Tuesday, May 13, 2014

PWS Q and A

PWS question of the day  How did/do you balance the needs of all four kids when so much time goes into Ayden Jane?

Honestly, at first there was no balance. It was all AJ all day and I missed my big kids. I loved my little bundle but at times I just wanted to forget PWS. Of course that would mean I'd have to forget her... It was a struggle.

It was rough on them at first because I cared for Ayden Jane and Gary worked more because he had to. So in a way they lost a lot of time with both of us. Friends and family pitched in and took them places and made sure they were able to attend soccer tournaments and volleyball matches. They took care of each other and were amazing.

They loved their little sister and each contributed in their own way which helped them and us. Kayla was second mom. She learned all she could about PWS and how to care for Ayden Jane. She could even do a feeding tube if the need arose. Noah loved AJ, but when she was tiny he helped more by asking me what I needed. It was truly such a relief to know that I could count on him and that he was looking out for me. Mckenna was magic when Ayden Jane was a bit older and began therapy. She could get her to work so hard, so long and not even know it was work.

So, I guess as we transitioned to emergency mode at first, I did not really balance things but others took care of that. As the long term 'marathon' set in, we divided some of the AJ work naturally using everyone's talents. I think being a part of the mission of caring for AJ and each other was great for everyone. Eventually we just slipped into our new normal and did our best to meet everyone's needs. Hopefully there was some balance in it:)

A couple of questions combined - Do you follow a specific diet with Ayden Jane? How do you decide what and how much she can eat? Dark chocolate is permitted as a treat, what makes it ok?

Ayden Jane does not follow a specific named diet. I would say it is closest to a modified atkins or a paleo type diet. As Ayden Jane has grown we have tried things and her response in energy and behavior has helped us hone in on the foods that work best for her body and the best balance for her.

When we first started feeding Ayden Jane she was not yet diagnosed with PWS. We started with infant cereals in the classic american way. She packed on lots of weight, which was almost a relief at that point, but she did not grow. She was was not lively. 2 months later she was diagnosed because the growth curves crossed and she was more 'PWS like'.

I sort of went out on my own by reading and researching and I noticed the link between cereals and AJ. I threw them all out and gave her avocado and eggs and almond butter and cottage cheese and .... She leaned out because she grew. She became more alert and active. Her personality burst forth and within 2 months, even before we got gh started, she was back to her proper ht,/wt. percentiles. Her developmental milestones did not seem so far away. From 8 months at diagnosis she was not able to sit up independently. With her new fuel, 2 months later she was sitting and crawling and into everything. By 12 months she was standing. The rest of her developmental milestone came within typical range or close.

Basically, we avoid all grains (as they are mostly carbs) and sugar. I did not know that this was radical. I just knew that her body was obviously not using them properly. I learned a lot about our need for dietary fat and in particular the need for young children with growing neurological systems need for lots 
the need for young children with growing neurological systems need for lots of good dietary fat. She responded to these foods very well. By the time I saw Dr. Miller and other PWS specialists Ayden Jane was 2 and they were amazed with how typical she was. They did an analysis of her diet and said that it was unique but that it covered all her nutritional needs and was allowing her to eat a lot more calories than expected for PWS kids and actually more than a lot of typical kids. In fact, her weight was so low they said that if I could manage to get her to eat a few more calories that would be great!

We just stuck with the same formula. The how much is tricky. When she was tiny, I felt like all I did was feed her and try to get enough calories in her. Now that she is older, I work to make portions small because she will over eat since she does not really have a natural off switch.
As it come to treats, dark chocolate is one we introduced early. Basically dark chocolate (70+ cocao) is higher in fat and lower in sugar. She gets just a small square but is content with just that while everyone else eats a piece of cake ect. She does not seem negatively impacted by these so we just go with it.

1 comment:

  1. Hello. Thank you for sharing your story with such honesty. I'm the mom of Lauren who is 34 today. She also has PWS. I enjoy hearing optimistic stories from families like yours.