Shwachman-Diamond Syndrome Fundraiser

I haven't done much fundraising for Shwachman-Diamond America this past year, so I've decided to donate all the proceeds from sales through my Stampin up! website from now through Christmas to Shwachman-Diamond America. Shwachman-Diamond America has done great things this year. SDA supported the North American Shwachman-Diamond Syndrome Registry whose website went live this year, they supported Camp Sunshine with a small donation, paid expenses for Dr. Harris to present grand rounds at Wake Forest, just approved an $8,000 USD research grant and approved a minimum of $8,000 USD to support the Sixth International Congress on Shwachman-Diamond Syndrome in NYC next year.

SDA would love to donate more to the Congress, but in order to do that, SDA needs to raise more money.

Please consider helping the cause. Stampin Up! Sells great scrapbooking, card making and crafting items. Their products make wonderful Christmas gifts, too! No special promotion code needed..... I will donate all proceeds from on-line sales now through Christmas Day to Shwachman-Diamond America. Just visit http://www.pattiecurran.stampinup.net/  Here's a picture of a card and matching luminary I made over Thanksgiving. I gave a set like this to a friend as a small gift and she loved it! You can learn to make the luminary on my video tutorial website Twosday's Techniques.

Appetite Stimulants & Resources for Children who refuse to eat

Some children with Shwachman-Diamond Syndrome eat like there is no tomorrow and others barely eat at all. Some children will be put on appetite stimulants in hopes they can gain weight.

Periactin is an antihistamine that also helps with migraine headaches and increases appetite. Megace is a steroid that is used as an appetite stimulant. Below are links for more information on the two medications.

Megace Periactin

This is another topic we often discuss on the Shwachman-Diamond Syndrome Support List When my Sean was little, theywere considering a feeding tube, even though he was getting enough calories. Our GI at the time felt if we could stimulate his appetite, maybe eating moe would help. It was a very confusing time. If you have a child with Shwachman-Diamond Syndrome who refuses to eat, you might want to try a book written by Joel Macht, PhD titled Poor Eaters: Helping Children who Refuse to Eat I read this book many, many years ago and found it to be helpful. Something to keep in mind: take what you can use and forget about the rest. Dr. Macht works with children who are tube fed and he has a program to get them eating. The book is made up of case reports and what helped each child to eat. I found quite a few tips that we were able to use, but also found a lot in there that were not helpful for our situation.

Please remember, if you purchase books on-line, please use the iGive link on the top right-- items don;t cost you any more than they normally would, but a percentage of your purchase goes to Shwachman-Diamond America You can also use Goodsearch and shop through Goodsearch to raise money for Shwachman-Diamond America THANK YOU!