cronic GBS
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September 10, 2006 at 7:19 pm
I’m new at this forum thing, but I’m eager to try it out…my mom was recently (July 2006) diagnosed with GBS at 60 years of age. She had a severe asthma attack and pnemonia, and was also diagnosed with brittle asthma which evidently led to her GBS. She is not a ‘typical’ case at all…even has a lot of doctors scratching their heads. Her paralysis came on quite slowly…it took days for it to reach her waist. We got on it, and she received the plasmapheresis treatments and steroids which seemed to work well. Her blood type is incompatible for the immunoglobulin treatments. She went through physical and occupational therapy for about 2 weeks and seemed to be improving. She came home, and they weaned her off of her steroids. As soon as the steroids were out of her system, her symtoms started to reoccur more severely and more quickly. She immediately returned to the hospital and was put on the highest dosage of steroids. I cannot imagine what this is doing to her organs. She seems to be improving a bit now, but she has been diagnosed with ‘cronic GBS’ which means she needs some kind of treatment for the rest of her life. They are looking into plasmapheresis or chemo therapy on an as needed basis. Has anyone else had experiences with CRONIC GBS? Could you tell me about it? Treatments? Options? Care? Recovery?
Thank you….Stephanie -
September 10, 2006 at 7:45 pm
Hi,
Welcome. Cronic GBS might get a new name soon from her docs. Try the CIDP side of this forum, and run it by them. You might find many simularities.
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September 11, 2006 at 8:59 am
That is right, there is no thing as chronic GBS. It sounds like CIDP?? But I am not a doc so it could be something else too?? Talk to the doctor today and ask for clarification. Best of wishes to her.
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September 11, 2006 at 10:20 am
I have also heard many times before that steroids do not help, or shouldnt be given to GBS patients, but Im not positively sure about that. It could be a possibility that the reason they were helping was because she [B][I]may[/I][/B] have CIDP.
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September 12, 2006 at 3:47 pm
actually there is such a thing as chronic gbs-its called aman. i have had 4 full and 2 partial paralysis events since aug 05. and steriods usually are not used for gbs cases. hope you can get a correct dx soon, and treatment to help. take care.:)
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September 13, 2006 at 12:12 pm
Dear Nalu,
I am not a doctor, but I have researched GBS/CIDP for 9+ years. I have not read, other than pregnancy with the mother having a different type blood than the baby, any blood type restrictions on IVIG. IVIG is a solution of globulins containing antibodies normally present in adult human blood. Globulins are simple proteins that provide immunity against disease. A protein is made up of several amino acids, which are the microscopic building blocks that make up all cells. And, in my opinion, IVIG should be used on your mother immediately, because she received plasmapheresis and relapsed – streoids have not been proven…and are probably useless at this time, the progress she made was from the plasmapheresis…again, my opinion.
The standard Rx for IVIG is 2g (grams)/kg weight. Ex: If your mother weighs 154 = 70kg x 2 = 140 grams, and is usually given over a 5 day period = 28g/day. Nearly all brands recommend pre-med with Benadryl and/or Tylenol. [B]Infusion is very important.[/B] Should start with no more than 30Ml/hr for 30 min. If all vitals are ok, then increase infusion to 60Ml/hr for 30 min. If all vitals ok, then increase to 120Ml/hr for 30 min, then to maximum 150Ml hr. Do not let the infusion increase more than 150Ml/hr.
You may want to look for a more experienced neurologist…again, my opinion.
Yes, there is a chronic GBS…right now your mother has it.
Warmest regards.
Jethro
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