4 month old w/ GBS, now 20 months

    • Anonymous
      July 30, 2007 at 10:56 am


      I wanted to share my story about my dd who was diagnosed w/ GBS at
      the age of 4 months in hopes to shed some light on others who have
      infants w/ this disease. There was really not much info out there for
      me on anyone her age so hopefully this will be helpful.

      This all started following a virus known as coxsackie
      (hand,foot,mouth disease)which is very common in kids. She was
      running slight fever and had a swollen throat, but nothing to make us
      really worry. In the weeks following we noticed that she would scream
      when we would hold her, change her, and go outside the home. Although
      she was very young we noticed the head control that she had
      established had diminished and became very floppy. Since she was so
      young it was very hard to figure out what was going on and we didn’t
      even take her to the dr. until a month and a half later. After ruling
      out things such as cerebral palsy, etc. her pedi thought it was most
      likely GBS. We had never heard of such a thing, but once we did some
      research the light bulb went off.

      Now we knew why she only liked to be in her bouncer, untouched, and
      hated the sunlight. She would scream if anyone would softly touch her
      hand as people like to do to babies. She would not cuddle and was
      gradually not meeting the milestones for her age. I had no idea where
      to turn or what to do, what her future would be like, would she ever
      sit, crawl, or walk??

      I started her in physical therapy twice a week when she was 7 months
      old. She could not sit on her own and had very low muscle tone. She
      finally sat alone (but had to be placed in that position) at 9
      months. If she fell over she did not have the strength to sit back
      up. At 11 months she started scooting on her bottom as transportation
      and finally was able to sit from lying position. She was able to pull
      to standing at 14 months and after many months of therapy she took
      first steps at 17 months.

      Sophia is now 20 months and running and climbing. We are so grateful
      that she made a full recovery and was released from therapy this
      month. I do wonder if she has days where she feels residual pain, but
      only time will tell, and I am anxious for the day she will be able to
      communicate this with me.

      Feel free to e-mail me if you are going through this with your little
      one and need some support or have questions.

      Mom of child w/ GBS

    • Anonymous
      July 30, 2007 at 12:25 pm

      Oh Lauren God bless you and your dear Sophia. I have often wondered how in the world GBS is diagnoised in babies. What a nightmare. I wonder if she’ll have any memory or odd aversions once her communication abilities devlelop further. Even if she has residuals it might be hard for her to recognize or explain as in some cases they come on slowly and build (more fatigue more pain/burning feeling, etc.). She may just adapt and never realize that it’s not normal because she won’t have so much before to compare her “after GBS” to.

      I pray for her continued progress. I’m sure you’ll see her catch up to her peers in development and that this was a nasty road bump along the way. Thank God you were able to get her help.