Survey Results

In the fall of 2008 I started a survey among those with EB or who had children with EB to get an idea of when kids with EB, walked, crawled, and other milestone that all kids experience. I kept adding data as people were willing to share. As of March 2009, apx 75 patients participated in the survey. Here are the results.



The average age for EB as a whole:

Rolled over: 6-7months

Sat unassisted: 7-8 months

Crawled: 11 months

Pulled to a standing position: 13-14 months

Walked: 23-24 months

Got 1st tooth: 8 1/2 months

Began sleeping through the night on a regular bases: 18-19 months

Length of hospital stay after birth: 28.1 days

Received some type of therapy (OT, PT, speech,feeding): 51% of those survey did

Found it to be helpful: of those 51%, 28% found therapy to be helpful

Suffer from reflux: 69% yes; 31% no

Are lactose intolerant: 18% yes; 72% no

Have/had a G-tube: 32% yes; 68% no

Age they received a g-tube: 20.4 months

Issues with constipation: 59% - yes; 41% no

 
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I re-did the survey in 2020 and these were the results: 

EB Development Survey Results:

 

63 total participants

 

42 have EBS

9 have RDEB

9 have DDEB

2 have JEB

1 has an unknown form of EB

 

Reflux:

60% no

40% yes

 

Gtube:

90% no

10% yes

 

Constipation:

46% no

54% yes

 

Received OT, PT or other therapy:

47% no

52% yes

 

Of the 52%

Did you find it beneficial?

57% yes

25% no

19% maybe

 

Lactose Intolerant?

90% no

10% yes

 

Average Age in months for:

 

Sleeping thru the night: 14 months

 

NICU stay after birth: 13 days

 

First Tooth: 8 months

 

First words: 16 months

 

Walking: 20 months

 

Standing up: 15 months

 

Crawling: 11 months

 

Sitting unassisted: 7.4 months

 

Rolled over: 5.5 months

 

I was hoping to break each item down by type of EB, but not everyone answered with their type/subtype, so I wasn't able to get an accurate breakdown. Some of the results did surprise me though- particularly the reflux one. Perhaps I should have listed it as silent reflux. But no matter, these are interesting none the less. Thank you those who participated

Just like with healthy children, all EB children are different and some will do things sooner or later than the average child with EB. I hope this will give parents are idea of when they might expect their child to reach a certain developmental milestone and not to worry if their child is a little bit behind other kids their age. 

 

©Garrett's House 2021