Brady in Phoenix
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December 9, 2007 at 6:40 pm
My son Brady was diagnosed with GBS on 12/7/07. He is currently in ICU and has begun the IVIG treatment. He has little movement in his legs and moderate movement in his arms and neck. He is breathing on his own with forced oxygen and we are praying that this does not progress. On 12/6/07 he was riding his bike and skateboard, doing the things a normal 7 yr old kid does and within 24 hours he had lost movement in his legs and could not sit up on his own. We are an absolute trainwreck and are hoping someone has known of an experience where this sydrome did not progress to the peak stage and experienced a quick recovery. We are hopefull that since it was diagnosed so quickly and IVIG begun that he will have a positive outcome. Thanks to all for sharing, this site has been very helpfull to my family
Dad
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December 9, 2007 at 6:47 pm
I got it similiar to Brady and started treatments right away and it stopped at my chin and I was able to ward off the respirator. Tell him to really try when the air volume tests are performed.
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December 9, 2007 at 8:05 pm
hi dad & welcome,
no one knows the particulars of your son’s outcome except to say he will recover. ivig works 70% of the time. so you should make sure your son does not get noticeably worse in the weeks to come. if so, it is not working & they should try plasmapheresis [pp], also works abt 70% of the time. do not look for improvement to see if the ivig is working, just no more decline. if he got neither, which is not the case, his recovery odds are high, but he would be in worse shape after the active part of this disorder leaves him. is he in any pain? take care. be well.
gene gbs 8-99
in numbers there is strength -
December 9, 2007 at 9:30 pm
I feel and understand your pain, my son is ten. You were dx quickly, that is amazingly encouraging! The outlook is probably good. If things were getting worse, there would be concearn, you would have noticed a decline by now (I suspect) if it were going to happen. The ivig does not stop the progression, it just halts the continual progression of bad auto antibody production. The bad auto antibodies are the culprit.
You may have God’s hand over you and things will be close to normal with in a few months. But you should know that the possibility of pt does exist. If you ever want to talk or would want your son to talk to another boy his age, pm me your number and we would be ever so happy to help.
The hardest part of this journey is going to be trying to keep a little boy at rest. As Gene always says,”gbs means getting better slowly,rest rest and more rest” That was the hardest thing for me to control and still is. The sooner you figure that out the better. Kevin had so many sprained ankles because he was trying to play like a normal boy. But he wasn’t normal for a while. Now he is!!! He just came in from the freezing cold after having a airsoft gun war with some neighbor kids and his brother. Running up and down the icy, snowy hills in our yards. Plus we walked around every store that has airsoft guns this afternoon, looking for the perfect one! SOOOO, do not despair, there is a light at the end of the tunnel. The journey will give you stregnth you never knew you had.
Since Kevin has been sick 1 year and 4 months, he has become a different person while on his journey. A more understanding, brave, considerate boy that could conquer anything that he has too. That was the positive that came out of this experience.
Best wishes, prayers, and thoughts are with you in this time of confusion and discovery. Please pm if you would like to talk.
Dawn Kevies mom
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December 9, 2007 at 9:32 pm
PLEASE DO NOT LET THEM DO STEROIDS, AS THEY ARE THOUGHT TO BE COUNTERPRODUCTIVE FOR GBS.
Dawn
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December 10, 2007 at 8:35 am
Thank you, it is really great to hear the encouragement. My wife and I are trying to understand this and are coming to a realization of what lies ahead for our son. We are still in the phase of “How did this happen”. Brady’s only complaint of pain is in his lower back and neck. He is moving his legs and can bring them up to a bent position which is very encouraging. He begins another IVIG infusion today and we just pray that this horrible disease does not progress. I hope to give a positive update in a day or two. Thank you to all of you
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December 11, 2007 at 12:31 pm
Please be sure the flow rate is no higher than 50 for the infusion. Make sure they are pre medicating with 2 reg stregnth tylenol (extra 150 mg than one extra stregnth) benadryl, zofran if nausea. I am sure they are already doing that, but better to be sure. Some of the things that happen to people in the hospital are interesting lets say. We also found that administering a motrin 1 hour after the tylenol helped significantly in reducing the incidence of headache. Usually if the headache is managed, there is no nausea.
His back and neck also may be related to the infusion. Kevin had the aseptic meinigitis reaction to ivig. The spinal chord gets enflamed all the way up to the neck. The doc actually pushed Kevin’s head down, his chin was on his chest and his feet flexed backwards themselves due to the inflamation.
Another thing to consider is, are they using Gammaguard liquid, or Gammaguard S/D (the powder form)? The powder form causes more reaction. Keep record of all of the ivig bottle lot numbers in case there was ever a recall. Not to alarm you, just to be safe, kind of like getting a gift receipt, no big deal.
We currently are having ivig for the next three days. The first time we had it it was over 5 days. How many days is your son having it for?
Just to warn you, it may be necessary to repeat the treatment if symptoms worsen. Do not be alarmed. It may not even happen. Good luck!
Dawn Kevies mom -
December 13, 2007 at 4:49 pm
Brady has been on a ventilator for the last three days, doing much better and doctors hoping to remove him from it in the next 24-48 hours. He has regained some strength in his arms and is moving and bending his legs. We are very encouraged by his progress and hoping these are good signs of a speedy recovery
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December 13, 2007 at 6:54 pm
My son was diagnosed 9/22/07. We were in the hospital 3 weeks, then at a “stay in” physical therapy building another week. He is still getting pt 3 times per week and will probably continue for up to 6 months. Tucker, my son, was incapable of moving anything but his hands for a few days and gained little movement in his lower half over a few weeks. But, once his hips and legs got back to moving, he began to roll, push up, and eventually crawl. Your sons determination will take over, have faith. Tucker needs rest often and gets frustraited when he doesn’t know why he is tired. It is hard to communicate to him very much given that he is only 20 months old now but I wanted to give you hope that this will pass and everything will be ok. Tucker still has no reflexes and his toes do not grip. The pt and drs say that his lower half especially ankles and feet will be the hardest to regain full mobility with. But, regardless of his limitations he is running and playing like normal, just falls a bunch! Stay positive, your son will read off of you emotions. Love him a bunch and he will understand. God bless with prayers. Tucker’s mom
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