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
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6 comments:
Hi Sarah & Olivia!
Like all of the families here I can really relate to your story. Both my girls have been through the topicals and the tar, oils, etc for the scalp. Carly had it on the scalp really bad. Recently Katelyn's scalp has been getting bad again as well. Their skin is now clear and they have been on MTX injections since April.
The school packet Nicora mentioned is great. We haven't personally used it yet, because the girls are clear right now. I did review it when they sent it and plan to use it if (or when) there is another flair.
I think having others avoiding your child is one of the worst parts of this. Carly really experianced that pretty bad with her Pre-K class.
Welcome to the group and good luck with everything!
Thank you Christine. When Olivia saw pictures of other children with what she had she got the biggest smile on her face, I was so moved I cried.
All we want is happiness for our children. I am trying to find out about scholarships to the conference this year so we can connect with other families that are living with this.
Thank you for sharing your story with me. We have a dermatology appointment on Monday, and are going to ask about treatments and get tested for strep.
Thanks again : )
Welcome Sarah and Olivia!!
I think the one thing that I have found in our journey with my son Jake and his psoriasis is that every body reacts differently to different treatments. For me the most important thing was finding a dermatologist that I trusted and knew what he was doing. We found a wonderful doctor that is unfortunantly 6 hours away from our house but it was so important to me to have him treat Jake that we make the trip fairly frequently. It looks like Jake's most recent flair has turned the corner of remission which is a huge relief he has been pretty bad for about 3 months.
Good luck with the school packet I found it invaluable. The kids in Jake's class responded so well to it and Jake seemed to beam with pride having me and him both taking the role as the "teacher". He love it!! Let us know how it goes, and feel free to email me at home if you need anyone to talk to or any advise at all.
Oh thank you so much. I will definitely take you up on that. I know that Olivia will also have a wonderful time teaching with me. I am excited to do it, and very grateful that the resource is there.
We see the dermatologist for the second time tomorrow, and i feel that I would like to see someone more frequently, but we can only get in once a month. I am going to talk to her about that tomorrow when we see her.
I will let you know how it goes : )
Thanks for sharing your story with me. It helps so much.
Hi Sarah,
I was Just wondering how your appointment went? I hope all is well!
Hello,
I am having mixed feelings about the doctor that we are working with. She is OK, but I don't feel that she takes me to seriously. I told her what we were doing with diet and vitamins, and she told us that the vitamins were unnecessary, but the fish oils were OK. I just want a second opinion I guess. I know of people that are taking vit. D supplements and it really helps them.
We also had Olivia tested for strep and it came up negative. So that is not an issue I guess. Olivia is breaking out again on her body and that concerns me. She seemed to be doing better when she was taking the vitamins, but the doctor told me not to give them to her, I don't know what to do really.
They also told me about the light treatments but said that they would put her at an increased risk for skin cancer. I am not comfortable with that.
I am going to continue to look for doctors and go from there. Maybe I will find someone that fits us better.
Thanks for all the support: )
Sarah
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