My niece was born deaf and with kidney problems and now at 10 months old has been told she has polymicrogynia which explains her seizures and fact she can’t swollow correct and why she has been drip fed milk for 4 days. I do find a lot on the internet but I never know if what I am reading is correct half the time
hi moogle star
have her parents been in touch with the local authority?
i used to work for wigan council as an advisory teacher for inclusion. any children with disabilities would be referred to us.
we had a portage service which is excellent for babies and parents.
a portage worker does home visits and draws up a plan for parents to do with the child. with weekly visits the parents can discuss their concerns and the portage worker will try to help.
it may be useful to enquire about portage in your area.
do you have a close relationship with the baby’s parents?
if so, ask them what they have been told.
i just googled polymibrogyria and saw a facebook page called polymicrogyria family support UK. may be worth a look.
Thank you ever so much I will tell them when they get home from work. The dad is my twin brother so very close. Thanks again x
Carole has given you some really good advice…glad we have her on board, eh?
That little girl is lucky to have such a loving, caring aunt, bless her.
aw thanks poll!
i miss that job but was glad to take medical retirement.
too stressful to deal with vulnerable children and families whilst struggling with cog fog.
moogle star i really hope that your brother manges to get some support with his little girl.