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[iammillie]

Hi I am new to the site, you have to excuse my lack of knowledge re: abbreviations. I will try to keep up. My DS was born in April and diagnosed with PWS (Prader Willi Syndrome). He was 9 weeks premature but he is doing not too bad so far. Im on here just to read/swap stories ect with other parents and hopefully learn something. Any other parents on here with PWS children? let me know if you fancy a chat. thats all for now. thanks

Hi iammillie, hope you enjoy the sn board & get lots of support.
My ds2 was born 12 wks prem & has mild CP & Autism.

I don't have any experience of PWS but just wanted to say hello and welcome to the SN board.

thanks for the hellos, mymatemax, how old is your ds2? my cousing has 2 boys both autistic and 1 of them was 12 wks premature. how is he doing and what is CP? hope to hear from you again

iammillie, ds2 is 5 & CP is cerebral palsy, he has just started at the local primary school & is doing well, he wears splints to help with walking & has some fine motor problems, his upper body is floppy with low tone & his legs stiff. He is mostly a very placid little boy but can be very anxious & is very rigid with his routines etc, I could bore you about him all day
I also have a ds1 age 7 with no problems other than being a 7 yr old boy
I don't know any children with PW but I know an adult with PW, actually a lady at work.
She has some learning difficulties but has worked there years & is a very popular sociable lady with a passion for shopping, she is always beautifully dressed.
Good to hear your ds is doing well

hi mymatemax,
i love getting bored about other folks kids as much as i love to talk about my own ds. thanks for your message, it gives us great hope when we hear about others doing well with PW and the future does look more promising especially being diagnosed so early.
When my ds was being tested I thought CP or muscular dystrophy was what they were looking for as they are the conditions I had heard "floppy baby" being a symptom.

hope to hear from you again and would love to hear about your boys.

Hi iammillie, my daughter is 3 yrs 8 mths and has PWS.

Despite a very rocky start she is doing really well and amazes me every day.

Hi Sidge,

My son is doing really well apart from poor muscle tone especially his upper body but we are starting to getting more help from the physio. Is your daughter walking? Do you go on the PWS websites? Hope you dont mind me asking has she started Growth Hormone?

thanks in advance
Ann-Marie

Hi Ann-Marie,

I am glad your DS is doing well. My DD is on GH, she started it at 13 months and I personally think it is the wonder drug for children with PWS!

She sat at 12 months, crawled at about 19 mths, walked at 28 mths (albeit very wobbly).

She has such low tone that the paeds couldn't believe she walked at all - they thought she wouldn't sit till she was 2! (she likes to prove them all wrong )

She was on oxygen for her first 12 mths and NG fed until 18 mths, she still can't talk as her tone in her upper body is still very low but the GH has helped her enormously.

I do visit the PWS websites and am a member of the forums, but find them very quiet. If you want to chat more I am happy to email you.

Hi Sidge,
My ds came home with NG tube but we stopped using it on his due date and he has managed bottles since then, now doing well on solids. The physio is trying to get him to sit but he just screams the whole time, we are getting a special chair from her next week to try and strengthen his upper body. your dd sounds great, always like to hear about kids doing better than expected. Id love to hear more about her if you dont mind. one thing ive realised from going on the various sites is that no 2 children are the same. Our HV thinks my ds is doing so well as everyone forgot to tell him he has PWS.
my email is [email protected] hope to hear from you soon