Looking for any/all opinions
AnonymousMarch 17, 2009 at 12:14 pm
First of all, thank you to everyone for sharing your stories, it’s very nice to know that there really is such a well established support group for GBS/CIDP!
Overall, I’m just curious to hear anyone’s impression on how we’ve been handling my dad’s care/recovery based on your experiences. So here’s his story up to now:
My dad was diagnosed with GBS back in the first week of October 2008. In hindsight, the ball was dropped rather frequently in the onset of his GBS. First he went to the ER who promptly sent him home saying “you may have GBS, come back if you have difficulty breathing”. Needless to say, he was back within 48 hrs. From there it was 5-7 days before IVIg was started. By this time (about a week from the onset) his symptoms had gone from the numbness in his feet/legs to complete paralysis from the neck down. About this time, he needed breathing assistance and about a day or so later he had to be intubated. By the time the IVIg was finished they had already preformed a tracheotomy and rushed him up to a skilled nursing facility.
Since he’s been there, his condition has taken some big ups and downs. When he arrived at the new facility he was practically comatose. My wife and I (who live in New Mexico) were back in town and found out that we could communicate with him by asking him questions and having him blink once for “no” and twice for “yes”.
[I’ll skip over much of our frustration with this facility who kept insisting that he was “unresponsive” after we’d just been talking to him for 20 mins]
By the time late Nov/early Dec rolled around he’d regained some motion in his hands and had nearly complete control over his facial muscles. He was still on the vent but he even had enough strength to allow them to put in a device to allow him to speak through the trach. Then about Dec 13-17 something [that’s our big question right now] happened. All of a sudden, he started losing the little motion that he’d regained. As of today, he can pretty clearly use our “blink code” to communicate with us, but big facial movements and all extremity motion is out. The fortunate part for my dad is that his lungs seem to be work great (the supporting breathing muscles…not so much, of course) based on the fact that the vent is almost pushing ambient air in without too much additional oxygen. And above all else, his spirits are extraordinarily high, and have been throughout this whole ordeal. I can very obviously see that if other things are failing him, his spirit/attitude is pulling him through.
So, at this point, we’re wondering what that “something” was. We didn’t see it much at the time, but looking back, mid-Dec was really a turning point backwards. The neurologist consultant on my dad’s case is insisting that another round of IVIg or an initial round of plasmapheresis wouldn’t do anything. As my family and I have been reading around, we’re wondering why they’re not willing to try it. At this point, we’re considering if we shouldn’t be much more insistent. Anyway, as you read this, I’m very interested to know how this compares to your experience, is there anything that you read and wonder “why haven’t they…”, or any insights you’d be willing to offer. Thanks in advance and thanks for such a great support group!
AnonymousMarch 17, 2009 at 3:06 pm
I’m sorry you guys had to deal with less than knowledgeable medical staff. I wish I could assist with your questions; however I was diagnosed with GBS quite a few years ago and only recently found out about IVIG treatments. As such, I really don’t have any information to share. I’m sure others with CIDP can probably give you more insight.
I recently spoke with a young lady diagnosed with GBS and they only gave her one treatment of IVIG, which is odd as she’s still having problems.
I’m sure your questions will probably be answered shortly and you’ll receive great advice as well. You dad and family are in my thoughts and prayers.
AnonymousMarch 17, 2009 at 7:03 pm
I have CIDP not GBS. I was slowly but steadily going downhill for several months and the deteriation really accelerated in the month before starting IVIG. I improved with my first dose but it took about 7-10 days to see ANY improvement. The next two months I was given a reduced dosage. I maintained but did not improve during that two months. When the IVIG dose was increased back to the load dose I started improving. I saw my biggest improvemnet in the next three months. I would say if your father saw any improvement after his first dosage, it should be continued. And they may need to increase the dosage or decrease the interval. I had expected almost complete improvement on my frist dosage. I was a little disappointed in the slight improvement but there was improvement. After my third dosage the doctor went back to the load dose and then after a few more months the intervals were reduced from every four weeks to three weeks. In the Infusion Center where I go, we are all on different dosages and intervals. But, we are all receiving IVIG and I hear many stories of improvement.
AnonymousMarch 18, 2009 at 12:25 am
Welcome to this group. I have a few comments. First, it is REALLY surprising and dangerous that he was sent home with the instructions just to call if there were breathing problems. That might happen if there were several weeks of slow symptoms before that time, but it is generally considered a medical emergency and definite need for immediate hospitalization when someone has only a few days of symptoms that are still progressing. This is because people can deteriorate very fast with GBS and also because there can be autonomic instability (changes in heart rate and blood pressure) that are life-threatening as well as the fact that the respiratory “failure” is due to weakness in the muscles of respiration so that people do not breath well enough. If you do not breath well enough, you cannot compensate when you start to fail and inadequate breathing (ventilation) can lead to build up of carbon dioxide even faster than drop in oxygen. Carbon diaoxide build-up makes people sleepy-so people can die at home of respiratory failure if there is not monitoring of the ability to breathe.
It is also a bit shocking that your father got a trach this fast and was transferred to a skilled nursiing home this fast. Again this sounds more like decisions being made for hospital/HMO/financial reasons rather than the best interest of your dad. There is a lot of unknowns about this disease including appreciation of the medical changes that can occur with it and the need for close monitoring and medical intervention in order to help minimize long term sequelae. A lot of people think that there is always full recovery and that you do not need to treat with IV IgG or plasmapheresis. The doctors that are most expert in this, advocate for intervention. Two of the “much needed areas of further research in GBS” are wheither it makes a difference to give IV IgG in “mild” GBS and whether to give a second dose of IV IgG. There are actual clinical trials ongoing for the latter. When someone is intubated and cannot move from the neck down, there is no question that this is “mild” GBS and this person should get IV IgG. At the symposium, the consensus was that if people remain on a ventilator or with significant weakness/paralysis, they should get a second dose of IV IgG. It is hard to regain use of breathing muscles after a long time on a ventilator, so it is better to be “aggressive” to try to get people back to breathing on their own and moving on their own as much as possible. I very strongly would suggest pushing for another immunoglobulin treatment. It might not make as much difference now as it would have in December, but it could still make a difference expecially since there was “backsteps” in recovery.
Regarding what the something was that lead to a reversal of progress, this might be many things–that the first dose of immunoglobulin “wore” off or that your Dad had a virus/immunization that caused a “flare” in the immune reactivity. Normally the antibodies in GBS get high at the beginning and then whatever was the trigger for the autoimmune reaction is gone, steadily decrease. Sometimes, there can be a second boost in the production of antibodies and sometimes the underlying disease is really CIDP and not GBS at all–just a very severe onset.
AnonymousMarch 20, 2009 at 11:59 am
The what brings back fresh memories for me,our daughter had somewhat a similiar thing happen she was diagnosed after a bounce back to the ER after her first IvIg treatment she had movement in her feet so the moved her out of ICU to the stepdown unit and with in a matter of hours she lost movement in her feet again,then her hands and finally her breathing started getting difficult so that night they moved her back to ICU where they started pp treatments but she still went on the vent for awhile,I asked her neruologist what had happened and why she went backwards,he told me that he was surprised when she showed movement in her feet after the first round,but that the GBS had not fully made it’s way through before leaving,and that the iViG had only slowed it.This I hope helps in a way, your father and my daughter were diagnosed within weeks of each other,jjust know that it will be a roller coaster ride but it will get better.
AnonymousApril 4, 2009 at 10:16 pm
Sorry your father is having so many problems. Have you contacted the liaison in your area? We have a info packet that can answer many of your ?s. It is free of charge. Contact the foundation by email or phone. Also we have ‘communication cards’ that are $20.00. If you can not afford these, try writting common ?s such as ‘pain’, hot, itching, ect on a poster board. When you point to common sayings, he can blink his eye’s yes or no.
AnonymousJanuary 14, 2010 at 1:44 am
My sister has been unable to speak for about a month now. She is completely paralyzed except for her eyes being able to blink.
She can tell us a lot with our system. maybe it can help you.
She closes her eyes. We say “Vowel?” (if it isn’t she keeps them closed)
we split consonants up with the midway point being “m”.
If its not a vowel we say “beginning?” if it is she opens her eyes.
Then we begin. “b-c-d-f-g”…she opens her eyes. The first letter is “g”.
Then we start again.”Vowel?” she opens her eyes.
“a-e”…she opens her eyes. The second letter is “e”.
We begin again. “Vowel? (nothin) Beginning? (nothing) m-n-p-q-r-s-t” (she opens her eyes). “Get. is that the whole word?” She opens her eyes.
Then we start on the next word.
It is time consuming (but as she says, she’s not going anywhere) and sometimes we get messed up, but we’re getting better at it!
We try not to guess the word she is trying to say because then we get more confused. Just give it a try! Let me know how it goes!
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