. He spent months in a coma and 10 months on the ventilator. It took him 2 months to wean off the vent but he has succeeded! Today they sewed the hole in his throat closed. YAY DAD! He has just moved to the rehab unit and he now has enough movemnet in his right shoulder to be able to operate the armrest on an electric wheel chair. So he is self-mobile! He still is not able to move his hands or his legs ( he can sort of wiggle his legs kind of side to side about and inch by using his hip muscles) and he is now able to eat minced food so Like I told Ali, I sneak him chow mien noodles and iced coffee milkshakes! His docs say he will likely be another year in the hospital and then depending on what progress he makes in that year he may be able to go to an assisted living home. Unfortunately, with him having had extensive axonal damage it is unlikely that he will ever be able to walk again as they say that those nerves are just too damaged. His spirits are good and he is excited about his new-found mobility and now chases the nurses around the unit.

Just thought I’d share my own bit of joy and let my GBS family know that I was thinking about them on this anniversary date.

Love you all and take care Erin

gene gbs 8-99
in numbers there is strength

[B]Dear Lrf

Please [SIZE=”6″]DO NOT[/SIZE][/B]take your Mom off the ventilator. Most doctors do not know a blessed thing about GBS. There are so many who were
vent dependant for the longest periods of time and are here to tell their stories. You never give up the fight for her or let her give up the fight. She is only in the very beginning stages of GBS and needs to start the road back to recovery soon. She will need physical and occupational therapy [B]ASAP

Be her advocate until she can talk for herself. Many prayers for Mom coming her way from all of us here.[/B]

I read the posts and I am as mad as a hornet. I was on life support on day 20 and they were not sure that the Plasma had worked to stop the progression of the attack on my body. They did not even do a nerve test and were not even interested that I did not have any reflexes. I am just so upset that a Doctor would even take away any hope that a family had. Think of how we felt being held in our bodies not being able to comunicate with anyone, but we heard everything and understood it. I hope that this will make her fight this even harder. I am getting in contact with some friends that did not make a quick recovery but are still with us after many years. I am only 22 months from my onset so I am too emotional and want to remove a few parts from this Doctors head, since he is not using them! 😮

Everybody said how I feel about your Mom’s care.I just have a story to add of encouragement. My friends Aunt had GBS about 20 years ago before any treatment available and she was on a vent for 12 months. She had absolutely no movement and no way to communicate. She could hear them talk about turning off the vent and she was so scared but had no way to tell them she was in there. Fortunitly, her family refused to give up and in a year she started moving and had a complete recovery.
Go to your Mom right now and tell her there is no way you will let the doctor take her off the vent. She is scared and she needs to hear this! Her mind is normal. Also I agree with everybody – you need to find a new doctor. Dr. Shawn

NO WAY!!!!!!! Just look at these responses…..I have never seen this forum get so enraged to a post like this. This “so called Dr.” sounds like he doesn’t want to be bothered with dealing with this, so he advises removing life support?????:mad: 😮 What the H……????
Please listen and heed what we are saying………… Your Mom can beat this thing, with the RIGHT Drs. (Nuerologists) attending this case!!!!! My God, I have never heard of such a suggestion (especially after 20 days???). Good grief. Do get another (or two or three) more opinions, please.
God Speed,

Per

Do not walk, but RUN to a new DR. and/or facility!!!!!!!!!! At 20 Days she is not even through the acute part of GBS! She has much recovery to look forward to! Make sure you talk to her, as she can hear everything going on around her and must be so frightened. There are people and Dr.s that can help! Act quickly and be her advocate. Do not turn off any life support! I can’t believe they are even considering this as on option?! If this kind of thinking were “mainstream”, most of us on this forum would be dead! Please let us know how yall’ are doing and come to these forums for any advice/help you might seek. Many of the people on these forums have huge funds of knowledge on this subject and would be more than willing to talk to you. You can also contact the foundation, and they could tell you of someone in your area that could come and visit you. I will keep you in my thoughts and prayers.

LrF……………..Sorry I got so “hyped” about the subject, I forgot to say welcome to the forums! We are all here for you!:)

lrf,

since mom had the ivig, can you see even the slightest improvement, eg. an eyelash flutter, a finger spasm. is she in pain? right,

she will be in icu for a long time. then she should still be in the hosp, but in regualr ward. although this is far off, delay

any move out of the hosp cuz the care elsewhere will be less. the docs 1% talk to you is hooey. he has & there are no facts to

support this claim. keep us posted on this thread.

i have no gbs neuros in wv, but here are some in va in case you need them:
VA Dr. Frank specializes is GBS, but you have to understand there are so few cases and so much unknown and limited resources

for treatment

Alexandria, we’ve been dealing with George Washington University. The neuro there we use is Samuel Potolicchio. He was and still

has been great with Jim. If it wasnt for them, he would not be here with me today. I highly recommend them

take care. be well.
gene gbs 8-99
in numbers there i

LrF, I for one feel sooo much relief! Keep stoking that fire Hun!! The ncv/emg tests done soo early may not showgood results, i can tell you i’m feeling better results after a few months. The fact that your Mom is moving her eyes, lips and head are really good signs, don’t let anyone give up on Her. It may take time to recover, but I feel She will. Just one of those Mom feelings I get.:) Please give her plenty of Hugs for me. Make sure the atmosphere around her is a Positive one at All times, it does wonders for the patient in recovery. I’m really relieved at Your news, please keep us posted. Take Care. And Please Keep Educating Those Drs!!!!

I am so very glad that you have rattled some cages, well done! Your one post earlier today said that you feel your mom already has some movement in her head, mouthing words etc, This is how things slowly start coming back, and I am SO happy that you are starting to see some improvement.
A really good idea, and I know it has worked for some people, is to keep a diary. It helps you and your mom focus on the small but very crucial improvements that take place. Sometimes nothing happens for a week or so and everyone become dispondent, but when looking back in th diary you will see how far the patient has come.

You are close enough to Johns Hopkins in Baltimore too – I see Thien Nguyen who was trained by that expert (don’t ask me his name, I can’t remember but he did that video on GBS you all referred to earlier). He is excellent, very informed about CIDP and GBS. This is my FOURTH stop – started with private neuro who was lost, went to GWU, then Georgetown and finally Hopkins they figured it out. I am not far from Martinsburg too so if your mom would like a visit please let me know, I was just near there last weekend at a family reunion, you are only about 45 minutes from me. Please let me know if I can help in any way – it’s scary to go through this not knowing what your resources are or what to expect.

Julie

OK let me just add this again – NOTHING against Morgantown, many of my relatives live there and some used to teach at the University but they are not AS familiar with this stuff as is a major university like Hopkins. The number of the Neurology Dept. in Hopkins is 410-550-7095. If you decide to consult with them have your doctor pull together and fax some information and a request for a consult to 410-550-0539 (their fax number). This is the best way to do it – if you call yourself you could wait months but if your doctor requests a consult you could be seen within a few weeks, maybe less since she is in a critical stage and needing good care RIGHT NOW. You really aren’t far from there – it only takes me a little over an hour to get there – Morgantown is 4 hours from me!

I agree with the others that it might be best to move her to another hospital that has doctors that have more experience with GBS. I have the number for Bob, the Liason from the Morgantown area and Bob can give you the name of a good Neuro that he used or knows of. Or another hour from Morgantown is Pittsburgh and I can give you the team of Neuro that treated me. Up here that same team transferred me after my IVIG did not work like they wanted it to. The second hospital is where I got the Plasmaphresis that worked. But it was still a slow recovery. Make sure you get the hosptital that is convenient for your family to travel too also. I agree talk to your Mom…..she is there…..totally aware of what is going on. So far what she has heard has not been possitive. Tell her she WILL get better! Just take longer than we would like. Everyone is different….but she is where I was at that time. Tests can have misleading results. I hope your family gets results on this soon it will be better for all of you.

Lrf, So happy to hear the good news. You saved you Mothers life! Now she needs to hear all about GBS and the good prognosis. Most studies quote a 2-4 % survival rate. Also 95% people with GBS in the acute phase require iv narcotics. She is probably in alot of pain and can not tell you . Be sure to ask her doctors for pain meds. Dr. Shawn

dr shawn,

do you mean 96 to 98 % survival rate? more importantly can you give us the source of 95% need ivig? oops, i just reread what you said. did you really mean narcotics? either way the source would be most helpful in the future. thx. take care. be well.

gene gbs 8-99
in numbers there is strength

I am so sorry for your mom and your family. Encountering this virus is bad enough, and then to have to deal with that and an incompetent doctor at the same time??? I am very sorry for you. I don’t understand how a doctor knows enough to diagnose GBS and yet know nothing about how to treat it or the fact that it takes a long time for improvement to occur. Please find a new doctor. Find someone who knows a thing or two. Yeah, they seem to get offended by all of the new “internet doctors” people seem to have become, but in this case, we all know better than your mom’s doctor.
Tell your mom to fight hard and prove this doctor wrong.
Jenn

Your Mom needs a DR. now !!! She may not have the time for you too take a day or two, or even longer to hunt for another Dr. We are talking minutes here, and that does not mean hours or days. If it affects here heart like it did mine; she may not even survive while on the ventilator if her heart stops while the Dr. is waiting around. I am so disgusted with stuff like this going on with your Mom. Why, Why, in the world don’t Drs. learn about this in school ? Why, is my sad responce to this so called Dr. It seems like people with GBS are still in the dark ages when it comes to knowledge and the seriousness of GBS. I just can’t believe what is happening. I am praying for your Mother now. Let us know and hope you get her help before you even read this.

Drummer

Jenn I am not being rude by my next comment. I don’t want you to misunderstand this post. Can you give us the site or source of your information that Guillain Barre Syndrome is a VIRUS? We need to correct some of these sites to contain the right type of information. To my knowledge GBS is not a virus it is your own immune system that gets confused and attacks your own body. Maybe here is a good place to add that it can follow a viral or bacterial infection that causes the immune system to be weak or confused. Thanks for being understanding and let me correct this information before another person reads our typo. You are a valuable member here, keep posting. Feel free to correct any of my posts too! I loose it when I get mad and fly around the room on my broom. I vent when Doctors make those mistakes. With us I try to be more considerate! Thanks!

Gene, Your right. I meant 2-5% mortality rate. Sorry to scare anyone. I looked up the place I remembered the Pain rate from: [url]www.uwo.ca/cns/resident/pocketbook/disorders/neuromuscular/gbs.htm[/url]
The pain rate when I looked it up was 85%. This is a great summary of care that is good especially for in hospital acute care. I actually copied this in past to show to my internist and neuro. I did this because one of my hospital neuro’s said he didn’t know why I was complaing of pain because GBS is not painful. He said I was sore because I layed in bed all day(paralysis kinda does that to a person). So I kindly sent him a copy of this when I got home. This is a manual for basic standard of care. Similiar to what we used in general medicine(The Washington Manuel) except it is for neurology. This is a great source for families to copy for those in acute care. It gives a very good summary and Management/initials orders for care.Last updated 10/16/2003. This comes from neurology pocketbook. Also interesting to note: 25-30% have residual deficits with 70% complete recovery in one year. 3% recurance rate. It also gives very specific instructions for care /ivig/plasmaphoresis. It also states that the lumbar puncture may be normal early on 10 % have a normal profile throughout. (my 1st neuro said that I couldn’t possibly have GBS since my 1st spinal was negative). I highlighted that for him and sent him a copy also. My 1st 2 neuro’s failed to read the basic neuro residents manual of care. Maybe this will help families educate their local neuro’s. References are stated at the bottom of the article. Gene thanks for helping. Dr. Shawn

I also really like Dr. Parry’s article on residuals. It was such an eye opener to read it and see that what we experience is “normal” (not that anything about GBS is normal but you know what I mean). It will help when your mom starts recovering, you will know what to possibly expect and will be armed with knowledge before it happens.
With this article, otehrs people have posted links to, plus the amazing info posted here in the forums, you will be better informed and educated on GBS than the majority of doctors.

Im sorry to hear about your mother, yes she is a hero and please try to find another doctor, well my doctors was sure I would not walk again, well Im on my two feet and it is not year since I was DX but it take time, the time and rest is our best healer. Send hugs and kisses from Iceland, love Helga,
ps I will have your mom in my prayers

LrF,
I cannot recommend enough that you get your doctor/any doctor to phone on your behalf to Hopkins, it may take a week or more for them to get back to you otherwise. Any documentation you can send will also be helpful. I have been impressed with Hopkins so far and highly recommend you do your best to get your mom seen there. I will be going back there next Friday for a lumbar puncture and the Friday after that for another consulation – if there is anything I can do or take to them please let me know, you are not far from me.

Julie

Lrf,

There is a thread called “Things I wish They Knew”. Many of the posts are very interesting and may give you a little insight to what your mom may be feeling. Just copy and paste
[B]gbs-cidp.org/forums/showthread.php?t=38&page=10&highlight=Things+knew[/B]

I’m crossing mine too – it’s a very good team of doctors so if they offer you someone else just take it. I wanted the head of the department who specializes in GBS but I ended up with his assistant who was trained by him and was completely satisfied. He called in resources from other departments when there was a question about certain issues so it’s not just one person you are seeing.

I’ll keep my fingers crossed, my eyes crossed and my legs crossed – surely something will work. And if there is anything else I can do please let me know, I have lots of relatives in Martinsburg and Hedgesville who have been bugging me for a visit too. 🙂

Take care and holler at me if you need anything.

I can only say the same as the ones before me and that is “FIND A NEW DOCTOR” and quickly.
Hang in there and keep your strength. You are your Mom’s advocate now and need to be her voice. She must be scared, encourage her, read her these posts. Tell her there are ones behind her and praying(or sending positive energy…)

My daughter has GBS for the last year…

Natalie Bauleke:) 🙂

“I just wonder if one doctor will say another one is wrong. Seems like they all stick together. ”

NOPE! I would not have ended up at Hopkins if one doctor had not continued to recommend I get another neurological opinion. His direct words “well thats AN opinion, if I were you I would get another one.”

I think that is good news that Dr. Cornblath does not actually need to see your mother or feels she should be moved to Hopkins. If he can continue to provide input from afar and direct your current neurologist in testing and treatment then I think you will be in good shape to proceed. This is ultimately what we are working on also – I will not continue to go to Hopkins once we get a firm diagnosis and treatment plan down – I’ll take that all back to my local neurologist for regular treatment and/or monitoring.

I breathe a sigh of relief for you and your Mom, I was a little worried for awhile when they wanted to pull the plug but it looks like things are coming around now.

By the way, I get the Readers Digest large print edition and this month’s edition is full of funny stories and jokes that keep my mood uplifted. Here’s one that made my husband laugh (he is a little dyslexic.)

Did you hear about the dyslexic devil worshipper? He sold his soul to Santa. 😉

Lfr,

I was wondering if your mom has a physical therapist who comes in to do some passive movements for her and checking to see if there is foot drop?

Lfr,

I recall my parents looking shattered and exhausted (well, my mom hid it better than my dad) when visiting me in ICU. I do feel that the toll on the family emotionally is sometimes worse than on the patient. Seeing one’s loved one in a state like that and not being able to do anything, feeling helpless, having to put on a brave face while trying to carry on a somewhat normal life takes its toll on the family.

Very wise to stop or limit visits when your mom is worn out. 🙂

I have been thinking a great deal about your post on Dr. Cornblath ……. Firstly I was a little confused, however, having taken the time to think more about it, I do understand. I feel that the [B]most important thing was that they were in contact with, and spoke to him[/B][B].[/B] There probably wasnt much he could do exept what he told them and the main thing was that he [I]was able to explain to them what to expect,[/I] my biggest worry of all, make them realize that being on a vent for a long time is sometimes the “norm” for GBS patients who are paralized. Besides the nerve conduction there isnt really much more they can do unfortunately, and it is more of a waiting game to some extent – that is what I feel he probably expressed to them when speaking to them. I know exactly what you mean about being left in the dark!!! its soooo frustrating, and I dont think they realize how distressing it is to the family.

Its wonderful that you found the forum and were so proactive, you have done an amazing job for your mom.

Please keep us all posted. I cou;ldn’t believe what that so called doctor told you and your family. I myself was way ‘out of it’ for almost a year before i started to come around, but 20 days! UNHEARD OF! We all are praying for you and your mom. I hope you have recieved intervention by now! Stay in touch, Carol J

GET YOUR MOTHER TO A TEACHING HOSPITAL FAST!!! John Hopkins, Pittsburgh, Mayo Clinic! To think that in this day and age a doctor would be so ignorant about GBS is frightening. Most of us on here would not be alive today if we had not been on respirators. I had GBS 31 years ago and there was no treatment. They just tried to keep you alive. GBS is a frustrating, hideous illness but in the vast majority of cases, you do get better. And nerves heal. I was told that I had extensive nerve damage but that in time the myelin would grow back and I would be “normal.” Yes, I have problems, but good gracious…..I have raised two wonderful children, have grandchildren and for 20 years owned a business with my husband. I walk and on good days can even jog a little. Find someone who knows how to treat GBS. You must speak for your mother since she cannot speak for herself. God Bless!

LrF, Can you get another neuro for your mom? at the same hospital, one who doesn’t have the bad ego problem! Obviously he isn’t concerned enough to be the right dr for her. That is great news that she is being soo positive, smiling and comfortable. Keep up the great positive attitude-both you and her. What a strong Mom you have. Keep the news, good or bad, coming. Take care.

YAY!!!!! I am so glad he is keeping up with the case. I think it was a matter of your doctors, as you said, not communicating with you properly when telling you about their conversation with him. I have not met Dr. Cornblath personally, but I think i did mention to you he is on the medical board of the Foundation and does speak at the conferences. I will be meeting him at the end of September as we will both be speaking at a medical conference, I have been told he is a really nice guy.

lrf,

thx for the update. pls keep us posted. take care. be well.

gene gbs 8-99
in numbers there is strength

How did you hear about this group? do they have knowledge about gbs patients? Go with your instincts! Give your Mom a Hug for me! Take Care.

LrF, please listen to your internal voices, feelings, don’t second guess anything. Make your feelings known to your family, the nurses taking care of your Mom, everybody. Maybe it will keep them on their toes as far as treatment and care goes. Who is giving your Mom her pt/ot therapies? She needs that everyday, for short times each, just to get her moving again. Is there anyway of getting your Mom into another hospital where they know how to treat GBS patients? Take care of yourself and Hugs to All of you.

I have been sitting at the computer, just staring at the screen, at a total loss for words. I dont know what to say or where to begin and feel so very frustrated 😡 . Praise be to the PT, thank goodness for her input and thank goodness she had the tenacity to show your Dad what is going on. THIS is what happens when patients start their long journey to recovery. Honesty, your moms case is not one of an unusually long time on the respirator – there have been much shorter by far, [B]but[/B] there have also been people who have been on much much longer. I feel drained (I really do because I was hoping she was going to get better care) because I dont feel that many of the doctors are handeling this as a GBS case, they probably have no idea how to handle a GBS case and arent willing to even try to find out more than what they read on the internet (which is not much). Im so sorry your Dad and you and the rest of the family are having to deal with this horrible rollercoaster because of ignorance.

LrF ~ keep listening to your instincts! [I]Do not let [/I][I][U]anyone[U][I][/I][/U][/U][/I] stop seeing your mom as a living person who will improve. No one can tell you how much but [I]she can get better[/I]. Just look at what the PT showed you. Her body is beginning to heal 🙂 Oh, it will be slow, most likely, but I can tell you from personal experience ~ I am 12+ years and still finding little things I can do easier now than last year. I get surprised when I can look at my husband and say “I couldn’t do that for the past 12 years, could I??” Those who “knew” said that I wouldn’t make it to 5 years post and here I am, 7 years beyond that! It wasn’t easy many times but the point is, I am still here and getting to be a part of life ~ seeing grandsons born, attending my daughters wedding in 4 weeks, holding my husband’s hand.

[B]Be your mom’s cheerleader[/B]:D We are here for all of you. Hugs all around!

OMG!!!! First off, HURRAY!!! MOM!!!! You go Girl!! 😀 Thats the way I found out I could move-with my pts help, only my right side came back slower then the leftside. Keep up the motion, Dad, and other Family members, when she is rested.
Second, CHANGE DRS! and PULMS-get someone who knows ALL about GBS!!! NEVER EVER Give Up on Your Mom!! and Don’t Let those who say to ANYWHERE near Her!!:mad: She will be ok, sure it will take some time, but it will happen!! She might be on the resp for another day or another year, it doesn’t really matter in the Grande Scheme of things! Time is thrown out the window when it comes to dealing with and recovering from GBS. Your Mom will recover. Go with Your Gut Feelings, You were given those feelings for a reason, don’t ignore them. Do what is right for your Mom. I understand how frustrating this whole situation is for you and All your family. I wish there were more options open to your Mom, as far as Drs go. You and your Dad are doing a Great Job of being Your Mom’s advocates, Keep It Up!:) Keep The Positive Attitudes Going!!

Lenny, [COLOR=red]WOW!!!!!![/COLOR][COLOR=black] that is such Wonderful News!!! I’m really Happy for Her!:) Please give Mom a [/COLOR][COLOR=darkorchid]HUGE HUG[/COLOR][COLOR=black] for me![/COLOR]
Sitting in a chair for short times in the beginning will do wonders for her, as long as it is only for short periods at a time. It works her core muscles, which is what is responsible for everything else in the body. It is the starting point of All movement, except maybe the fingers:rolleyes: The sooner she is able to sit the sooner she will be off that vent/respir.
Thank You for making my monday a [COLOR=lime]Brighter[/COLOR][COLOR=black] one!!:D Take care.[/COLOR]

I have the meaning of slow that everyone can understand without giving a specific time in days, months and years. Slow is best described as NOT AS FAST AS WE WANT IT TO HAPPEN! Healing has some very different levels. You are working with keeping the mind possitive. You are waiting for the nerves to heal before they can get that signal to the muscles. You will also have to wait for the tendons and ligaments to stretch. Weak muscles are the major souce of pain. Any weak areas will cause you to wince and groan when just thinking of moving them. Sitting exercises each day will help with balance and standing and walking. It is a slow process, but your Mom is heading in the right direction. She will face some ups and downs and you all will be frustrated but remember to keep it possitive in the grand scheme of things she is improving slowly. Don’t give up and don’t let her give up! Brag about every little piece of progress! Celebrate each move. They are working on movement first and she is doing great! Range of motion will come later as she gets stronger.

LENNY ……….. What wonderful news, like music to my ears 😀 ! Well done to your mom for all the hard work. I also just wanted to mention that you have been so strong and such a wonderful ‘voice’ for your mother, when you came on the board and we basically shouted at you to not listen to what the doctors were saying (not really shouted, but you know what i mean), Im so glad you came back and werent too overwhelmed by what we said.

Keep the good news, and the setbacks, coming.

Lenny,
What great news, I am happy for your family!
Dawn Kevies mom 😮

Lenny ~ how thrilling! Please give your mom a big hug from me 🙂 I’ll say it again, never give up and don’t listen to those that “nay-say” 😀

That’s really wonderful news Lenny, I am so relieved. It sounds like you’ve got the right people fighting for her quality of life, aside from the Pulmonary dude. Keep posting so we can see how much better she is doing.

Julie

Reading through your forum I have seen there what your mother and my father are experiencing has a lot in common. She was actually diagnosed shortly before before my dad. It’s an emotional rollercoaster for everyone. I just hope this disease passes soon. I’m sorry to hear about your mother.

Lenny, I’m sorry to hear Mom is having such a rough go of it right now. Please know she is in my thoughts and Prayers. Does she have epc cuffs on her lower legs? They are a must since she spends more time not moving then she does moving around. and especially now since she has a clot-they are the most important device next to the respirator at this time. Getting injections in the belly for clots is normal for gbs people also. Stay positive and please take care of yourself, for your Mom’s sake.

Lenny, The sight can be affected by gbs, mine was. In time that will also diminish, might flare up now and then especially when she is tired. I bet she really enjoyed seeing her Grand kids. They can have such a positive effect on her recovery. Keep up the Good work!:) She’ll get through this rough spot. Please make sure your Dad is taking care of himself also, she wouldn’t want him to get tired out. Take it easy.

I’m sorry to hear that your mom isn’t doing too good. I think me and my sister are right up there with you dealing with my father. Well he got a blood clot in his right arm on Sept 13th and has been on blood thinners since then. His arm was huge and looked really bad, but as of now it has went down tremendously and continues to go down. I wonder if this thing with being so hot is common in GBS patients because my dad is the same way. He always wants us to wipe his body with a wet wash cloth and yesterday I took a battery operated fan to him, but the nurses wouldn’t let him use it so we had to fan him. My father gets very frustrated very easily, but he is also so happy when he sees his grand kids as well. Have they said anything to you about putting a trache in her and taking her off the ventilator? The doctor said he wants to do that to my dad in the next few days because he said if they continue to leave him on the ventilator with the tubes in him they are concerned that it could cause permanent damage to his vocal cords, etc. Well I hope everything gets better and trust me I know how heart breaking it is because me and my sister are experiencing that right now also.

Are they going to move her to another hospital or rehab? Have they talked about getting her off the trach. I know I have read in your previous postings that the doctor said it will be permanent is that still what the doctor is saying and is she able to talk with that? I’m so sorry about the financial situation we don’t have to go through that because of my father being a veteran. I do know they don’t want to take responsibility for nothing in fear of being sued, but in reality they are responsible no matter what.

Being overheated / hot is definitely something that goes along with GBS. Do a search on “Things I wish they knew” in the Main Forum. When in ICU they covered me with a sheet, however that was far to hot, so my dad asked for a pillowcase and it covered from my chest to just below my groin – it helped a little with the heat. Some really interesting posts.

This is the first time in 21 years that I have shown this photo to anyone besides my family and a couple of very close friends. ICU with pillowcase to cover and have a little dignity. Trach and feeding tube, its a pity you cant see the horrible plastic booties they made. My feet were the only things that felt like blocks of ice, everything else was overheated.
[IMG]http://i207.photobucket.com/albums/bb45/aliwills/AliHospital.jpg[/IMG]

Ali ~ you are such a brave person! Thank you for sharing with us such a painful time in your life. You have proven that anything is possible and just because someone has book knowledge doesn’t mean it’s so. Hugs, Judi

Hi Lenny , it has been a LONG time since I have been to the GBS site. My mom was in her 70’s with her GBS and also paralyzed from nose down, on vent etc. That was Oct.12th 2004, she is now home with dad, using a walker, talking, feeding herself , able to get up from chair on her own with walker in front of her, and ALIVE ! She has nerve damage but she is still able to enjoy life with her family. There are days she is depressed but she made it and is her to see her grandchildren grow up and many visits from friends and family. Life is so different than what mom and dad thought it would be for their ” golden years ” but some of the doctors were wrong, mom did get off her resperiator too and a few told us she never would ! your mom sounds like a fighter like mine, don’t give up , my mom didn’t and she is here today loving and laughing with her family.
Jodi

Lenny, don’t let that place get you or your family’s hopes too low. For one thing, GBS is known to come on in a very short-acute time frame-that is what makes it different from cidp. Secondly, 3 months on a vent is doing good, there are some people who were on the vent for 1 year to 3 years and still came off it and continue to live a near normal life. Don’t take what they say to heart and please don’t let them tell your Mom anything that negative! Its NOT true! as for her age, there again they are wrong, there are older people who go through gbs and recover to a new normal life, there are also younger people who don’t recover, it is really an individual syndrome. I would really like to meet those negative people and teach them a few things!:mad: Your Mom is making small Big steps in the short time she has had to recover. She is doing just fine. Please give her a Big Hug for me. I can imagine how frustrated you and your family are, just know your Mom feels it also, stress can be felt and she can read it in your face. Take care, and punch a pillow when you need to.;)

ali,

ditto judi. a brave & healing move. re: the dignity part; i was in soo much pain that, even though raising my knees up exposed myself to anyone at the bottom of my bed, i was aware of it & didn’t care cuz it eased the pain. when my infectious doc walked in he discretely put an extra sheet over my legs. the things you remember… take care. be well.

gene gbs 8-99
in numbers there is strength

Judi, I think when you are younger you tend to be a little more resiliant and bounce back easier, unfotunately i dont think its brave as I did ‘run’ away from it for so long. Thank you for your support over the past couple of years!

Gene, i’m sure it is a healing move, im going through all the motions I should have gone through when I was 19 and 20. It is amazing the things that you remember when someone mentions something forgotten.

Ali, your picture just about made me cry. I didn’t take any of Ben when he had GBS because I didn’t think he’d make it, and I didn’t want those pictures to be my last of him. Thanks for sharing!

Lenny, my fiance Ben was “only” on the vent for three weeks and had a very slim chance of surviving due to a very bad infection that threatened his life along with the GBS. After it was evident he would survive, he was “supposed” to be confined to a wheelchair for 1-3 years, but was walking again after two weeks. Never give up hope and keep fighting for your mother. You’re doing a great job!

–Shannon

Hello:

Allow me to voice a response. Everyone is correct. Do NOT give up on your mom. Please call the office at 610-667-0131 and we can talk about your options to deal with this issue. Our office hours are 9-3:30 Eastern time.

Barbara Katzman
GBS/CIDP Foundation International

Thank you for the update Lenny,

It is such good news about the period off the respirator. I know its frustrating, but these little steps are wonderful.
I met some wonderful staff from Mount Vernon Rehab Facility on Friday, they really seem to know their stuff when it comes to GBS – I’m not sure what the criteria is for choosing a Rehab facility on Medicare. If Mount Vernon is an option, I would suggest you strongly consider that, and its also not that far from where you are If I remember correctly.

Thanks for the update Lenny. Your Mom is in my Prayers and Thoughts. Don’t feel bad about only seeing her once this week-she would want you to support your kids like you are doing. She also knows and appreciates All your support of her. As long as she has all those infections in her system, she will probably be out of it for a short time, you’ll notice an improvement in her mind after she fights the infections. Just a side effect in a way. Sending you and Mom Big Hugs!:)

I’m glad to here that you mom is able to eat and drink a little more. I will keep your mom and your family in my prayers. Trust me I know what you’re going through because I’m going through the same thing and at the same time with my father. It really helps me and family to pretty much know what we could possibly be facing. Right now my dad is on the trach and was put on it last Thursday. I really hope that he will be able to eat and drink soon and show a big progress. I know I’m asking too much, but I’d like to think that way because it helps me be the strong one for the rest of our family and for my dad. Please keep me posted and let me know how everything goes with your mother.. I’m very anxious to know how she’s doing.

Thanks,

Sabrina

I read on Sept 24th that you said your mom has been on the trach for 3 months but wasn’t she diagnosed on the 28th of July? Has she been on the trach since then and I’m assuming that she is still on it since she’s on the respirator right? Thanks for the helpful questions that we need to ask and if you can think of anything else please let me know.

Thanks,

Sabrina

Lenny,

I just had to say I admire your courage and your eagerness and fighting that you are doing for your mom. I am dealing with a very sick mom myself…she has cancer and is giving up. And while their illnesses are different, I know the pain that comes with watching our moms go thru so much undeserving misery. As all have said, and as you are doing, never give up…and stay strong.

Best wishes,

Stacey

Lenny,

I’m curious as to how your mom is doing?

Sabrina

I’m so sorry to hear that. She was just beginning to eat and slowly drinking. I wonder what happened please let me know what the status is when you know. I just like to know what could possibly happen next to my dad if it does because the events that are happening with your mom and my dad are so close. My dad is also having his good days and bad days. He was depressed alot on Sunday, Monday and Tuesday. Yesterday he was in a better mood according to my sister. She said that today he was off the vent and breathing on his own for 2 hours and 15 mins and he started a week ago for only an hour so they are slowly increasing the time. The RT says that is process for weining him off. Also, sometimes they deflate some balloon thing that is connected to his trach so that he can speak on his own but he only does that for maybe 10 or 15mins cause he gets too tired. I assumed that after going thru the vent and trach and then the recovery would start and would continue to go up hill from there. This healing process that takes time I think is the hardest and most hurtful part for me. Please let me know what you find out on your mother I sure want to know what happened and why it happened.

Thanks for your response. I’m sorry about your mom getting worst and I will keep you and your family in my prayers and thoughts.

Sabrina

Lenny, Sorry to hear the bad news. Those bedsores can take alot of time and energy to heal. Thats why gbs patients need to be turned every 2 hours 24 hours a day. The care isn’t there enough. I’m sorry your family has such a struggle infront of you. Hang in there, things will get better for your Mom. Keep a short leash on her caretakers, squawk if they go too far. Your Mom and the Rest of The Family are in My Prayers.

Lenny, thats a good sign, that your Sweet Mom is asking about others. I would do that to my family, they would just change the subject at first, then I started asking my 14 yr old daughter what is going on with the outside world-she was the one who told me about a relatives death the day before-not a good thing to withhold information from the patients. I hope you answered her inquiries honestly. As for the mind, when you are laying there not able to interact with the outside world, timewise, everything seems to run together-no seperation from one day to another-even with the nurses telling you what day it is-they don’t keep you updated nearly enough. Thats why keeping a journal is important, so when your Mom asks about this and that and when did this happen or that happen, you just open the journal and read it. to this date I have to ask my hubby or parents when this happened or when did they do that to me. do keep an eye on her emotional state and look for any unusual signs-like stroke signs and soforth. You can always ask the caretakers if it is unusual seeming to them, get others’ opinions.
bedsores are hard to heal, especially if they aren’t debriding them properly and turning her like they should be. Its really important for the caretakers to treat them 24 hours a day.
pt everyday in the am and pm should be done continously for your Mom. to keep her motion going and help in her future recovery. Please give your Mom my best and give her a Big Hug for me. Take care.

Lenny,

I’m so sorry to hear that your mom is feeling so bad. You’re in the same boat that we’re in right now. My sister called me yesterday and said that when she got to the hospital that the nurse said my dad wanted to talk to her with the nurse there. The nurse deflated the thing on his trach and he started telling my sister that he is giving up. He has been strong for almost 3 months now and he still can’t walk or anything. He is tired and in pain and we don’t know how he feels. My sister started to cry and he told her I’m not telling you to hurt your feelings, I’m telling you because you’re the oldest and you should understand. Anyways, he said as soon as the doctor gets there this morning that he is going to talk to him and tell him the same because he is tired of being on the trach and vent and not being able to walk and having other issues. I go to the hospital 5 times a week and I’m going early on Friday to talk to the doctor as well. Is there any questions or suggestions that I should throw at him? Just a short summary of his condition currently if you have forgotten. He is currently is ICU on the vent and it’s breathing level is at a 6, he’s has the trach. He has gained alot of strength in his legs when we move them back and forth. He’s on the blood thinners. Anyways, what can we say. It would be great if someone could give us some feedback on what to do. I’m going to see him tonight. Please know that I do have you and your family in my thoughts and prayers.

Sabrina

hi lrf,

when my hands tried to fall asleep, i’d shake them vigorously. it helped for a minute & then i’d have to do it again. take care. be well.

gene gbs 8-99
in numbers there is strength

I’m glad your mom is doing better

Lenny, My fingers are crossed for Your Mom and her new temp home. I hope they keep up their good attitude and care. Way To Go Mom!!! Sitting up, cutting back on tubes, and talking-That is Huge!!!:) Keep Up That Great Attitude Mom!!!:D She’ll be Home Soon! Lenny you know We wouldn’t Tell her what You tell Us!;) Please Give Your Mom A HUGE HUG for Me!!
My hands still have that feeling, it is normal with this stuff. Neurontin or Lyrica or even antidepressants will help control her pain. Its important to get control of the pain, it is real and it will drain her energy like leaving the lights on on your car after you turned the key off. Not good to have pain. As she gets healing she might have increased pain and tingles, its her nerves waking up and trying to reroute themselves. Physical therapy/ot is important to train the nerves to come back correctly. Not too much or too long, no pushing recovery too fast-it doesn’t work that way. Just remind your Mom that gbs stands for getting better slowly, and she is doing just fine. Take care.

lrf,

some are too hot, some are too cold, & some are just right. i was like your mom. her autonomic system is out of whack [very technical term – lol]. UR doing the right thing. take care. be well.

gene gbs 8-99
in numbers there is strength

Lenny,

Dr Cornblath told me that with GBS the body normally has the inability to sweat – He mentioned that in many cases where a patient is left in the sun which causes the system to overheat even more.

EDIT : I went to visit a patient last week in the ICU and they allowed her to have a fan in her room. She was then moved to Georgetown Hospital ICU and they refused to allow the fan as she was with someone else in the room.

Glad to hear your mom is doing better. I have been following her journey through your posts — thank you for letting us know of her progress! Sounds like she is in a good place and making huge strides in her recovery. Thank you for being such a great caregiver and supporter for her! Patients really need encouragement from family and friends. Tell her we are all cheering her on!! 🙂

Wonderful 😀

Good for her!!!!

Lenny, That is Wonderful News!! I bet you were soo happy to hear her talk to you. I’m Soo Happy for All of You!:) Huge Hugs!!!

now your Mom can really Tell Off that dr who gave you such bleak news at 20 days!!!!

Hi: please get another opinion, being on a resp. does not mean the end, There have been many of us that were placed on one and recovered. Don’t give up and please get another opinion.

Lenny,

I haven’t seen you post any update on your mom in a while so I was really curious about how she is doing?

Sabrina

Lenny,

How are you and your mom and family doing?

God bless.

I’m so so sorry to hear that, but I am still praying for your mom and family.