Chicago Walk to Cure Psoriasis

Hi everyone! We have great news. Benjamin has been chosen to be the Ambassador for the Chicago Walk to Cure Psoriasis. He really thinks that he is the KING of the walk! The last few weeks have been a flurry of activity since we got the news. We've had an amazing photo shoot, followed by the walk kick off. Then in August we will be going to San Antonio for the NPF conference.

You can find a Facebook page for the even that has more pics, just look up Chicago Walk to Cure Psoriasis. You can also go to the NPF walk sites and search for Ben's team, Ben's Buddies and check out his walk page.

I hope we can see some of you in San Antonio!

Washington Bound ..

Hi Everyone! I thought I would post a start to our Washington Trip. I will be hitting the road Sunday morning with my two girls in tow. We're headed to Capitol Hill Day!

Carly and I have already met with Reps. Jim Gerlach, (R-Pa.-6th) several months ago. He is a sponsor of the PPARCCA, which was reintroduced to the House of Representatives last week. For more information visit: http://www.psoriasis.org/news/press/2009/090210_pparcca.php

I hope there will be more kids to meet in Washington and I wish you all were going to be there with us!

New to this blog : )

Hello,

I am a mother of a recently diagnosed six year old Olivia. I was told about this blog by the Health Educator for the National Psoriasis Foundation. I am so grateful that I found it. My husband and I are trying to create an environment that is conducive to Olivia's Psoriasis. Right away I noticed the importance of not treating Olivia any different because of this disease. She seams to be adjusting just fine actually.
We have started her on some Vit. Supplements. She is taking Vit. D3 and Fish oil chews, as well as daily Calcium to boost the immune system. I have no idea if these will help in the long run, but they couldn't hurt. We have also been experimenting with a wheat free diet. We purchased a bread machine; which is something we have wanted to do anyways, and are baking our own Gluten Free bread, and using that for her sandwiches.
So along with the diet changes we noticed that swimming and soaking in the tub help. We have put sea salts in her bath. We also are members of the YMCA locally, and Olivia loves to swim. I have always wanted to do Yoga as well, so we are maybe going to check that out together to promote stress relief. So while we have been prompted to explore a healthier life by Olivia's new condition, we are all benefiting from the healthy life changes as a family as well.
So along with diet and exercise we have been using topical creams given to us by our Dermatologist. They seem to be helping. However Olivia has began to get P really bad on her scalp recently, so we have started to use a serum from the Derm. that has been helping. We also purchased some Tar shampoo, I would welcome any one's views on that.
So far in school Olivia seams to be doing fine. She has stated that there are older kids who run away from her and say that she is contagious. I was sent some awesome Psoriasis cards, and a form for caregivers that is informative to explain to the kids what Psoriasis is. The Health Educator who e-mailed me is also going to send me a kit so I can present to Olivia's class what she has, and maybe all the classes that she has contact with. She is in a great school, and they have a community focus, so Olivia mingles with all the grades in her community room.
So far, while it has been really overwhelming, I have felt blessed to have found so much great information. I am also very grateful for this blog, and being able to show Olivia pictures of kids that are like her, living happy and free.

Thank you so much to whomever started this blog and all who contribute. It is a blessing to our family : )

Sarah and Olivia in Wisconsin

We need your input!!

I spoke with Nicora Gardner (NPF) the other day about this summer's NPF conference. The conference will be in San Antonio and as a Texas family we are thrilled! I think I will be bringing the whole family this year, even though it is still a good 9 hour drive (Texas is huge!!) I sure hope everyone will try and attend, Jake and I had a fabulous time last year getting to know everyone and having so many experts to address our concerns and questions too. As much fun as last year was, I think this year can be even better!! I would love to hear from you about some of your ideas for the upcoming conference. I know Nicora will be reading your ideas as well so here is your chance to let the NPF know what you and your kids would like to see happen this year.

I personally think it would be a ton of fun to have the kids track have a "summer camp" feel to it. I think Jake benefited the most from the bonds of friendship he experienced with kids like him. I like the idea of crafts, swimming, games, and maybe even a field trip to one of the many kid centered activities in the San Antonio area. Jake's biggest and best memories came from just hanging out with kids who also live with psoriasis.

What do you all think? What did your kids benefit from the most? Please post your ideas for this summer so that the Foundation can start planning things for our kids.

Thanks!!

Morris Girls

Hi Everyone! I wanted to post an update on the girls. They had a wonderful Christmas and have been feeling really good. We are still on the MTX injections. We were at Children's Hospital on Tuesday for a checkup. Katelyn's liver functions were elevated, but they aren't concerned right now. Katelyn is also flaring. She suddenly has lesions on her scalp that are reminiscent of Carly's scalp. So far it's responding to the topicals. Carly is doing great. She is still clear and maintaining the same dosage on her injection.

So ... I recently met with a photographer for the New York Times and did an interview with the girls about psoriasis. It was published online tonight and I'm mortified! There's something about seeing it that really hits home and brings back all those feelings from when we were first diagnosed.

Check out the link : http://www.nytimes.com/interactive/2009/01/15/health/healthguide/TE_PSORIASIS.html

I hope it is ok, I'm really not sure what to think?!

Jake update

Jacob went to Dallas to see his doctor last week and we were told he needed to increase his MTX to four pills a week. If we do not see an improvement in the next 3-4 weeks the doctor would like us to start Jake on cyclosporine a "rescue" drug to help him with his most recent flair up. The doctor's office is currently working on with our insurance to see if we can switch Jake to Enbrel. I think this will be a great switch for Jake if we can get approval.

On a lighter note are any of you planning on going to Washington D.C. for Capitol Hill day? I have gone back and forth on this one but I know it would be wonderful experience if we went. I think if you all are going to be there with your kids we would need to make the effort to go. I think Jake can use a little friendship and understanding right about now. It has been a rough year at school. The kids have been a little brutal and he is such a sensitive boy it really gets to him.

We hope you all are enjoying this holiday time with your families and loved ones.

All our love and hope for a fabulous 2009,

The Clement Family

How is everyone?

I know it is a busy time of year but I wanted to check in and see how everyone is doing? We are doing great! We've had a few checkups lately. We are still on our MTX injections, weekly. It will probably be the new year before they start backing the girls off the medication. Unfortunately they still have some lesions that haven't cleared.

I hope everyone had a great Thanksgiving .... Happy Holidays to all!

Chris