Helping children with p.

[Holverson]

My 10 year old daughter has had p. for a couple of years now. However, up until a few months ago, it was not bad at all. When we would see a few spots we would give her coal tar baths a few nights a week and they would go away. In October she broke out all over. We finally took her to a dermagologist, and we started uvb treatments 5 days a week and then down to 3 days and it was looking good until just after new years she had another outbreak that was worse than the first. Kids at school stare and ask questions and she cries a lot at night because of the itching. We are back up to 5 days a week on uvb treatments. We have Dovonex, Locoid, Elidel creams. We have tried coal tar baths again, which seem to do nothing now. The dermatologist also gave us some oral medication that is supposed to help, but I can't remember the name. It is supposed to help with the itching and to help her relax. She is extremely frustrated right now, and I try to reassure her, but it has made life very difficult for her. I am trying to learn as much as I can, and have read some about the "triggers" that cause outbreaks. Although I have heard from a few sources that stress can cause outbreaks, my dermatologist says that it cannot. Has anyone out there been able to find out what "triggers" their loved ones p. and how do you help the younger children deal with it?

Hopefully, there's some help out there somewhere.

Thanks
Chris

[slg]

Chris,
You might want to talk to your daughter's teacher about making a presentation to the class. The kids are scared by it and might feel that they can catch it from her. The most important thing you can do is explain to your daughter what she has so that she can explain it to others when they ask. The other important thing to do is to make sure that she realizes that it does not effect her self-worth and self-esteem. I have to rememember those things too and I am 22.
As far as triggers go I have heard that infections can cause a flare up or break out. Despite what your derm said, stress is a trigger as I can attest to at finals time. Another trigger is pure genetics.
I hope that this helps.
SHANA

[Marielle]

Chris
Hello my name is Marielle and I have a 6 year old daughter with P really bad. She has only had it for 3 months and is 85% covered. She is going through the UVB treatments 3 times a week and is improving slowly. A few things that Jessie did was she took a few of the posters into school and told her class about P for show and tell. After that she has not covered it up. The kids ask lots of questions but Jessie is really good at answering there questions. She has had a few problems with it but most of the time she says "Oh that, it is just my P". If you want your daughter to feel better about herself try to find another child in your area or have her check out the kids message board and talk to other kids. Jessie finally met another kid with P over Christmas and feels tons better about it because she now knows that she is not the only kid with P.
About the triggers Jessie got a strep infection that made hers show up. I have read that it is also stress related, which could also be with Jessie because we had another child in June and Jessie now has to share us. She said that it did not bother her but I wonder.
Another thing I keep forgetting is that I have to be strong for her. Everytime I put on her meds I just want to cry. I don't cry in front of her but it is really hard to see this beautiful 6 year old who just 3 months ago was fine to this beautiful 6 year old with P that has taken over her body and some of her face. I just have to say that God has a place for Jessie and he gave her this to help her find her place.
I hope this helps you and your daughter, this site sure has helped me grow. I come here everyday to be with our "P family" and listen and also vent.
Thanks and if you need anything just reply
M

[GERRYW]

Hi Chris and friends!

My 7 year old daughter was diagnosed with P in November. I stood in my derms office and cried. Why? Because I\'ve been battling the ups and down of P since I was 14 (nearly 25 years). I keep hoping that hers may go away someday even though mine never has. It\'s a \"funny\" disease. What treatment works one month doesn\'t work the next. Or you\'ll get P in a spot you\'ve never had it before and yet somewhere that you always get P is suddenly clear. I know certain things trigger my P and make it worse. Stress is certainly a factor and yet I\'ve had derms give me a sideways glance when I\'ve said that to them. I wonder what caused my daughter\'s P to appear this year. I sometimes think it\'s the \"stress\" of the teacher she has this year. I know she would say she\'s not stressed at school but then she\'s only a 2nd grader and I\'m sure she doesn\'t really know what stress means. After having gone through it, I myself wonder how to help my child deal with this. I think it\'s important to keep kids involved in whatever activity it is that they love...that will certainly help their self esteem. And knowing they are not the only one with this disease helps. Sometimes I think my daughter thinks everyone\'s Mom has P. I just wish the public understood how devastating and serious this disease can be...not just physically but emotionally. (I know the NPF is always working to educate the public.) I know our children are young and we need to be strong for them, but if this disease isn\'t cured by the time they\'re older, I think it\'s okay to have a good cry with them. I remember my mom having a good cry with me when I was a young adult and somehow that memory gives me strength today...it\'s okay to let it get you down as long as you pick yourself back up. Good Luck to you and your precious little children.

Gerry

[Holverson]

Gerry, Marielle, and Shana,

Thank you very much for the advice. Giving the class a presentation is a great idea. I think I will call her teacher this afternoon and talk to her. Also, I am very glad to hear that you believe stress is a factor. Kandra had a brain tumor in 1999 (She gets all the great stuff). She had 2 brain surgeries within 2 months and she still has to have an MRI done every year. I KNOW that she stresses over this, and her Psoriasis broke out just before her last MRI. I kept telling myself that is what set it off, but when I tallked to the derm about it, he said NO. I guess I'm learning that sometimes moms are smarter than doctors and doctors are not ALWAYS right. I have just recently shown Kandra the children's message board and she did write some things on there, although noone has replied yet. She is very anxious to get to know someone else with it. She is an amazing child who has already been through some tremendous trials in her life, and I'm sure that she will probably fair better from all this than me. I also do know that God has a reason for what he does, and that this is a trial she and the rest of her family, must face.

Thank you all so much for replying and making me feel as though I'm not alone in this.

Chris

[NPFwebmaster]

Note from the Psoriasis Foundation Webmaster:

Please also be aware that you can request a "School Action Packet" from the Foundation to use if you decide to make a presentation at your child's school. The packet includes fun things like posters and stickers for you to give the other children. It's a great tool for teaching children about psoriasis!

If you'd like the "School Action Packet" please call the Foundation at (800) 723-9166 and request one today!

[iansmommy]

Hi. My son Ian, age 1, has psoriasis. Some of his triggers are heat, dry air, soap (we have to bath him with "soap-free" soaps like Cetaphyl or Aveeno) and dairy products. We recently had him allergy tested because we thought he had some food allergies and wanted to make sure. He does have allergies to dairy and peanuts along with some environmental allergies.

Carrie

[Carla]

Dear Chris,

I had psoriasis when I was 10 also. I agree that a presentation to the class will help a great deal. My mum phoned the school after I was getting bullied and the teacher explained to the class what psoriasis was. After that the other children took less notice of it.

Best Wishes,

Carla

[Holverson]

I did call Kandra's teacher on Friday. She was VERY helpful, and in fact, I found that her little 2 year old has something very similar that she deals with. We had a great conversation and she said she will talk with Kandra this week and we will schedule a time for her to do a presentation about Psoriasis. Thanks all you mom's for all your wonderful advice. This is a great outlet for me.

Chris