Hello!

Hi!!!I'm new at the group!!+My daughter was diagnosed with BWS she is 7months old now!!!I'm so happy to found this group !so looking forward to learned more

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  • Welcome Jomalou. Hope your daughter is doing well. Let us know what information you need.

  • hi!!Thank you!!She have enlarge Tonge but not so big.Im wondering if we just let her outgrow it...or 8t will affect her speech ot its gonna bother is she will grow teeth...she is teething right now...and also she have 5cm different leg length as well 1size shoe different...

  • thanks again!

  • Regarding her tongue she needs to be seen by a paediatric craniofacial team who can assess whether or not she needs tongue reduction surgery. If she does need surgery and it isn't done it can effect speech and teeth and jaw development. In the UK BWS children with macroglossia are evaluated at Great Ormond Street Hospital generally between 6 and 18 months old. There is some useful information on our website bws-support.org.uk that may be helpful to you. I'm afraid I don't know what the situation in Canada is.

    Regarding her leg and shoe size differences again she should be assessed by a peadiatric orthopaedic team. Some children with uneven growth in their legs have surgery to stop one leg growing whilst the other catches up. It sounds gruesome but is relatively straightforward with good outcomes and recovery.

    My son has BWS and had tongue reduction surgery at 20 months and surgery on his legs at 14 and is doing really well. He is tall at 6ft 5 but handsome and doing well at school. So don't loose heart. The vast majority of children with BWS grow up normally to be healthy adults. 

    Do make sure your daughter has had a genetic test to discover which subgroup of the BWS she has, as a small percentage of BWS children need regularly monitoring as they have an increased risk of some tumours.

    Take care and remember to enjoy your lovely daughter and try not worry all the time. 

  • Oh thank you so much!!!I really appreciate everything....I will look for that and I will ask the Genetic doctor at sick kids looking after her....yes she have cyst on her pancreas and her organs or larger than normal size...God Bless!!

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