Hi,
I have a 4 month old baby (actually 7 months old but was born 3 months prem) who has central DI. We currently manage his medication needs with bidaily oral DDAVP of 15 mcg. I do not know any other people who have DI themselves or specifically babies with DI. I am very keen to hear of other families, partic in Australia, with DI.
I have found little support so far and have turned to the internet to try and join a support group and find other families in a similar situation to us. I have so many unanswered qus about Max’s DI. Some qus are answered by our drs, but many are still churnig in my head. Is it best to take DDAVP pre or post feeds? Do other babies need to remain with a wee rate of roughly 4ml/kg/hr? Our son is often over this and this is how we judge when we need to readminister medication. Can you have a flare up of DI for no other obvious reason, eg UTI, cold, flu, etc. Do many babies have daily or weekly bloods to assess their sodium balance?
If there is anyone in a similar situation, or you can answer some of the above qus, I’d love to hear from you,
Shell5