August 2, 2006 at 12:54 am
Our daughter at age 8 was diagnosed with GBS on April 21, 2004. First signs of illness started on her birthday in March. Upper respiratory, pink eye, fever, cough and her asthma was triggered. She was put on antibiotics and breathing treatments.
By April 7th her symptoms started but no one knew what they were related to. Symptoms were: blurred vision, pain in the fleshy part of her checks, and pain in both her legs at the exact same places. She also walked wobbly. By April 11th she could not walk and was already losing weight. It was too painful to eat plus she was having a very hard time staying awake. We went to the doctors and blood work was done for allergies. They were thinking this was all related to allergies that just started causing problems out of the blue.
Some of her blood work came back showing a High ANA (which is sometimes a link to lupus). This was the one result that finally got her admitted into the hospital. Well, through tons of blood work, poking, more questions, an MRI and CAT scan all coming back normal (Thank God), the neurologist ordered a spinal tap. That was the only test to confirm to GBS. At this point, Becca’s symptoms were: Lots of pain and sensitivity from her feet to her waist, pain in her face, more weight loss, not enough strength to cough (she still had the upper respiratory cold), she could not sit up, the back of her head was so itchy the only way to make her feel better was a shower. But the only part of the shower that helped was when she was in the water. Getting in and out was so painful. But while in the shower she felt some comfort. She had lost a total of 11 pounds.
On April 22, 2004, Becca received her first IVIG at 2:30 p.m. It was magic medicine: By 6 p.m. that night she was able to sit up with almost no pain in her legs! She received a second IVIG the next day and again showed so much improvement that the hospital staff and doctor and us where so happy.
By April 25th Becca was in rehab learning to walk again. She was in OT and PT the rest of the summer. This year after 2 years recovery, her doctor says she is 95% back.
Today Becca is growing and learning all the time. We are all so grateful that she is ok. She has taken dance classes and had her first recital this June. Last November she started ice skating and is now working with a coach. She is having so much fun. We as a family are having fun and living life to the fullest.
I want to share Becca’s story so that it might help someone some day. When Becca got sick I could not find much support until I talked to a wonderful recovering gentleman here in AZ. I got his name for the GBS Foundation. His support and kind words were so much help. He was an important person in our hope for Becca’s recovery in 2004.
Last year I had put Becca’s story on this site and through that message another parent contacted us. Her daughter and Becca have been pen pals since. And again by talking to the mom of the little girl in MA was/and is so wonderful.
It is nice to know you are not alone.
Happy, joyous and free 🙂
Nancy ( Becca’s mom)
AnonymousAugust 3, 2006 at 12:41 pm
Thank you for putting Becca’s story out there…
My six year old daughter was diagnosed with GBS on June 23, 2006…I agree that IVIG is the “miracle medicine”…
She is in outpatient OT and PT…can you give me any advice to keep her motivated???
This came out of the blue and has just through us all for a loop…I have gone from being a confident parent to second guessing myself on everything…I just want our lives to get back to normal…
August 5, 2006 at 9:32 am
Dear Kim’s mom,
I know what you are going through.
PT and OT were hard for Becca too. The days that Becca had PT and OT her brother and I tried to make it a day out. We would go to the mall and walk (It is in the 100’s here in the summer.) Some time the therapists would let her brother join in on some of the PT games. One of the therapists suggested setting goals and rewards for each accomplishment. That worked with the big things, like walking and learning to more for her self, becoming independent again.
Also, when she was in hospital, Becca asked for a puppy. (The kids had wanted a puppy for about a yr).
The puppy was a good incentive. We told her she needed to get strong enough and work hard to be able to raise and train a puppy. You know a puppy at that time was the last thing I really wanted, but I am so glad we got the puppy. She has been a blessing to our family. The dog has become my watch dog. She watches everything the kids do. She also sleeps with Becca and keeps an eye on her so now I sleep better.
Last year I was contacted by another mom through GBS foundation. Since then our daughters have been pen pals. I know for Becca knowing another kid with GBS helps getting better too. It also helps the moms.
I read your post to my daughter and she would love to be a pen pal with your daughter.
Let us know.
Just know you are not alone.
Nancy and Becca:) 🙂
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