AnonymousFebruary 10, 2007 at 3:36 pm
Many of you remember me as the high school band director in New Orleans.
I’m posting this to introduce Tammy, a neighbor, and parent of one of my students whose 6 year old looks like she has GBS.
With our healthcare system in ruins in New Orleans and the fact that my neuro has passed away, I’m asking her to visit this forum for additional information and guidance.
She has taken her daughter into Childrens Hospital ER several times this week and it took them a few times before the MD stated that they “thought ” it was GBS, but they have not done the spinal tap.
As this is my first time as a “point of contact” with a child, I’m hopeing that some of you with experience with GBS in children will be able to help us fill in the blanks.
I have given her all the booklets as well as a conversation detailing many things. I have a parade ( Mardi Gras here ) this afternoon / evening, that my band is involved in so I will be out of touch except by cell phone until about 10 pm. I will be available 24 / 7 after the parade and will visit with them on Sunday.
My main concern is that they have given here neurotin and sent her home but have not done the spinal tap. The fact that ny case moved so quickly, I wonder about the approach the hospital is using but wonder if this is the case with children.
My thought is to seek a second opinion with a different hospital.
So, if we can rally behind Tammy with solid info and help, this would be appreciated.
Tammy, please feel free to post ANY questions here or in the childrens forum.
AnonymousFebruary 10, 2007 at 8:26 pm
Mike ~ it’s so good to hear from you again! and thanks for introducing us to Tammy 🙂 I don’t know anything about children and GBS but with any nerve disease process it is imperative to find assistance ASAP. Go wherever you have to. And second opinions are always a good thing. I know that this family will help you with what we can. Keep coming back and asking questions so that we are reminded of your immediate needs. I send prayer thoughts for quick answers so you know how to assist your child’s recovery. You can’t possibly know how important the role of mom/caregiver is. We hold our caregivers in the highest esteem. Many hugs and welcome 🙂
AnonymousFebruary 11, 2007 at 12:02 am
Hey Ya Mike, Tell Tammy to go get a 2nd opinion, Please. Being as gbs can progress quickly and include breathing problems, I think it is important to get the youngster checked and tested properly, sooner rather then later. And if it is gbs, ivig needs to be started soon. Hope you don’t over do it at Mardi Gras!:) Take care.
AnonymousFebruary 11, 2007 at 11:51 pm
Hi Mike, we missed you, welcome back and good to hear from you.
Welcome Tammy, so sorry to hear that your daughter is having problems and may have GBS. I agree a second opinion would be a good thing, you can never be sure and with your daughter so young it’s best to make sure what your dealing with. Glad you found us, you have a great advocate down there with you in Mike. Take care, my thoughts and prayers are with you and your daughter.
AnonymousFebruary 13, 2007 at 8:00 pm
Hello My name is Tammy. I am a friend of Mike the band teacher for New Orleans. I am going around in circles with Katelyn’s doctors (Katelyn is 6). He doctor is on vacation for 2 weeks and she has an appointment to take some kind of test on Friday, February 23. I had to call the office again and tell them that she is not having headaches and they upped her medicine. She now takes 100 mg in the morning, 50 mg when she gets home from school and 100 mg at night, the medicine is Neuroutin I have no idea what to do. I have giving my child so much of the medicine. They have not said that she has GBS, but they are 99% sure, that is what she has. She has no flex in her legs, feet, arms nor her hands. She is now getting headaches, she is falls at least 10 – 15 times a day, and she lost 5 pounds in 6 days. I do think that I have something to worry about, but the doctors seem to be pushing me to the side. Can I please get some help.
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