4 month old w/ GBS, now 20 months

Hello,

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
her
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.

Lauren
Mom of child w/ GBS