my 3 year old has gbs
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September 10, 2006 at 10:50 pm
My daughter was diagnosed with gbs on august 21. They said it was a mild case because it has stayed in her legs. But from the time she was in the hospital till now, she could still walk now she can’t even stand. I’m so scared for her. The doctors are not doing anything. The only test they ran was the emg. They did not want to do the ivig if she did not get any worse. But she is worse. I don’t know what they are waiting for. She has started pt last week but the therapist is trying to see if she is still weakening. If you have any advace please give it to me. I am trying to find out as much as I can. We go back to the doc. on wendsday.
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September 10, 2006 at 11:33 pm
Having a 16 year old that was diagnosed in June with GBS…. I will tell you what I would do.
Either take the child to the emergency room tonight, or if you can stand to wait, return to your Dr. first thing in the morning. You never know how quickly the symptoms are going to get worse….. if you see a downhill slope I would get to the hospital.
Our first stop at a small hospital… they wanted to treat our son for heat exhaustion. He didn’t have any of the symptoms, but that was the best they could do. We chose to go on to a larger hospital where he was diagnosed almost immediately with GBS.
Follow your gut instinct. Hoping for the best!
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September 11, 2006 at 8:11 am
mom,
tell them she is getting worse & by their own word they would give her ivig. they would not wait if it was a relative of theirs. demand ivig, the squeeky wheel is the one that gets oiled in the medical field. what city do you live in? i keep a list of neuros. take care. be well.
gene gbs 8-99
in numbers there is strength -
September 11, 2006 at 11:00 am
I know exactly what you’re going through. My son was diagnosed in March (he got sick the beginning of feb) they never did an ivig treatment nor PT. I don’t know if this will help you but he still has times where he is getting worse. (after a second emg that says he is getting better) The dr.s say that anytime he gets a cold, the flu, etc. he will regress. They just put him on Neurontin and it does seem to help. I am going through the same roller coaster as you and i know how scary it is. Please feel free to email me anytime and maybe we can get through this together. I will be thinking of you and your child. Good luck.
Stacy
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September 11, 2006 at 12:04 pm
gene,
I live in Pooler Ga, which is right out side of Savannah. Her neuro is Dr. Pearlman. We go to see him in two days. We just got back from pt I think she did pretty good ( if only she would stop crying). Her pt said she does not feel that she has gotten weaker since last week so that is a good sign.Stacy,
How bad did your son get? What were the docotors reasons for not giving the ivig? What is neurontin? Its so hard kelly is only three so she can’t tell me if her hands or feet are numb, or what she is feeling. i’m glad to see your son is getting better with out the ivig. Every thing I have read most people seem to get the ivig, then they start to get better. What test did they do to comfrim it was gb? We do seem to be in the same boat, It seem like they are doing nothing. Please email me also, I knoe I can use all the advace you can give.
cheryl -
September 11, 2006 at 4:32 pm
Get your child to the hospital ASAP and if they have not confirmed GBS by a spinal tap ( I know that sounds scary) have it done…they need to test the protein levels in the spinal fluid to confirm GBS…
Then have them begin IVIG treatments after that ( my six year old daughter was diagnosed in June and had five days of IVIG treatments)…the IVIG does wonders…it gets the antibodies back into balance and stops the GBS from spreading…
GBS starts in the toes and fingers and moves inward…not to upset you but it can lead to respitory distress as well…fortunately it was caught in Kimberly’s case before it reached that but she was temporarily paralzyed from the waist down…
My Kimberly started second grade on Friday and walked into school without a wheelchair or a walker…10 weeks ago we would have never thought that would happen…
Good Luck and my thoughts an prayers are with you and your family throughout this difficult time…
-Patty
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December 3, 2006 at 8:37 pm
Hi there my son just got out of the hospital 2 weeks ago he is 14months old. They did the spinal which finds out if they have protein in the spine and that is the only way to diagnos GBS. I would have them do this and start her on ivig they did this right away for my son and before we left the hospital he was sitting on his own. His case is much worse but I think you should be firm because is gets worse really quick. Good luck to you..
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December 3, 2006 at 9:29 pm
Get them to give her IVig now!!! The purpose is to stop further damage to her nerves. The more damage GBS has a chance to do, the more likely she will have residual problems that can last a lifetime.
Now is the time to insist. You will need to be your daughter’s advocate. The doctors are being careless with her health. Don’t take “no” for an answer.
Protein does not always show up in a spinal tap with GBS. This is called a false negative.
There is no one definitive test for GBS. Nerve conduction study or electromyelogram are the most likely to be helpful. These will show if there is interuption in the messages going from the nerves to the muscles. Both tests are somewhat subjective and must be done on the areas of the body showing damage, in order to be helpful.
Best wishes,
Suzanne
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December 4, 2006 at 10:03 am
ditto suzanne.
cheryl,
so sorry i did not reply much earlier, missed your post. your daughter is crying cuz she is in horrific pain. she needs neurontin. take care. be well.GA hospital in Atlanta “The Shepherd Center”. Excellent facility that treats on average 50 cases of GBS a year. It is a catastrophic care facility that deals primarily with spinal chord injuries, MS, GBS etc, [url]http://www.shepherd.org/[/url]
Emory University in Atlanta, Ga. The head neuro when I was there (’99) was Dr. Owen Samuelson, but he had several sharp assistants and interns. A young resident actually diagnosed me.
southern GA. I was dxed and treated in LaGrange by Dr. Reza Sabet.
Dr. Gotay in Gainesville and he is just awesome. He was able to see me immediately and started the IVIG the same day
southern GA If Tallahassee is not too far of a trip for you might want to get in touch with the Tallahassee Neurological Clinic at (850)878-8121. They have done wonders with me
gene gbs 8-99
in numbers there is strength
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