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

New Member of the Morris Family

Hi Everyone! I hope you are doing well.

Katelyn is fighting a sinus and ear infection. This is the 3rd in two months. The Dr's are waiting for some tests to come back. We will go on Monday evening to get the results. I'm figuring between her allergies and her MTX imune supression, this was bound to happen.

Katelyn has been great though! I wouldn't have known she actually had this infection, had I not called because of her chronically runny nose. She hasn't complained one bit.

Anyway .... we got a new Puppy! I have had my eye on him for months. He's a 5 month old Miniature Schnauzer puppy. He's just the sweetest thing. The girls are so happy, it may be one of the best things I could have done for them. Katelyn jumps out of bed every morning (ok almost every morning) ready to walk "Scruffy".

I hope everyone is doing well! We had to share our newest member of our family!

The Morris Girls

Hi Everyone! I can't seem to get the girls to slow down lately! They are doing well and really miss their PS friends! Between school and Dance, they have little down time. Katelyn does Ballet two days a week, she really loves lyrical ballet. That's interesting to see for a girl who's so full of energy! She just joined a Detective Club at school and started swimming with her 3rd grade class. Ooh, did I mention she has Brownies once a week too! :-) Carly does tap/ballet 1 once a week, along with Daisy Girl Scouts. She loves kindergarten and all her new friends.

We traveled to CHOP this week (Children's Hospital of Philadelphia) for Katelyn. She is in a ADD study and had a check up. She is doing really well. Tuesday we head back to check up on our Psoriasis. They look great and have continued the Methotrexate injections. Tuesday I think we will have blood work and start lowering the dose to back them off the MTX. WISH US LUCK!

I hope everyone is have a great time at school and doing well with their psoriasis ....

Benjamin's P

Hi all. It's been way to long since I've visited here, so I figured I owed at least a little post. Thanks Liza for steering me!

Benjamin is well into the school year and is having a great year. His goal this year was to have perfect attendance. I thought it quite lofty given his P flare ups, drs appts, etc, but he really wanted to try. Unfortunately, yesterday that plan was derailed! And not from P! Ben has been home for two days now with a fever and vomitting. Nothing seems to want to stay down. We saw his pediatrician yesterday and to my disgust, he basically did nothing. So here we sit in bed, still fighting this bug, but well enough to play xbox!

Benjamin is also busy in soccer this fall. His team hasn't been doing so great, but he is enjoying every minute of it. He actually scored his teams first goal last week and is still in heaven. His older brothers are in fall baseball, so our weekends are filled with sporting events.

Benjamin's P: As many of you know, Benjamin has had pretty severe psoriasis, but never has been on any biologics. He has been lucky enough that his P has only effected him from the neck down. Though most of his skin is currently clear, he does have a few small spots that worry me. Those small spots usually mean more is on the way. Usually the summer clears him up quite a bit and by this time in fall he is covered again. We are very lucky this year that things are still good. I am attributing this to Barney's formula. Ben has been on Barney's since the end of August, and though we've missed a day here and there, I really believe that this is what is keeping him well. We shall see....always the pesimist, I'm just waiting to wake up one morning and see him covered again!

We hope that everyone is enjoy the fall weather (it went from high 80's to 50's overnight here) and having a healthy begining of the new school year. We look forward to hearing from everyone.

Hi from KATE

Hey guies I`ve missed you all. School is great so far I`ve gotten good grades. I also got into chorus.

Sorry I'm Late!!!

Hey guys!!! I have been so busy since we got back from Florida. Spent part of one week in Philadelphia for the FHA Conference, then spent part of the next week in DC giving training to FBI and FDIC/OIG Agents in Mortgage Fraud. Last week I had to get as much sewing done as possible for my quilt club.

Did I ever mention I get distracted?

Anyway, I still don't have the pictures developed from Orlando. I get paid next week so I PROMISE to get them developed and post some of Kate. She is at school right now, but I will let her get on and say "hi" when she gets home.

Kate finished up three more badges for Girl Scouts and I already put them on her vest. She and her daddy had a really great time at the Father-Daughter campout the other weekend. She got to take apart owl pellets and find out how many voles the owl ate by looking for bones!!! She made a parachute for a water rocket made out of a 2-liter soda bottle and she made an owl house (it's a LOT bigger than a bird house). We are going to have to take that out to her grandparents house where they have a lot of trees and woods. If we get a owl to live in it we will let everyone know what kind!!!

Kate's brother William is home with a cold - not strep throat, thank heavens. And I am making chicken soup from scratch. Got a lot of rain yesterday from what was left of Ike but it cooled down a lot. Now it feels like fall.

Is everyone in Texas ok? I hope the worst part of the hurricane missed you.

I feel so sorry for Emily. That is really rough with current breakouts and bleeding. Kate does really well with her Enbrel shots. Since we got on those consistently she keeps getting better and better. Now she has only a few scabs on her knees and elbows. They are barely noticable.

For her body, try getting some of the AXE body wash. It has volcanic rock emulsion and soothes Kate when she gets ichy. The Touch and Pheonix scents are pretty nice for girls. I don't know what to tell you about the scalp. I have used Clobex on Kate's before. One or two drops on each open spot. It stings some. But then, her scalp really didn't start getting better until she was on the Enbrel. I know it is tough to go through this, but tell Emily that we have all been there. And Kate and I send her really big hugs!!!!

Gluten-free

Hi, Jake. I just read your post. If Emily was still awake I'd have her write something. We miss all of you guys.

We've been having a tough go of things lately. Emily went back on Cyclosporine a few weeks ago. This time it hasn't been helping at all, in fact the disease is progressing as rapidly as ever. Her scalp is almost always bleeding in one spot or another. We filled a new prescription (thinking maybe the one we were using was ineffective because it's a few months old). This time we got the generic brand. It's horrible. Even though the old brand was "yucky," Emily still took it without any trouble. Today she was in tears before I ever got the medicine ready. She says that this generic one burns her throat on the way down. Our doctor is out of the country right now. We hoped to be able to talk to him about other options.

I talked to his assistant about MTX. She assured me that there is a pill form. Can any of you tell me (if you know) any advantages/disadvantages to shots over pills?

And while I'm posting questions: Christine, you mentioned the gluten-free diet. Was that helpful at all? You also mentioned that Carly was showing signs of psoriatic arthritis. Do you know if the arthritis can cause permanent damage? Emily has been showing signs. I don't know how long I should wait to see if the medication is effective, or if we need to demand a more effective treatment option immediately.

Hello from Jake

I like how Kaitlyn and Carly posted but does anyone else want to post on here? Where is Logan, Emily, Ben, and Katie? Where are you guys? I want to see pictures of my friends.

From Jake

Katelyn and Carly's Story

This blog is a product of the bond we share as mothers of children with Psoriasis. I hope that what we share here will support others dealing with the physical and emotional effects of the disease.

My girls were 7 and 5 when Psoriasis entered our lives. I'm not sure exactly where it all began? I think it was a small red bug bite (or so I thought) on Katelyn's leg after summer camp.

Gradually over the next few months she had more "Spots" and her sister developed them as well. Last fall (2007) we were searching for answers. Nothing really made sense. Why did her sister also have the spots? Was it contagious? Why didn't I have any "spots"? We tried creams, Allergists, Dermatologists and of course our pediatrician. We had several different guesses at what was wrong. People stared, we cried and I struggled with so many different feelings. We had parents questioning our attendance at school and spent months on a strict gluten free diet.

In December it was obvious that Carly was now much worse than Katelyn. The lesions covered her entire body, her ears were covered inside and out and her scalp was covered by THICK lesions. The daily bumps and bruises of childhood led to pain and bleeding. Emotionally this was tough for everyone!

We found a great Dermatologist who diagnosed Strep and explained how Psoriasis is most commonly triggered by Strep. (Stress and Injury are two other triggers) He did a biopsy on Carly's spots and prescribed UV treatment three times a week for three months for both of my children. We also began trying tons of different topical medications, nothing was helping. Both girls were treated for strep on several occasions and in February we thought the UV Treatments were helping. Then suddenly they were worse! Strep again!

When everything else failed, we decided to take things to the next level. Our Dr. called some colleagues and we soon received a call from Children's Hospital of Philadelphia (CHOP), who wanted to see both girls right away.

By the time our appointment arrived, Carly was showing signs of Psoratic Arthritis. The appointment was rather intense and we were given some medication options. These were not nice options. They are serious drugs with serious side effects. We needed to be sure. Sent home with the information needed to make an informed decision. We researched the medications and chose to begin Methotrexate (MTX) Injections right away. Of course right away meant a few weeks .. however long it would take for the physicals and blood work to get a baseline for monitoring.

Our first injection for Carly was in the Pediatricians office. I didn't think I would ever be able to do it alone. She was wiped out after that injection. Just not her self and tired. Our next injection was at home and went rather well. I soon learned about the auto injector you can purchase to insert he needle in and that made it so much easier!

Soon, Carly started loosing her hair and Katelyn was becoming very self-conscious and withdrew. We decided to start Katelyn on MTX for concern for her emotional health and a fear she woudl worsen. Carly was soon fitted for a wig and before we knew it school was out for the summer.

We are now 4 months into our treatments and the girls are finally clear. Since the injections began we have seen few side effects and no complaints of sore joints.

There are so many details I can share about this journey. The thing to remember is that everyone needs to make the decision that is right for them. Finding the right Dr. and facility to treat your child is one of the most important thing you can do. And,as always, rust yourself to do what is right for your child!

Jake and I are going to walk in Dallas!!

I just posted this on my family blog hoping to raise some funds for the NPF. You can track our progress by pressing the link to my personal page on the bottom of this letter. We have never done a walk before but we are very excited to be involved. Have any of you done a walk in the past? We will post pictures of it all when we finish in September. Wish us luck! :)

Dear Blogger buddies,

I know there are many wonderful worthwhile causes that you can choose to support but I am asking you today to support a cause that is very close to my family.

I think most of you know that our son Jacob has psoriasis. He developed the disease when he was six years old and he has spent the last two and half years trying to stay clear. Jacob now is under the care of a wonderful doctor in Dallas who has kept him all cleared up now for three months. He takes serious medications in order to keep his skin and body healthy. Last weekend when Jacob and I were in Orlando for the National Psoriasis Foundation conference we learned about a walk for awareness that will be going on in Dallas on September 20th. Jacob really wanted to participate in the fund raiser/awareness raiser and I did as well. We signed up as a team to walk and now we are asking our friends, family, coworker and any one else who will listen for donations. The foundation does amazing work to better the lives of people with psoriasis. Jacob and I are blessed to be associated with such wonderful caring people. We really want to give back and try and bring more light to this disease.

Psoriasis is a common, chronic, noncontagious skin disease that causes red, scaly patches, which can appear on any part of the body. It can cause the skin to itch, crack and bleed as well as hair to fall out. Psoriasis on the hands or feet can prevent people from doing everyday tasks such as writing or walking. Ten percent to 30 percent of people with psoriasis also develop psoriatic arthritis, which causes pain, stiffness and swelling in and around the joints. The National Psoriasis Foundation is dedicated to improving the quality of life of people who have psoriasis and psoriatic arthritis. Through education and advocacy, the Psoriasis Foundation promotes awareness and understanding, ensures access to treatment, and supports research that will lead to effective management and, ultimately, a cure. According to the National Institutes of Health, as many as 7.5 million Americans have psoriasis (of which approximately 1 million of these patients are children). I am asking you to help me make a difference in the lives of those affected by this disease.

I know money is tight for most families right now but if you felt you had it in your budget to participate in this cause we would greatly appreciate it. We sent out emails inviting many of you to participate but we didn't have every one's email addresses so I thought I would post it here on my blog as well. To make a donation please go to my personal page to find out more about psoriasis or other ways you can help with finding a cure please go to the National Psoriasis Foundation website.

Thank you all so much for your kind words, prayers and support,

The Clement Family

Welcome all!!

Hey everyone we sure do miss you all. It was so wonderful to meet other mothers and kids who are struggling with this same disease. We hope that this blog will keep us all connected and encouraged. Please feel free to post about anything that you would like to share. If you need help with any of the technical stuff I will do my best to talk you through it just email me or give me a call. I added some pictures on the side of the blog from the conference. I only had a few of the group (most of my pictures were of just Jake and me). We would love to see some of the moments you caught on camera so please add them on one of your posts.

What did everyone think of the conference? I thought that everyone did a great job. I know that the conference was not focused specifically for our little ones so some of it was a little above them but all in all I am very pleased that we attended. I think my favorite part was meeting all of you. I know that was Jake's favorite part. Your kids are all so fun and special we hope that we can all get together again sometime. Until that day we will have this blog to stay connected.

Let me stress that this is NOT my blog it is all of our blog so please contribute often. I can't wait to hear from you all.