Oxytocin and PWS

At the most recent Foundation for Prader-Willi Research one of the presenters spoke about people with PWS having elevated oxytocin levels, a hormone that is associated with breastfeeding and bonding between mother and baby. It is often referred to as the "love hormone."

When I learned about this research at the FPWR conference it explained alot about Ellie. She loves animals and babies so much I call her my little mama bear. She is very concerned and tuned into other people's emotions and worries if she thinks someone is sad or hurt. She is so gentle and loving with her cat, dog and little sister.

Although these oxytocin levels being high may cause unwanted side effects, I do love how compassionate my sweet little 4 year old is for people and animals. This is one PWS side effect that I can appreciate. Below is an article about 12 year old Megan Deines, with PWS, who shows her compassion for animals every year on her birthday.

Do you find that your child is exceptionally compassionate? Does he/she seem to connect and bond with animals and babies easily?



by Maggie O'Mara

See all 11 photos »

BOISE -- Giving comes easily for one 12-year-old girl in Meridian.
For the last four years, Megan Deines has asked for pet food donations instead of presents at her birthday parties. Why? She just loves animals and wants to help local shelters."I'm really into animals and I love them ever since I was little," said Megan Deines as she unloaded pounds of pet food at the Meridian Valley Humane Society. Megan has quite at few pets herself.  She has two bunnies, two dogs, and three cats.
At her last birthday party, she asked for dog and cat food. "The animals and shelters really need help," said Megan.  "I would get toys that I didn't need." She's been asking for shelter donations instead of birthday gifts at her parties for four years now. "I think her friends are pretty impressed that she does this because they can't imagine themselves giving up birthday presents," said Megan's mom, Laurie Deines. Megan has Prader Willi syndrome, a rare genetic problem that causes her to never feel full. "They always feel hungry and they would always like too much to eat," said Laurie.  "They have to live with very restricted diets, and constant supervision." Instead of focusing on food, Megan focuses on animals and helping them.
"She's always had this extraordinary connection with her pets," Laurie said.  "I think it just comes naturally to her." Megan also donated cash to the shelter. "I just love this, the idea that a child would give up birthday gifts to take care of animals in need," said Connie Petersen at the Meridian Valley Humane Society.  "I think it's just amazing that she would even consider doing that." "I don't think there is any way we can get her to stop doing this, I think this will be a yearly thing," said Megan's mom.
Young Girl Hero to Pets in Need

Idaho's NewsChannel 7

Posted on March 7, 2011 at 8:08 AM

Mother Warrior

Today Keegan posted a piece about The Power of PWS Moms. This article brought me back to a conversation I had with a woman who lives in my neighborhood. She was organizing the annual neighborhood garage sale. I had never met her before but I called her and explained that my daughter has PWS and I am hosting a fundraiser. I asked if I could put my Go the Extra Mile fundraiser flyer on the back of her garage sale map. She was more than happy to help and invited me over to her house to discuss further.

While I was there I explained what Prader-Willi Syndrome is and how it is, and could, impact our family. She then told me about her infant son that died 20 years ago after receiving his 2 month immunizations. He suffered a fatal allergic reaction. After she worked through her grief she began lobbying for increased awareness of these side effects even appearing on 20/20 and testifying for congress to discuss the topic.

She then looked at me and said something that has stuck with me ever since....She said "We are Mother Warriors....you are a mother warrior for your daughter."

When we received Ellie's diagnosis almost 2 years ago I vowed that I would do everything in my power to make Ellie's life the best it could possibly be. To me, this means raising money for research. I want to get as much money to the researchers as fast as possible so they can research faster. I became a mother warrior the moment she received her diagnosis. I am engaged in a battle against the effects of Prader-Willi Syndrome.

I am Ellie's mother warrior....I always will be and will keep fighting for her independence by raising money. I am not a scientist so I can't find the cure myself so the next best thing, in my opinion, is to do as much as I can to encourage researchers to dig deeper into this disorder until a cure is uncovered.

(Shawn and I after our first run/walk: Such a proud moment for us)

I choose to raise money as my way of working through this diagnosis, I choose to contribute to her future, "I choose to believe!"

How do you deal with the diagnosis? How do you express yourself as a Mother Warrior? (Or father warrior:))

Celebrity PWS mom??

Shawn and I have often said that we need a celebrity in the pws 'world.' Not that we want a celebrity to have a child with PWS but it would be nice to have someone in the public eye get the word out there to increase awareness and fundraising efforts. Today I came across this article about a woman named Katie Price from the UK. The article states that she may have signed a movie deal with Paramount Pictures to film her life story. It states that she has a son with prader-willi syndrome.

...part of the article can be found below....

Does anyone know who this is??? Do you think having a 'celebrity' connected to Prader-Willi Syndrome could help further our cause? If so, how do you think it would be helpful?

Katie Price and Harvey have some Mummy and Me time in LA as she prepares to sign up for a movie about her life

By Daily Mail Reporter
Last updated at 8:52 AM on 28th February 2011

She suddenly removed her two youngest children Junior and Princess from the public eye late last year.
But those rules don't apply to Katie Price's eldest son Harvey who has tagged along with his mother on a trip to Los Angeles.

The eight-year-old, who Price said in an interview this week is exempt from being hidden from the media, accompanied the model to a Sunset Tan salon before the pair picked up food at Mel's Drive Inn.

Quality time: Katie Price picked up some food with her son Harvey and brother Daniel at Mel's Drive Inn in Beverly Hills

Katie told the Evening Standard that she didn't want to include her children with Peter Andre on her latest show because they were getting to the age where they understood what fame is.

The 32-year-old said: 'They’re at an age now where Junior is like, "Mummy, I am famous. Kids at school say I am not famous but I am," and I thought, from those remarks, that it’s time to take them out.

But she does not mind Harvey, who has a condition called septo-optic dysplasia as well as autism and Prader-Willi syndrome , being photographed or filmed because apparently, 'He has no idea about any of it.'

Read more: http://www.dailymail.co.uk/tvshowbiz/article-1361239/Katie-Price-Harvey-spend-time-LA-prepares-sign-life-movie.html#ixzz1FgnsXDJd

http://www.dailymail.co.uk/tvshowbiz/article-1361239/Katie-Price-Harvey-spend-time-LA-prepares-sign-life-movie.html

PWS Siblings

As some of you know, we welcomed our second child into our family almost 4 months ago. Even before Shayna was born I have worried about how having a sister with PWS would impact her life. I like to think it will build character in her and we hope that we will raise her to be secure in herself and in her love for her sister.

I know many people bring their families to Florida to see Dr. Miller. When we called about a year and half ago to be a part of her research study we were told that it was a sibling study. At that time Ellie didn't have a sibling so we couldn't participate. Now that Shayna is here we are thinking of calling again - mainly because we really want to meet Dr. Miller and for her to meet Ellie.

Have you participated in this study? How invasive is it on the children? What is she researching? Do you believe it is important for PWS families to participate in research studies?

Making Connections

Yesterday we started promoting our latest fundraiser. Local kid's musician, Johnny Only, has offered to donate 75% of his on-line sales for the next 2 weeks to FPWR. This is so generous of him and a great opportunity to raise money for FPWR. To advertise, we printed our flyers and gave them out to the parents at Ellie's pre-school. Today one of her classmate's mom called me and was excited about the funsraiser and then wanted to know more about PWS. We then spent 45 minutes talking about our children and how her son has autism but she is not sure if there is maybe something more going on. After the call I realized that this fundraiser was not only a great way to raise money but also a great way to build awareness about PWS and connect with other families with children with special needs. Since Ellie's diagnosis I have not only been amazed at the connections I have made with other PWS families but also with other families with children who have all kinds of special needs.  We were a little nervous about putting out the flyers because now all of the parents would know that Ellie has PWS. We are not in any way ashamed of her diagnosis but it has been nice for us to go to birthday parties and Ellie could just be Ellie - not the kid with PWS. Now everyone knows and her and our ananimity is now gone. But with that comes awareness, understanding and deeper connections with the other parents.

I guess what better way to explain PWS than through a fundraiser :)

Have you ever organized a fundraiser? Did you find that your circle of friends grew as a result? How do you handle building awareness and fundraising without 'exploiting' your child's diagnosis?

Carnitine and CoQ10 Study

I started this blog to not only document our fundraising efforts but to think about various research that is taking place and hear what all of you think about it too. Research into PWS is the whole reason behind all of these efforts....we are so hopeful that if we all band together and fund the research that sooner rather than later there will be solutions to at least some of our kids struggles. For me, I would be happy with a cure to the hunger if nothing else - but I will take whatever I can get :)

I saw this article posted today and I read through it - a few times. It took me a few read throughs to feel like I understood the findings (I think). I want to understand everything about my daughter's condition and the best ways to help her but this type of material is not natural for me. Hoping all of you can help add to my understanding.

Does this mean that carnitine and CoQ10 supplements may not have an impact on our kids?

I don't have Ellie on Carnitine or CoQ10 supplements. Do you have your children on them? Do you think it is helpful? How so?


Abstract
Carnitine deficiency or coenzyme Q10 (CoQ10) deficiency may present with
hypotonia, poor growth, easy fatigability, and apnea. This constellation of
findings can also be seen in individuals with Prader-Willi syndrome (PWS).
Animal studies indicate that increased fat mass due to obesity negatively
correlates with both carnitine and CoQ10 levels in skeletal muscle. Increased
body fat and obesity are characteristic of individuals with PWS. Currently,
there is no documentation of serum carnitine levels, and only one study
investigating plasma CoQ10 levels, in individuals with PWS. Fasting serum
carnitine and plasma CoQ10 levels were measured in 40 individuals with
molecularly confirmed PWS (ages 1-27 years; 19 F/21 M), 11 individuals with
early-onset morbid obesity of unknown etiology (ages 3-13 years; 5 F/6 M), and
35 control siblings from both groups (ages 1-24 years; 19 F/16 M). There were no
significant differences among the three groups in either total carnitine, free
carnitine, or CoQ10 levels. However, individuals with PWS had higher serum
levels of carnitine esters (P = 0.013) and higher ester-to-free
carnitine ratios (P = 0.0096) than controls suggesting a possible
underlying impairment of peripheral carnitine utilization and mitochondrial
energy metabolism in some individuals with PWS. Serum sampling identified no
significant differences in total and free carnitine or CoQ10 levels between
individuals with PWS, obese individuals, and sibling control groups. Muscle
biopsy or measurement in leukocytes or cultured skin fibroblasts could be a
better method to identify abnormalities in carnitine and CoQ10 metabolism in
individuals with PWS than peripheral blood sampling. © 2011 Wiley-Liss, Inc.

Copyright © 2011 Wiley-Liss, Inc.

Here is the link.....

http://www.ncbi.nlm.nih.gov/pubmed/21337696

Johnny Only CD Fundraiser

I have been thinking alot about what my first post on my new blog would be. I decided that since this blog is about funding a cure for the effects of Prader-Willi Syndrome than what better way to start then with a fundraiser. I plan to write about my adventures in fundrasing and PWS related research.

Johnny Only, a local kid's musician, has offered to donate 75% of his on-line sales from March 1st - 14th to the Foundation for Prader-Willi Research in honor of Ellie's 4th birthday! Yay!

Ellie loves Johnny Only. Since I brought her to her first Johnny Only concert this past summer, Shawn and I have been listening to his music during every car trip (sometimes when Ellie isn't even in the car:)). The best way to describe his music is a kid's songs mash up. It's like Glee for pre-schoolers :)

 I called Johnny about a month ago to book him to play at the Go the Extra Mile event this year. After describing the event to him he immediately agreed to perform. A couple of weeks later we brought Ellie and Shayna to one of his concerts and we introduced ourselves to him. He had been thinking about our cause and wanted to help and asked if we wanted to team up to sell his CD's to raise money for FPWR, just like that we had another way to help FPWR.

This is a fun way to celebrate Ellie's birthday and a great way to help fund research. Plus, you get to watch your kids dance to some really fun music!

Please check out his website http://www.johnnyonlymusic.com/