Tuesday, March 31, 2009

Guillain-Barre Syndrome

This past week brought something new into our lives. We learned how quickly our lives can turn around and all of our plans and normal routines can be changed in an instant. The new thing that we learned was all about Guillain-Barre Syndrome (pronounced: gee-yan-buh-ray). Our youngest Son began feeling weak the week before last. He had an upper respiratory infection and cough for about two weeks and suspected that he might have pneumonia.

My Husband seen him walking across a parking lot at work and said that he noticed he was walking strangely. On Friday night he was here and was complaining about his fingers and hands being numb. On Saturday he was loading cross ties into the back of his truck and started feeling weak and fatigued. He has always been strong and a hard worker. On Sunday morning he couldn't get out of bed. His hands, arms, feet and legs were becoming numb.

On Monday morning his wife insisted on taking him to the Doctor. His Doctor asked many questions, then sent him to the Emergency Room for some tests. They did an MRI and other tests and would not let them leave the hospital. He asked if he and his wife could go for something to eat and they let them go but wanted them to return as quickly as possible.

Finally they were sent to a Neurologist at a larger hospital in a larger city. Once there, more tests were done including a spinal tap, shock tests, an EKG, an Echocardiogram and another MRI on his neck. He was diagnosed with GBS even though his spinal fluid did not contain the protein that is normally present in Guillain-Barre sufferers.

None of us had heard of GBS before and so the research began. The first thing that they were told was that this disorder could paralyze his diaphragm and he would have to be placed on a respirator in order to survive. This disorder is life-threatening and is considered a medical emergency. Which was the reason that they wanted them to stay at the Hospital and why he had to be admitted.

This is what we learned about Guillain-Barre Syndrome. It has no cure and is not a disease. It is a disorder where the body's own immune system attacks part of the peripheral nervous system, so it is sometimes called an autoimmune disease.

No one knows exactly what sets it into motion but it usually is brought on by an upper respiratory infection (in our Son's case), the stomach flu or a flu shot. The first symptoms are usually weakness and tingling in the feet and legs that ascend to the arms and hands and even to the face. In my Son's case it started in his hands and descended to his legs and feet. In severe cases symptoms can increase in intensity until the muscles cannot be used at all and the person is totally paralyzed.

We were told of several cases where the person could not even move their eyes or blink. One nurse told us of a young man who you would not even have known he was alive if he hadn't been hooked to a heart monitor and you could see his heart beating. Even his pupils were non-reactive.

Many people die from this by simply not realizing what is happening to them, they don't get to the Doctor fast enough or their Doctor fails to diagnose it quick enough. Our Son's was caught early thanks to his wife, his Doctor was smart and it wasn't a severe case but most of all, he had many, many people praying for him. For him to only be in the Hospital for six days is incredible and to leave the Hospital with nothing more than a cane is even more incredible.

On Tuesday he was at his worse, he could not move his right arm at all. His left arm was still slightly usable, he could still move his legs but walking could not be done safely. We were worried about it getting worse because by now we had heard the stories of total paralysis. His head got a little wobbly but it didn't go into his face. The good news was that he didn't have any pain because of the numbness and he never had to be put on a respirator.

On Wednesday he was on the mend, they had started treating him with infusions of intravenous immunoglobulins. We started seeing some improvements right away and by Friday he was able to hold his 4 month old Son and hug his three very young daughters.

Hospital stays with GBS are usually very lengthy, many months to a year. Our Son was released from the Hospital on Saturday after his last infusion. So he was only in the Hospital for six days. He had proved to the Physical Therapist that he could not only walk without the use of a walker but could also climb stairs.

Most Guillain-Barre sufferers are sent home with a wheelchair or at least a walker but he came home with only a cane. He is doing all of his therapy for himself as he is very anxious to get this behind him, he is working hard at it. On Friday before last he could curl 150 lbs. Yesterday he was able to curl 1 lb. and we are thrilled. Our Son has a new respect for paralyzed people.

Most people do recover from GBS but it is a long, hard road. Some are left with partial paralysis. There is always a chance of a relapse. He cannot ever give blood again, which is something that he always did. He can never have a flu shot or pneumonia shot. They will have to watch him very carefully if he ever has to have any type of surgery. He was also told that from now on if he gets sick with anything for more than two days he has to see a Doctor. 1 in 10 people will suffer a relapse.

The disorder can strike anyone at any age but it is more common in the elderly and young men. Our Son was told that if he had gone to the Doctor for his cough and gotten it taken care of, this would never have happened to him. Children can also get this disorder but it is not as common. Andy Griffith had this disorder and it is suspected that Franklin D. Roosevelt had it. It is also suspected that people have been buried alive who had it many years ago.

It was a tough week to say the least and it was very hard on their 2 yr. old daughter who didn't understand what was happening. She cried for her Mommy a lot. The 4 and 5 year old's were disturbed by seeing their strong Daddy so weak and unable to walk or give hugs. We had to take them to the Hospital to reassure them. The youngest was reassured by seeing that her Mommy was still alive but the older girls were still upset at the sight of their Daddy in his condition.

I am so thankful that he is home and doing well and that their little family is back together again. He even went back to work yesterday. Their 4 month old Son is the one who is having the most trouble readjusting. He stayed at the Hospital all week with his Mommy and Daddy, so he had gotten used to being held all of the time and passed off to every visitor who came to visit. He is missing the attention.
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