terrified mama.

[chloesmamaxo]

so we went to the pediatrician and were told he'd like our 5 month old to get tested for BWS. I ran into an article about bws and brought up the tongue issue to my pediatrician if I didn't say anything I feel like it would have gone in-noticed. she has a tongue that will often protrude out of the mouth ( i did this when I was little), a stork bite on her forehead ( my sister has this ), a stork bite along her hair line ( I have this ). she is hitting all of her milestones. she's also in the 95 percentile but I was always large when I was little and so was my boyfriend. bws mamas & daddies does it look like she truly could have bws ?

[Vicky982]

It sounds like she has dome of the ' signs' that could indicate bws but only the test will confirm it. My little one has a protruding tongue and dents behind the ears this has given the professional s enough cause for concern to suspect he may have. I'm looking forwards to finding out Obe way or the other. If he has it i need to know more about what we can expect and how his health may be affected. Im sure if your little girl does have it you will be supported by the medical staff and on this forum. Good luck, whatever the outcome she is still the same little girl you loved and a diagnosis can help you both x x

[Amh22]

Yes, I do. Good luck! Start the protocol asap. AFP every 6 weeks until 4 years and abdominal ultrasound every 3 months until 8 years.

[Amh22]

Yes, definitely yes . Please read these articles.

stlouischildrens.org/sites/...

chop.edu/conditions-disease...

ncbi.nlm.nih.gov/pmc/articl...

Start the protocol asap. AFP every 6 weeks until 4 years and abdominal ultrasound every 3 months until 8 years. Good luck!

[BobBaker Administrator BWS Support]

Congratulations on your daughter. The genetic test should show whether she has BWS though around 20% of children with BWS don't get identified by the test. The clinical diagnosis of BWS is showing 2 of the 5 major characteristics:

1.Macroglossia (large tongue)

2.Unexplained hypoglycaemia (low blood sugar) in the first four months

of life

3.Ear creases or pits

4.Abdominal wall defect (including even a mild navel hernia)

5.Birth weight over the 90 – 95% (adjusted for prematurity if relevant

Please note that I am not a medical professional. just a parent like yourself.

BWS is generally an optimistic syndrome though the children vary considerably. Our son has BWS is now 34 and has three lovely children of his own with a fourth due in three months.

Hope this helps and all the best for the future.

Bob Baker

BWS Support Group UK