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Prader Willi Syndrome

16 replies

Bramble29 · 22/06/2021 07:56

Hello, my daughter has been given a diagnosis this week. She is 3 weeks old, we will hopefully go home soon. We love her so much but are very scared. Has anyone got experience of this? Has anyones children been diagnosed with PWS?

We have reached out to PWSA and awaiting reply.

OP posts:
Ozanj · 22/06/2021 08:07

We have a child at my nursery (I work in a toddler room) with Prader Willi. There are, thus far, ways to manage her appetite. For example she eats seperately, her meals are bigger with a higher protein and veg content than other kids her age, and our focus with her (agreed by a local SN school) is on physical activity to hopefully build habits as she gets older.

I should point out that she isn’t overweight and rarely tantrums. She’s a delight actually - so friendly and loves making friends. So please don’t be scared. You just need the right support.

Sidge · 22/06/2021 08:14

Congratulations on your baby!

My daughter has PWS. She’s 17. Feel free to PM me.

PWSA are brilliant, hopefully they’ll be in touch soon. In the meantime breathe, treat her like any other baby and take it day by day!

Bramble29 · 22/06/2021 08:35

Thank you for replying! I just want to try and make sure we are doing everything we should even in these early days, this is very overwhelming.

Thanks I'll try and PM you, new to all of this.

OP posts:
PaulGallico · 22/06/2021 20:39

Congratulations - my son is 17 and has prader willi syndrome. I will PM you (just need to work out how to do it first).

Naomixjade95 · 04/07/2021 23:09

Hello, my daughter is 4 months old and also was diagnosed with pws at 3 weeks old. Please don’t worry things get better!

She came home out of the nicu at 6 weeks old with a feeding tube. 3 days later it was removed, she took all her bottle and hasn’t slowed down since! She’s now holding her head up.

Enjoy the cuddles. Pws is a spectrum disorder, every symptom is on a spectrum, the child may get some or little. We don’t know yet.

I know the feeling of a new diagnosis of a newborn, my daughter is my first child and we were so upset by how the doctors presented pws to us. But we wouldn’t change her for the world. She’s a smiley happy little girl, she’s very vocal and always giggles at us.

You got this!

Bramble29 · 05/07/2021 06:49

Thanks NaomixJade95!

That's amazing your wee one is holding their head. Our little girl is getting strong arms and legs but has a very floppy head, she is now 5 weeks old. Is there anything other than some tummy time that you did?

Can I ask if she was as always smiley/giggly? Our wee one is chilled and makes lots of the cutest sounds and faces but not sure giggles and smiles to us or responds to us necessarily...but I might be reading onto everything.

Thanks again for replying!

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Naomixjade95 · 05/07/2021 10:00

She didn’t start smiling till she was 6 weeks old, she had her first giggle at 8 weeks. But she is very chilled herself. Very content. She doesn’t often cry. But she can cry. I see people say they don’t cry due to the low tone. But she’s had a set of lungs on her the minute after she was born.

We did a lot of tummy time on us as she wouldn’t tolerate it on the floor with the pillow underneath her, she still hates tummy time to this day. We still do it daily to improve her muscles, and also side laying.

She holds her head for long periods but sometimes she gets lazy, it’s the low tone they get exhausted faster.

My girl didn’t have low tone in her arms and legs it was only central such as neck/back

But in her first week she didn’t move much at all. Don’t worry your little girl will get there. Each child with pws is different.

All the specialist have told us our girl is developing well, she just has a slight psychical delay. So we have pyhsio every 3 weeks until she’s abit older and then it’ll become more regular.

We also see speach and language, we have portal support, and we see the endo in September for Growth hormones. Which is a game changer for pws kiddos, helps the muscle mass and cognitive development.

Bramble29 · 05/07/2021 10:26

Thanks that's really helpful! Yes we do lots of tummy time on us too, but she seems to enjoy it and just nod off with cuddles.

When did you start Physio we keep asking about it but have been told it won't be for a wee while.

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Naomixjade95 · 05/07/2021 10:28

Just thought I’d mention are you on fb there is a group for pws babies and kids for UK/Ireland if you’re not already apart of it. There is other groups too if you’re not from the Uk :)

Naomixjade95 · 05/07/2021 11:13

We didn’t start pyshio till she was 3 months we kept asking and pushing for it. She’s only done 2 sessions up till now she’s got her 3rd one next week

Bramble29 · 05/07/2021 11:39

Im on Facebook, I was told about the group but can't seem to find it, could you send me the link possibly?

Ok that's good to know, we will try and do the same! It's great to talk to others who have experienced the same so really appreciate your reply!

OP posts:
Naomixjade95 · 05/07/2021 19:18

I believe one the admins have you add you, if you like I can add you on fb and ask an admin to add you to the group, just PM me :)

deeds · 03/01/2023 21:14

Hi, our 2 week old baby has just been diagnosed with prada willi today. How is everything going for you all? We are feeling very overwhelmed right now. Baby is still in NICU and it's been a very difficult 2 weeks.

Sidge · 03/01/2023 21:51

Hi @deeds and congratulations on your new baby!

Take heart in an early diagnosis as it should mean a lot more support and treatment. Just take one day at a time and try not to think too far ahead.

Contact PWSA-UK, they are incredibly helpful and supportive and can give you a lot of guidance, support and advice. The website is www.pwsa.co.uk.

My PWSA baby had a very rocky start and wasn’t expected to survive a week. She’s now nearly 19, at a special needs college, slim and healthy and doing brilliantly. ☺️

Bramble29 · 04/01/2023 08:48

Hi firstly congratulations on your beautiful baby!

We are about 18 months in and honestly once we got home from the hospital it's been nothing but joy (apart from wishing for more sleep I suppose)

There are challenges but I didn't think I would feel happy again, It was the lowest point in my life, which is horrible to say after having a baby. The diagnosis was so scary though.

There is a Facebook page o can add you to if you want for under 5s and it's amazing support.

I'll try and figure out how to s nd you a DM?

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deeds · 04/01/2023 12:37

Thanks for replying

I can totally relate to feeling like we will never be happy again and feeling the lowest I've ever felt in my life. The last two weeks have been absolutely awful at a time when we should be in newborn baby bliss.

Thanks for the DMs sorrry if my replIes are a bit all over the place.. I'm a bit all over the place in general.

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