Reply To: Possible GBS dx…5 yr old…Please help me

May 23, 2012 at 6:00 am

Hi there. I’m sorry you are dealing with this. My daughter was 4 when she was dx’d with GBS & then later CIDP. I know how stressful it is.

It sounds like your son is experiencing foot drop. My daughter had it too. She was unable to put her heals down & walked on her tip toes. She was not able to walk up stairs & her running was very slow. She woke up one morning & couldn’t even lift her arms enough to feed herself yogurt.

The pain when being touched sounds like GBS. Imagine what it feels like when your foot & leg fall asleep & you try to walk on them. That’s probably what most or all of his body is feeling like. My daughter described it as having “strawberries & nuts” in her body. She also experienced the extreme fatigue.

I don’t mean to scare you – but your pediatrician is not equipped to deal with a case of possible GBS. Your son needs to be admitted into the hospital ASAP – like Wednesday morning. Getting a diagnosis will probably take 24-48 hours once he is admitted.

Your son not only needs a spinal tap but he also needs an MRI with & without contrast of his brain, neck & spine. He also needs an EMG. He needs blood work checking for a multitude of things, such as lymes, chemical poisoning, etc. When my daughter was 1st admitted into the hospital they took 14 tubes of blood & checked her for every thing under the sun.

Now…I know how scary all of that sounds. Trust me…I was in that same position. But it is the VERY BEST thing you can do for him. The earlier the treatment the better off he will be.

Your son will probably be sedated for the spinal tap & MRI. He can’t be for the EMG.

If he does have GBS then he should be given a 5 day loading dose of IVIG. He will be hospitalized for that treatment. If it is GBS, the hospital should also get him into physical therapy.

I know all of this seems surreal – I know it did for me, but just remember the faster you a get a firm diagnosis, the faster a treatment can start.

Good luck & let us know how he is doing.
Kelly