Best Children’s Hospitals for GBS

My 16 year old son received excellent medical care at Children’s in Omaha, NE.

We had a bad experience at the University of Michigan. The dr.’s and nurses were wonderful but the length of time from the time my son got sick to the time he was diagnosed was five weeks. He was misdiagnosed 9 times. We were also sent home from the ER 5 times before they admitted him (the last time i cried to the dr and begged him to at least do some testing).

They said they misdiagnosed him so much because headaches aren’t associated with GBS and because it started in his face. I wish the Dr.s would listen to parents, we know when something is wrong with our child.

Good luck to all

It has been 6 years since my son was diagnosed – Labor Day 2000 – and he got excellent treatment at Children’s Hospital of Philadelphia which also has the in-patient rehab center called Children’s Seashore House. The staff was incredible from the drs, nurses, pt therapists, and cafeteria staff. They had a music therapist (who played soft guitar music when my son was in pain and it really soothed him) and play therapist (who encouraged him to play Nintendo as physical therapy). I only had one negative experience and the staff followed up quickly with corrective action.

WE were lucky to wind up at Kosairs Children’s Hospital in Louisville, KY. The ER staff was very proactive, a young Dr (Dr Coombs) stayed with us through every step of the way, even the spinal tap. When they began to believe this was GBS they contacted Dr Puri, who leads the neurology department there at Kosairs. Once the diagnosis was confirmed our 2 year old son was admitted and treatment began the next day.

I have to say, I feel very lucky to have a facility like this and the exceptional Doctors that practice here, right in our backyard.

Another good hospital was the Goryeb Children’s Hospital at Morristown Medical Center, Morristown, NJ. We had excellent pediatric neurologists, Dr. Sandy Waran and his partners Drs. Topper and DeSouza.

We were at Le Bonheur Children’s Hospital in Memphis when my daughter was diagnosed. Although the ER doc made her prelim diagnosis as GBS and she was admitted that night, it took the neurology team 3 days and WAY too many tests to firmly diagnose her. It is a teaching hospital, so if the first resident failed at getting a spinal, the next one got a chance….my daughter had 3 spinals before they could get fluid. Once she was dx’d…she got the IVIG quickly and started showing improvement after 10 hours….but none of the staff (nurses & night residents) was at all familiar with GBS, so it was had for them to know how to treat her…she was in so much pain for several days until I could finally convince a doc that pain killers were not going to work with her pain….I said from the day she was dx’d that she needed Neurontin…and when she got it…she felt much better. Like someone else said….I just wish they docs would listen to the parents…we are the only voice for our children…we are their advocates. WOW…sorry to ramble on….sometimes just need to vent.

Jenn – Mom to Hanna

In Mid South (Nashville) Vanderbilt Hostpital I would highly recommend

Arnold Palmer in Orlando, Fl. was excellent in all regards for both patient and family!!!