GBS and still not done?
-
-
June 7, 2013 at 8:42 pm
My son was diagnosed in November of 2012 with Guillain Barre Syndrome just 3 weeks after his 7th birthday. It affected his legs first and slowly affected his arms and torso after being admitted to the hospital. IVIG treatments and OT and PT all went well. I have to say I felt very lucky to have such a determined outgoing 7-year-old to be able to recover from this sickness. As we approached the 6 month mark and prepared for our EMG test, he started to have “episodes” that I first described to people as “passing out”. But he was never like “out”. Its very hard to explain the actions of said “episodes”, just that they were getting more frequent and longer (we are only talking 10 to 15 seconds in the end but very strange no less). So after this had been going on for about two and a half weeks, the morning we are to head to appt. for EMG, I was giving him a bath and went to grab the towel and he fell into one of these “episodes” and knew at that moment something wasn’t right. When we arrived at the neurology department I told his doctor about what was going on and she scheduled an EEG after the EMG. Needless to say she concluded he was having seizures and ordered an MRI which we are waiting to go to on Monday. She also prescribed antiseizure meds. The anticipation is killing me! I hate the unknown.
Signed
corbinhoney
-
June 7, 2013 at 10:29 pm
According to Parry and Syeinberg, this is called “encephalopathy” and is not doe to injury to cranial nerves, but is more commonly caused by “impaired blood oxygen supply resulting from weakness of the muscles of respiration.”
I’m not trying to diagnose it, but merely suggesting something you should discuss with the neurologist.
-
June 8, 2013 at 8:31 am
So all of the respiratory tests that were done in the hospital (twice a day) aren’t relevant? They tested him for that and I thought that was why. I am just so surprised to find out all the things that can go wrong after you think its a done deal! Thank you for you post, its not the first one I’ve seen similar to it. Just hoping I was wrong. So he is on anti-epileptic meds and I swear they are making him soooo hard to handle.
-
June 8, 2013 at 7:14 pm
I did not say that respiratory tests are not relevant. In fact, they are very important. The test which was done twice a day may have been “vital capacity,” which checks whether the amount of air the Pt can move in one breath is decreasing. The blood oxygen test is a continuous monitor, in some units of the hospital, two to four times a day in other units. Is he getting the blood oxygen test regularly since he has been exhibiting these symptoms?
It is important to keep an open mind and look at all possible causes.
-
June 9, 2013 at 12:15 am
No he has not had regular blood oxygen tests since he was discharged the middle of December. I don’t want to sound dumb, but that’s the thing they put on their finger right? Ive taken him in for blood pressure checks since his was affected by GBS and was on medication to bring it down and they test that at the same time. Since nobody said different I am assuming they were normal. The trouble he had was muscle weakness in his legs, arms, torso (abdominally mostly), and his blood pressure. Does this still sound like “encephalopathy”? And if not, any more suggestions? Come Monday maybe we can rule things out with the brain MRI. And sorry about the confusion about the two different tests. I was confused.
corbinhoney
-
June 9, 2013 at 4:28 am
I’m not a doctor and wouldn’t try to define it, I was just reporting what Parry and Steinberg wrote. Yes, the blood oxygen test is done be clipping a sensor on the finger. You do have to wait for the MRI, of course, and should always keep an open mind. Neuropathies are sometimes hard to pin down.
-
June 12, 2013 at 8:17 am
Thank you so much for your input. I really appreciate it a lot. The anxious wait is pacified by being able to talk to people. We had the MRI on Monday and are waiting. I think that’s the hardest for me so thank you for filling in the gaps and giving me things to think about and also inspiring me to be open minded.
corbinhoney
-
June 14, 2013 at 4:21 am
Free and clear of any scary stuff. As of now he is diagnosed with epilepsy. I guess more process of elimination to determine what type.
corbinhoney
-
