AnonymousJuly 9, 2008 at 2:51 pm
My wife was first diagnosed with GBS 3.5 weeks ago. It was a very acute onset 2 days to paralysis and 4 days to ventilator. After nerve studies she is now diagnosed with the variant form AMAN. Does anyone have any experience with this, we have seen very little change in the last 3.5 weeks. How long have people been on the ventilator?? Any info would be appreciated. Thanks Peter for my wife Mari
AnonymousJuly 10, 2008 at 12:10 pm
I’m not really sure about respirators. I did read up a bit on AMAN & read that most people do recover from it. It seems to be fairly common among children in China.
Did she have food poisoning or a weak stomach before getting sick? AMAN is reportedly associated with C. Jejuni bacteria which is a form of food poisoning.
What treatments has she received? Did she get a course of IVIG?
I hope your wife feels better soon.
AnonymousJuly 11, 2008 at 5:33 am
i didnt have aman but i also had acute onset – paralysis in 24 hrs and vent in 48. I was intubated / on respirator for 2 weeks then had a trachy for 3. Once i had the trachy i was weaned off the vent, probably breathing on my own around week 3. I guess it depends on how long it takes your breathing muscles to regain strength.
AnonymousJuly 12, 2008 at 9:18 am
thanks everyone for your input, this is the end of week 4 on a ventilator. As of right now only a small incease in Maris tidle volume. She did get this from drinking raw milk than contained campylobacter. She tried it once , a little pressure from some friends in the medical community. I hope to see some improvement soon. Peter for Mari
AnonymousJuly 15, 2008 at 3:53 pm
I was on the vent in about 48 hours…..spent almost three weeks on it. I was weaned a bit too early and after extibation, had to be re-intibated around 20 hours later.
Make sure that everyone has a full set of up to date wean parameters. I am under the impression that the weekend people saw an opportunity to get a patient off the vent, and failed to get the job done. I was extibated the first time on a Saturday morning……re-intibated and on the vent for another week. All without a trach….talk about a sore throat.
Take care, and be safe. And take good care of yourself.
AnonymousJuly 21, 2008 at 1:17 am
two of my son’s have been on respirators, the older one just once for almost 2 weeks but my youngest has been on one about 6 different times. The longer someone is on one the harder for them to come off and a higher chance of infections in lungs especially but make sure that they do not try to wean her off too quickly because that can cause her to go back on it. My youngest was on a resp. for 12 weeks at the longest span and that is hard but he never had to go to a trach thank goodness, he had had over 2 dozen surgeries by then. I am sorry but I don’t know about aman. My prayers are with you and your wife and hope she does better soon!
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AnonymousMay 8, 2007 at 11:00 pm
We just had another EMG for my 4 year old who was diagnosised in October, 2006. Her doctor believes that she has the AMAN of GBS. Does anyone know anything about this, or has anyone suffered with it. She continues to walk with a walker, making very slow progress. Any responses would be greatly appreciated.
AnonymousMay 9, 2007 at 9:58 am
what her doc means is that she has axonal motor nerve damage which takes extremely long to recover from. it also means she is in no pain. this is established by looking at the f & m waves of the ncv part of the emg test. these tests can be hard to read correctly, but due to her slo recovery it is possible. do not worry. improvement can continue even decades after a gbs attack. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousMay 9, 2007 at 11:31 am
If you have contacted the foundation, hopefully you would have been sent the Spring 2002 Newsletter. If not, there is an article called [B]GBS, CIDP or What? and what does it Matter?[/B] [I]by Richard Huges, Professor of Neurology Guy’s Hospital, Kings College London, UK.[/I]
I will take a few exerts from the artical :
[quote][B]Acute motor axonal neuropathy[/B]
…… These patients arevery similar to ordinary GBS in having rapidly developing weakness andlost tendon reflexes but they do not have any loss of feeling. As in AIDP, the cerebral spinal fluid (CFI) protein is increased, but the neurophysiology tests are different. They show normal nerve conduction speed whereas the speed of conduction is slowed in AIDP. These and other features inducate that it is the anxons and not the myelin sheaths which are damaged in AMAN. Post mortemstudies of pathology establish that the axon and not the myelin sheaths are the target of the immune attack.
These patients usually have had a preceding Campylobacter infection. Campylobacter is the commonest cause of diarrhoea throughout the world. On its coat it has a special sequence of sugars called ganglioside GM1. The axon has the sameGM1 sugar pattern. Consequently when the immune system generates antibodies against GM1 on the Campylobacter these antibodies are able to attack the axons and cause the axons to degenerate. We also encounter patients with similar axonal pathology who have sensory loss. These are called acute motor and sensory axonal neuropathy.
Does it matter?
On average, the rate of recovery from AIDP or AMAn is about the same. There are some patients with AMAN who recover fast, ans AIDP ususally does. There may be slightly more who recover slowly. AMAN is so uncommon in the USA and Europe that it is difficult for us to study. …….[/quote]
Im not sure if that helps at all, as usuall it sounds fuzzy, as with so much of GBS.
AnonymousMay 9, 2007 at 11:21 pm
Gene, nate’s old Neuro told me he had Myelin and Nerve damage together.
That would account for his pain.
Our chiro also told me today that when the muscles are not being fed by the nerves in a complete way, the muscles try to work harder and they give out early and hurt.
Its a toss up as to which thing is causing the pain.
Nate is going to have new Nerve Conduction done later this month. That should tell us what is going on at the present.
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