Children’s Liver Disease Foundation held its National Conference and Family Day on Saturday 6 October. The afternoon consisted of four parallel sessions covering various topics.
Helen Pattison’s presentation focused on ways to communicate and share information with your child surrounding their liver condition. The session identified a number of issues for discussion;
How much information should you give your child?
What questions does your child ask about their liver disease?
What do your other children ask about liver disease? How much do you tell them?
Do you make clinic appointments a special outing or is it part of normal life?
Do you let your child know about having a procedure like blood tests or is it just sprung on them?
Feel free to respond to these questions and join in the conversation...
Written by
Caitlin-CLDF
Partner
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Our daughter India is only 16 months so we're not in a place yet to discuss with her her billary artresia and what this means for her. There are some wee things we do however that start to build her sense of okayness with her illness and the implications of it. India is post transplant and so takes about 6 meds (a lot less than pre-transplant!) a day through plastic oral syringes. We often prepare her medication in her presence - not that she's that interested! - and let her play with the plastic syringes. She chews on them a bit and sometimes role plays by using them to pretend to give meds to her toys or teddies. We have a few books such as Miffy Goes To Hospital that touch on the subject of illness and treatment. We also have a toy doctor's kit that she enjoys playing with and this features some of the instruments she is familiar with in hospital - stethoscope, thermometer etc. It's all about helping her feel comfortable with her condition and to understand that there is nothing strange about it and she is not alone. As long as what you do is age appropriate I don't think you can start early enough. Would love to hear people's ideas for older children to help us prepare for supporting India as she grows up.
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