Son’s pediatrician mentioned GBS — need info

Dear Stacy:

I am tremendously sorry to hear about your son. You must be worried sick. I really feel for you.

GBS is a pretty strange disease and can present a hodgepodge of odd symptoms. Generally GBS is symetrical and starts at the extremities and works it’s way up. Likewise, reflexes are affected along with all other peripheral nerves, so it doesn’t sound like your son has GBS, although it is within the realm of possibility.

Stacy, we will keep you and your son in your prayers. I hope he gets a good diagnosis quickly.

Lee

My support and prayers are with you. I had my GBS one month after I had a flu like syndrome. Be well and have faith.

Stacey,

Keep taking your son back and keep asking for answers. Don’t let them fob you off. At first my reflexes were ok but then several days later they were gone. Keep pushing for answers.

Hope all goes well for you and your son.

Regards,
Debbie

Stacey, I too had GBS in Dec 2005 but my doctor had problems dignosising it since I still had reflexes and could still walk without assistance. 2 weeks later I was in a nuerologist’s office confirming the diagnosis. Get a second opinion from a doctor who has treated GBS and knows what the symptoms are and how they progress. I hope the best for your son and remember to always support him. It maybe a long recovery but he can do it with praise and hope.

Dear Stacey,
I really feel for what you are going through right now and my thoughts and prayers are with you, your son and your family. It was a year in February when my son (3 y/o at the time) was tentatively diagnosed with GBS. He had extremity weakness, slightly worse on left side, involving legs and to some extent arms. His balance was affected to where with weakness he was tripping a lot and tiring easily. He also complained of pains in his feet. He had no deep tendon reflexes in his legs and diminished reflexes in arms. And he had a CK level of 150. He had NO previous illness or vaccine in the lead-up to this. We had him admitted to the hospital for about a week initially and he underwent a Muscular Dystrophy work-up along with GBS. He also received IVIg for 5 days (0.4gm/kg daily). With the infusion, he showed signs of improvement at around 36 hours (trust me I was counting seconds in life then). The diagnosis changed to CIDP (think of it as Chronic GBS) last June after relapses and he improved over time and continues so with monthly IVIg treatments. You’ve signed onto a very helpfull site and organization. And what will help you most is seeking answers and second and third, forth, etc.. opinions. At this point, the differential diagnosis are probably numerous. I’ll relay sites for such if needed. We were in the driver’s seat all of the time. My wife and I are in the medical field, so that helped. But you need to seek the help of a Pediatric Neurologist with experience in this area. Do not assume all Ped Neurologists know how to handle this. We’ve found significant diversity within the field as far as experience and treatment approach at least with CIDP. And not finding the right specialist cost us time and cost my son added pain and disability. Please consider us a source if your son’s diagnosis leads to GBS or CIDP. Neil Bulich