BWS Support
541 members183 posts

is it likely my gradson has bws

he was born 6 months ago spent 1 month in scbu speacil care unit as couldnt control his sugar levels to low not found reason why..eventually they let him home on medication for it 1 month ago they took him of meds then yesterday he had 4 seizures in row he went to hospital sent him home as bloods showed normal said prob reflux not seizure or something else and parents they were over reacting they 18 and 17 by way...hour later it happened again so kept in over night,saying blood sugars have been fine through night no more turns /seizures and no results from brain scan as yet so possibly getting home later today..

thing is his tongue though doesnt look large is more often out than in when he tries to to make sounds its out all time..hes got funny left foot stands to side of it..hes not to energetic for his age but does prefer to stand .when holding him... he looks much older than 6 month baby..ive not seen him for week or since ive heard about bws ive been reading up on it so not looked for creases in ears etc and other things ive read about..should i be concerned should i mention my thoughts to doc or my son as i dont want to scare them..????

1 Reply

I would always encourage families to talk to their doctor about their concerns. There are quite a few conditions that can cause low blood sugar and or seizures but it is certainly worth considering BWS, particularly if his tongue is possibly large and he is a large baby. Genetic testing is available now in the UK. Take a look at our website for more info Hope you get some answers soon.


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