12 year old – no Diagnosis – ?GBS
AnonymousDecember 23, 2008 at 4:37 am
Hello, The good news is that my son is improving. The bad news is that after a week at a Children’s hospital and 3 weeks of follow up visits, they still have no idea.
He had a sudden onset of weakness and sensation loss on November 22nd. He woke up that morning with what we thought was severe heart burn and he looked ill. We were at a hotel at the time for a hockey tournament he played in.
He continued to feel sick and said that his legs felt weak. We had a doctor who is a team parent look at him and told him to take an advil and a pepsid. They said to have him warm up with the team and see how he feels. When he went out on the ice, he was teary and looked scared. He has never missed a game for illness so I just thought he was upset. He was walking fine at the time.
When he went to skate, he could barely stand up. My husband (who is his coach) had him come and sit on the bench for the game. After the game, he went out to shake hands and collapsed on the ice. He was carried off and evaluated by an ER doctor and a paramedic who were in the audience. He had some hits (nothing unusual) in his hockey game the day before. They did not feel there was any spinal trauma but that he had proximal hip weakness and had us go to the hospital near the rink (90 miles from our home). They did CT scan of the head and an MRI of the lumbar spine and they were normal. The doctor thought it looked more like a neurological disease than an injury and sent us to a Children’s hospital near our home in Denver. Once he got his skates off, he could walk in an unsteady way to the hospital but 3 hours later, he could not even hold any weight on his legs.
When we got to Denver, they did a spinal tap and blood work that were normal. He could still sit normally and move his legs when laying down at that time. In the morning, he woke up and he could no longer move his legs at all. He had also become incontinent of urine over night.
They did EKG’s, Chest X-Ray, MRI’s of the head, neck, mid back and re-read the lumbar and sacral spines. All were negative. He had normal deep tendor reflexes for his entire stay as well. By that afternoon, he could no longer sit on his own and could not feel sharp/dull and hot and cold below his belly button. He could tell he was being touched but it was number than above. The, about 36 hours after it all started, he began moving his legs in bed and has made steady imrpovement since.
So they pretty much felt they ruled out GBS, the actually felt he had a psychiatric conversion disorder. Then, they did more testing on his bladder and realized he had a neurogenic bladder and that he could not have a conversion disorder.
We were discharged catheterizing him every 4 hours because he could pee but had a lot left in his bladder when he was done. We are still doing this but now only twice a day and his left over urine is getting just about normal now. He is now also getting wet in a pull up at night which he has not done since he was 3.
I am a physical therapist and wanted them to do an EMG in the hospital but they did not feel it was needed. Then they decided to do one this past Friday and it was normal. Of course, he is at almost normal strength now so I am not sure how helpful it would be. They never repeated the spinal tap after the first night this started.
So, he left the hospital walking with a walker and over the course of the 3 weeks since then he is now walking on his own, walking up and down stairs slowly and the bladder /muscle/sensation has improved over the 3 week period in a steady manner. He still can’t run, jump etc. His calves are weak and his glut muscles. I do PT with him at home (imagine the poor kid with a PT for a mom!) and goes to a colleague once a week.
The doctors now want to go with the idea that he had a spinal cord injury during the hockey game the day before even though all MRI’s were normal, even one taken 1 week later. He never had signs up central nervous system problems like spasticity, hyper reflexes etc. so I don’t understand the latest diagnosis. They said that people with unusual (and mild) forms of GBS do not have bladder problems but the urologist today said they often do.
We are at a loss here. We are thrilled he is getting better. They never treated him with IVIG, steroids, etc. We just don’t know how to plan for his future and how to possibly prevent this without a diagnosis. Does anyone have any thought given your backgrounds and any suggestions about what we should do next. I did ask his doctors if we should let him get flu shots and they all hesitated to say yes.
I know they are doing their best and are frustrated as well. I was just curious if anyone had thoughts about his case and if mild GBS can have normal LP (done right after onset) and deep tendon reflexes. Whatever he has is a rare form of something so we are just looking to others to help. We would like to get a second opinion as well. If anyone has suggestions from GBS experts, that would be great.
Sorry so long!
AnonymousJanuary 19, 2009 at 2:45 pm
Hi, I don’t come around very often any more, but something made me check in.
I know a bit of what you are going through. My daughter was initially labeled as mild GBS, but her LP was normal. It was done w/in 24 hours of onset (more like 12 hours) and no one suggested it should be repeated, so who knows if it would have been abnormal later or not.
In any case, her case was primarily lower body weakness, loss of balance, extreme tiredness, numbness. They said she’d be better within a month or so, but they were wrong. By the time I researched and pushed for ivig, it was past the usual window for doing it. And she was improving by then, too, though I will say her recovery was far longer than they anticipated.
She was slowly and steadily improving as far as fatigue, but could not walk without a walker at 3 months past the initial event. She progressed to crutches about 5 months after initial event, was walking independently 100% of the time about 8 months post-illness. Some weakness and fatigue persisted for about another 6-8 months past when she was walking. She had to slowly build back up. She is now totally well. Keeping things as normal as possible was our goal during the whole ordeal. She went to school as soon as she could manage it. I think that may have slowed down physical recovery b/c it took so much energy. But she was happier seeing her friends. Once school was out and she had more time to devote to rest and PT, her progress went a little faster.
One doctor suggested CD as a possibility, among other things like Myasthenia Gravis (which was ruled out). She did see a psychologist to help with dealing with the recovery and coping with her temporary disability. The psych did not think that CD the case for her. In the end, several docs concurred that it was GBS or something like it. She had diminished reflexes, etc, but not all the ‘usual’ symptoms.
I think there are some new things out there or new forms. It is still a bit of a mystery. We are just thankful that she is well. I hope your son keeps improving. Hang in there. One day at a time is my only advice.
AnonymousJanuary 24, 2009 at 11:10 pm
Thanks for letting me know your story. The more I talk with people, the more I hear strange stories about neurological ordeals that were never figured out. How long has it been since your daughter recovered? I agree that at times it is good to prolong recovery so they can feel a bit normal. Just last night, I let my son have a sleep over. Their emotional health is important too!
My son has recently developed some signs that I think really rule out GBS. He has a babinski sign which is seen in injury or illness to the spinal cord. He is also recovering in a pattern typical of some sort of problem with the cord. We sent his records to Hopkins and hope to get a second opinion but are just thankful he continues to improve although at a slower rate now that he is about 90%.
His bladder is just about there too which really was the most difficult part of this ordeal for him.
You are an inspiration. I guess life is full of unknowns but at times like these, we feel more vulnerable to them. I am working on living with the fact that he will be a mystery and that I need to treat him like a regular kid even though I am nervous this could happen again since we have no idea what it is.
I guess the longer he goes without a recurrence, the better I will be with that.
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12 year old – no Diagnosis – ? GBS
AnonymousDecember 22, 2008 at 5:27 pm
I know they are doing their best and are frustrated as well. I was just curious if anyone had thoughts about his case and if mild GBS can have normal LP (done right after onset) and deep tendor reflexes. Whatever he has is a rare form of something so we are just looking to others to help. We would like to get a second opinion as well. If anyone has suggestions from GBS experts, that would be great.
Sorry so long!
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