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growing up after gbs

Post a new topicby kid_gbs on Wed Mar 05, 2008 1:54 pm


My daughter had GBS when she was thirteen and could not walk by the time she was hospitalized. Thank God she responded well to gamma goblin treatments, did not need a respirator and only spend seven days in the hospital. She made a complete recovery after a few months when the myelin sheath began to grow back.
I do have questions now that she is 24 as she was just turned down for a study involving the removal of her wisdom teeth. It involved a research study evaluating an investigational medication for pre-operative anxiety I do not recall the doctor giving us any info about future health issues such as:
*contracting colds and possibly flu
*giving blood
*future surgeries
*pregnancy/breast feeding
*taking certain medications
Also is it NOW necessary for her to reveal or even mention the fact she has had GBS everytime she sees a doctor for whatever as the majority of doctors have either never had a patient with GBS or actually know very little about the syndrome.
Any input would be most helpful. Thanks!

kid_gbs
 
Posts: 2 | Joined: Wed Mar 05, 2008 1:27 pm

Re: growing up after gbs

Post a new topicby Mellie on Tue Mar 11, 2008 2:40 am

I had GBS as a 5 year old back in 1981. Back then, it was not at all a child's illness and was just never seen in children. In fact, I made CDC records (my 15 minutes of fame?). :-)

Anyway, now I'm 31 and to this day, I ALWAYS let the doctors know about my former GBS. In fact, I had to receive shots for a job working with biohazards, and contacted my childhood neurologist to make sure I could get them. I'm still not sure if I can receive the vaccines to travel to certain countries.

Back when I was diagnosed and treated, I was told never to get another flu shot, nor would they allow me to finish my childhood booster shots. I'm not sure how they feel about that now, but I would still recommend mentioning it to EVERY doctor that your daughter encounters.

Mellie
 
Posts: 1 | Joined: Tue Mar 11, 2008 2:33 am

Re: growing up after gbs

Post a new topicby kid_gbs on Wed Mar 12, 2008 11:43 pm


Thank you for your response. The whole thing is still kinda frightening because there seems to be so many unanswerable (if that's a word,ha!) questions. I guess we may never know all there is to know about GBS. i just thank God still that it was GBS and not some fatal, horrible neurological disease.

kid_gbs
 
Posts: 2 | Joined: Wed Mar 05, 2008 1:27 pm

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