need info please

[Dalas-Pengely]

Posted by Dallas Pengelly on August 01, 1999 at 10:12:37
Hi:  My daughter has been in hospital 3 months.  Admitted for stomach problems.  Now cannot walk, use her hands, mentality about 5 year old.  Myopathy induced because of excessive prednisone first 4 days.  Now say has Guillain Barre possibly.  Have been giving chemo - cyclophosphamide and now say should take amitriptyline along with all other meds so that she can walk again.  She does not walk due to severe pain in feet, but never given analgesic for this.  Docs say ami will be answer - but we have read this is for depression and how does it aid in getting rid of foot pain.  I know it is brain neuron drug as well, but still seems far fetched for what is prob with daughter.  She is on so many drugs now and there seems no end in sight.  Can you help and possibly tell us what is usual drug for Guillain and is possible to walk again.  Will hands be normal again.  Thanks Dallas

Posted by CCF Neuro[P] MD, RPS on August 01, 1999 at 16:35:14
Dear Dallas:
How was the Guillian-Barre diagnosed?  What were the CSF protein levels, what was the neurological exam like (did she have lower extremity deep tendon reflexes, did she become muscle weak before the steroids?).  Has she had an EMG that showed a demyelinating process?  Did she have the GM1 antibodies.  In children, we usually treat GBS with IVIG infusions, usually a 5 day course.  If the child does not respond then we either do plasma exchange or cyclophosphamide depending on the serverity.  If we use elavil it is usually only for sleep.  The paresthesias in GBS can also be treated with elavil, but this will only treat the symptom as the body needs to begin to remyelinate the damaged myelin.  
Prognostication depends how weak she is.  The greater the muscle weakness, the long the recovery and the less a patient will recover.  
I hope that your daughter turns the corner soon and begins the long road to recovery.  Let us know if you need further questions answered
Sincerely,
CCF Neuro MD

Posted by Christine on August 03, 1999 at 23:14:22
Dear Doc RPS:
Does this sound like GBS to you?  Are stomach problems connected with Guillain Barre?  What has been described just doesn't juggle.  In adults, GBS tends to have stroke-like symptoms.  In children, French polio.  Can GBS begin its journey in the stomach?  From what I've studied, the symptoms begin with the outer extremities (toes, fingertips).
Is Elavil used to combat mental anguish inevitably caused by physiological pain?   I was only ever given soma compound during my clash with GBS.  I personally, as you know from the forum "Is this drug (elavil) safe?", have an aversion to it because of side-effects.
I sympathize deeply and pray it's not GBS.  If it's not GBS, then what could symptoms like these possibly be?  Be advised that your reply is for educational purposes only.
Thanks,
Christine
  

Posted by CCF Neuro[P] MD, RPS on August 05, 1999 at 13:35:36
Dear Christine:
GBS is strongly associated with the antibody to the GI bacteria Camplylobacter jujuni in 26% of all cases, and nonjspecific gastroenteritis in another 10% of cases.  So, almost 1/3 of all cases of GBS is associated with GI problems.  If you are suggesting that the symptoms of loss of reflexes, muscle weakness are associated with GBS then you are correct.  But as time progresses, strokes produce spasticity and hyper-reflexia.  GBS remains weak.  There is also some cases of GBS that wide swings of blood pressure, heart rate occur and need to be treated aggressively.  GBS has no real central component (which is where strokes occur) but is a polyradiculoneuropathy.  An EMG test will help verify the disorder.
Sincerely,
CCF Neuro MD