This is an update, and questions for my daughter Kellee
AnonymousJune 12, 2009 at 10:25 am
This is an update, and questions for my daughter Kellee, She is now walking and even running with her friends again. Things where getting better for her, when I was called to her school to look at some work she had done, The teacher had noticed a change in her writing and speech patterns. At the time she got GBS her handwriting was good for a 7 year old, GBS changed that. After getting her back in school we seen an improvement in her handwriting, slowly it has gotten worse, to now about as bad as it can get we can’t read it at all. As far as her speech I didn’t hear any problems until her teacher pointed it out and it has also gotten worse over time, which now has landed her in summer school. Is this common when recovering from GBS?
About three weeks ago I was woken up to a loud mown, It was Kellee she was sound asleep and in pain, it seemed as if she was having a mild seizure. It stopped as fast as it came. I stayed up the rest of that night just watching her, it happened three times. In the morning I took her to the hospital where we meet up with her regular Doctor, explained what I had seen, and he checked her out and we where told it was muscle crapping. Two days later if happened again, what appeared to be a mild seizure. Once again off to the hospital we went. This time she fell asleep and again she seemed to have a mild seizure, but a nurse was in the room and also seen it. The first thing they did was a LP, which showed signs of GBS. There was no weakness in her legs or arms. SO began the tests, test after test. The only thing found to this date is some muscle groups are having a problem in coming back to where they once were. Over the past three weeks her pain during her sleep has grow to the point of awaking her every time it happens. The doctors believe that GBS or some form of GBS will return. But so many unanswered questions to this point.
Has anyone had mild seizures after having GBS? And what was the outcome?
Her regular doctor says that this is rear but GBS just might be with her for a long time to come. I just don’t understand how she can get so much better and still have another form of GBS. My thinking tells me the doctors just don’t know what is happening to her. Everyday I feel if we could be heading back to the children’s hospital for a long stay. These days I don’t get much sleep from watching her at night to going to summer school with her. During her time not sleeping she plays, runs, and is trying to learn to ride her bike again. So to me this is now only affecting her handwriting, speech and sleep. Is there anyone that might have an answer to this?
June 12, 2009 at 2:48 pm
How long of a time span was there between the first incidence of gbs and the present one? how far apart was the first l/p from the second? If there was some time and the l/p is elevated again, it might not be gbs, perhaps cidp. I am not sure if I understand your post properly, but at present she is able to ride her bike, but is mostly being affected in the arms, hands and speech. Typicaly the feet and legs go first, but there is nothing typical aboout this disease. Did she get ivig the first time around? If so, was her response good? Does the doc suggest ivig at this time? Good luck, keep us posted.
Dawn Kevies mom
AnonymousJune 12, 2009 at 3:26 pm
The first incidence of GBS started in DEC,2008. On Dec 21 she started with 5 treatments of ivig, the LP was done on the 19th of Dec. this time the LP was done on May 27th and again on June 4th both showed an elevation again. So it’s almost 7 months apart. She can’t ride her bike yet with out me helping her, she does try to do it by herself. It’s not that it has started in her arms, hands and her speech, It’s almost like it ever went away some form of GBS has been with her during the recovery and now is starting to show signs of returning, But a lot slower then in Dec. then again the doctors are not sure if it’s GBS or a form of GBS, or it’s some damage from the first time, that she will live with her hole life. Her feet have always had tingling or numbness at different times sense Dec. but I was told that it will slowly get better.
AnonymousJune 12, 2009 at 5:25 pm
Hi Aker! So sorry to hear this about your daughter and what she is going through. I too have never heard of anyone having seizures with GBS but I guess anything could be possible.
I think I would try and get a second opinion from another Neurologist and see what they think it could be. I could understand the hands and speech maybe being a residual from the GBS but the seizures on the other hand might be totally something different!
The seizures might be another problem she is having that has no relation to the GBS at all but then it might all be related! But I would try and get a second opinion.
But I really hate to hear this about your daughter and will keep her in my prayers! Hugs
June 12, 2009 at 7:53 pm
My son, 10 at the time was first dx w/gbs, the first four months following ivig were perfectly normal w/full ability to play like a wild man, bike, trampoline even intramural bball. This is coming off of a not being able to walk at all or hold a pencil or pull on his underwear. At about 4-5 months post he was always tired and slowing down. We did a third ncv/emg and it had returned to the state of his first one. We did ivig again and still went w/ gbs, saying that we needed another dose because maybe we did not get all of the autoantibodies out. 6 months went buy again and it started again. We now have a cidp dx and have been getting ivig monthly for about 18 months (Oct. 3rd will be 3 years, but there were two periods of 6 months that we were under the assumption it was gbs)
Regarding your comment that Kellee will be like this her whole life, if it is cidp (the continued elevated protein in the l/p would be a good indication) she can get ivig regularly and the inflamation on the myelin will go away and she can start to heal. Time is important, the quicker she gets ivig (if the docs determine it is cidp) the sooner she can start repairing and building up her stregnth. Kevie does have his tired and painful days, but he IS repairing and getting better. He recently had another ncv/emg and it was a normal study. So there IS HOPE. Keep us posted.
PS, about the seizures, is she on any other medications? Some neurological meds can cause seizures. If not, I would seek another opinion regarding the seizures and maybe see if they would do an eeg. I do not remember if anyone on the site has had seizures in connection w/gbs/cidp, but try the search engine and maybe some old posts will come up. If you would like to talk, you can pm me your phone number.
Dawn Kevies mom
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