Mom Introduced to Psoriasis

[Marielle]

Hello everyone. (I copied this from my posting on the Kids site) My name is Marielle and my daughter Jessica, who is 6, was just diagnoised with "P". She has been diagnoised for just a month now. She began having this patch of skin on her face turn red and go away. This went on for about 5 months. Then the patch did not go away. We took her to her pediatrician and they took samples and could not figure out what it was. Then a couple of weeks later she developed a thick patch over her belly button. The pediatrician was still thrown. She said that she did not think that the two were related. So we went and saw another doctor. They said the same. After 4 different doctors, she started to get a few spots on her neck and then all hell broke loose. The "rash" was everywhere. Her neck was covered and the patches were starting to crack and bleed. Our pediatrician set up an appointment with a Dermatologist, but the soonest that they could get her in was Jan. 7th 2003. I finally called the Dermatologist and pleaded and they got us in. She had the worst case (in a child) that this dermatologist has ever seen. I am so glad that he decided to see her now and not 2 months from now. Could you imagine what she would have been like. Her treatments have been doing really good. She now has a belly button again. Her scalp is getting really bad, so I am going to try a few of the shampoos that were mentioned in this forum. She does have oil (I can't remember what it is called) that the doctor prescribed but that is not helping her from itching. She is losing her hair in the bigger spots. Jessie has now just started her UV treatments. She is going 3 times a week. The derm said that she now has about 80% coverage. She is in real good spirits though. She has decided to tell her class for show and tell. So I printed off a few of the posters and she went to school and told everyone that she has P and what it is and that they can not get it. What a stong one. We have not figured out where this has come from. It is not on either side of the family. I read so much I don't know what is true and what is not about P being hereditary. So far this site has been the best thing for me. The hardest part for Jessie is that she hates putting on her meds. She even pleaded the other night . "Mom, I am going to have this the rest of my life, can't we go one night without my cream." Well I am glad that you all are out there. It is really hard right now for me to stay stronge for her. But with your help I have been very positive about everything. Thank You
M

P.S. Jessie would love to hear from any little people out there. She is so excited to know that there are other 6 year olds with P.

[RonnieNSN]

Hello Marielle, I just replied to you on the kids page but it will take about 24 hours for it to show up there and here it's instant. Basically I was wondering what part of Michigan you live in because we're going there for Christmas this year. We will be in Greenville Michigan which I think is an hour east of Grand Rapids. If you live near there maybe the girls could meet. You can reply here or if you'd like you can e-mail me at RonnieNSN@cfl.rr.com.
Take care and I hope to hear from you soon.
Ronnie

[Marielle]

Ronnie
What a small world. We live 10 minutes South of Grand Rapids. I used to work in Greenville. We would love to visit with you and Mickey. I will e-mail you at your address and give you my information to see if we could get together.
M

[iansmommy]

Marielle,
Here is the short from of my son's story.
(some copied from this site)

I have an odd case. My infant son, Ian, suffers, yes suffers, from psoriasis. He was diagnosed when he was about 4 months old. He is now 11 months. He itches all the time. We do have a prescription antihistamine that really helps with the itching called Atarax (sp?). Our pediatrition's grown son has psoriasis and this is what they used on him as a small child. Ian is on a drop for his head, prescription cortisone for his face and another cream for the rest of him. He also suffers from food allergies. Namely wheat, milk and soy. The soy aand wheat tend to make it worse. The weather also affects his P. Heat and very dry conditions make him break out. The sun is good though as is a swimming pool.

I do believe in the heredity thing as I have a very mild case of eczema and my mother thinks that her dad also suffered from it.

Carrie

[Marielle]

Thank You Carrie for telling me Ian's story. How is he doing? I also have a 6 month old baby (who so far does not have P). My dad wants us to get a blood test done to see if she has the gene also but I don't know if 1. It can be done and 2. If I want to know. We found someone at Church (a grown man) who also has P so Jessie does not feel too much as a outsider. He is now teaching her Sunday School Classes, so she talks to him about it. Jessie does not seem to be itching all that much. Which I am glad for. Ian suffers in the heat? I wonder what Michigan summers are going to do to her. So far the Michgan winters are awful on her. She is now covered 80%. Well I better get going, Jessie is waiting for me to put on her cream.
Thanks Again
M

[PJ Leary]

Hi Sweetie,

Your child asked about taking a break from treatment from time to time.

It has been my life experience that if the scaling is under control, and I use a good moisturiser/topical de-scaler in between, I can go a day without treatment and get a break. I bet she can too.

If I try to go longer, it is not a good thing. Now, I am usually about 75%, so her situation may well be different if her % is less.

What I can suggest is using moisturisers every time things get itchy during the day. That will mean having them available every where. And telling/helping to use them well on every body part that needs it.

Hope that helps.

Regards,
PJ Leary

[Marielle]

PJ
Could you suggest a moisturiser to try on her? Everything I try to put on she say that it stings. I think I might be applying the wrong kind. Thank you for your response.
M

[Shana Hansen]

Hi Marielle,
Sorry to hear that your daughter is having a tough time. My daughter Lillian is now 27mo and came out of the delivery room with psor on her face and arm, at 10wks she was diagnosed with psor by biopsies. We have tried all kinds of treatments and her skin is looking pretty good right now. Like PJ said moisterisers seem to help Lillian's skin as much as anything. The last couple of month's I have been using emu iol lotion which does not have any fragrance (she allergic to that) and is pretty much natural and it is helping a lot. But of course as you will no doubt find out, something will work and then all of a sudden it doesn't anymore. So I have learned to keep all the tubes of meds you will accumulate because at some time they just might work even if they don't now. My hat goes off to Jessie for doing the show and tell at her school. Hope she gets to feeling better soon.

Take care,
Shana

[PJ Leary]

Hi Marielle,

A really good stand by for serious moisture is Eucerin in the paste form, sold by the jar. It is always most economical to buy the largest size. Apply it from the trunk outward on the arms, downward on the buttocks and legs to the ankles. If necessary, you can use it occlusively on the feet ( generously applied covered by a sock overnight ). Aquaphor is as good.

Aveeno sells an OTC colliodal oatmeal bath that is soothing and promotes shedding of scale. It is important to pat down after the soak, and apply moisturizer while the skin is still damp. I find a re-application 45 minutes later very beneficial.

MG 217 is an OTC tar/salycilic acid ointment that will de-scale in a few hours after application. It is also available in non-tar, and in lotions and shampoos. I find the ointment with tar the best for de-scaling. Derma-rest is another similar product, but only available in a lotion, which is not as effective.

Personally, I rotate among a few brands, that way they remain fairly effective. I also hate stinging. I can suggest fragrance free Lubriderm, Curel, and Alpha-Keri as gentle yet effective brands.

If you have a good pharmacist, print this out and take it to him/her. Ask them to order your choice of these products in the largest size available.

Once the skin become clear, Lac-Hydrin is an excellent prescription moisturizer. However...CAUTION... it stings REALLY badly on any open lesion. I suggest the cream rather than the lotion.

Let me know if I can help any further.

Regards,
PJ Leary

[Marielle]

Shana and PJ
Thank you for the recomendations on moisturizers. I personally never had to use them so I am totally lost when I went to the store to pick up ones for Jessie. She really hates the stinging. Shana I have been reading a lot about Lillian. What a trooper. I also have a 6 month old little girl named Jillian. I could not imagine her having to go through what Jessie goes through everyday. Jessie just finished her second day on the lights. She goes 3 times a week. She thinks that it is really fun. My poor husband has to get her out of school and take her to the other side of town to do 19 seconds of light. But we will do anything to help her. Thank You again PJ and Shana for your advise and support. I will keep in touch.
M

[iansmommy]

Marielle, The heat does a number on his skin as does the dry winter air. I have been maedicating him about 3 times a day just to keep his P in check. Right now he is doing pretty good. His face is trying to break out as are his legs. I am hoping to get it stopped before it gets out of hand. :)

Carrie

[Marielle]

Carrie
Where are you located? We live in Michigan, which has terrible winters and very humid summers. So Jessie is not going to be comfortable ever. Between the cold and the heat. eh! Jessie is doing good right now with her light sessions. She already is getting a tan and she has only gone 3 times. I have been putting on moisturizers every other day and she seems to like that. (Thanks PJ) Have you tried that on Ian? I do her meds on her scalp and face still though. Her poor little face is now covered. Her eyes are the worst. I think that is because she has to cover them for the lights. Well back to work. I hope all is well and will talk again soon.
M

[RachelB]

Hi Marielle and everyone,

My daughter, Rachel is now 9 and has had psoriasis since she was a baby. We also live in MI and winters are hard. We're closer to the east side of the state, in Ann Arbor.

I can certainly relate to the cream issue. It takes so long each morning and each evening, although as things get under control there are less spots and it is easier. I honesetly don't think all the creams Rachel uses do much to help her, although our dermatologist says we need to continue. At UofMichigan they recommend a moisturizer they make up at the hospital, called Water Washable Base. It's similar to the Eucerin cream, but not as greasy. They also perscribed an oil for application before shampooing (we have perscription shampoo) and that really helps. (I'm at work right now, but will let you know the name when I get home).

Keep up with the light treatments. That works wonderfully for Rachel. It takes a couple of months of 3X/week for major improvment, but for the last few years it is the only thing that has kept it under control for us. It takes a lot of time, but it is important to keep it up for the 3 treatments each week. Less than that only maintains things but does not improve.

Also congrats on the presentation to the school. It has taken Rachel 9 years before she was willing to have me discuss it with the class. She feels terribly embarassed about it, although is feeling better now that all the kids know and understand.

Good luck

[Marielle]

Thank You Rachel's Mom for your reply. It is good to hear from someone else from Michigan. I was really wondering how the winter was going to be. Since this started when it was cold out I did not know if it was not getting better because of the cold. The "Lights" are seeming to work. At least it is not spreading anymore. So we are going to continue that. Does anyone know how long it is before you can use a steriod cream again? The Cream that worked the best the doctor took her off of after 2 weeks. Now it has been 2 weeks since then and I was wondering if I could start using that again. I was going to ask her doctor but I forgot.
Well back to work.
Talk to everyone soon.
M

[iansmommy]

Marielle,
I am in Oklahoma. We get very, well relatively, warm summers. We usually hit 100 a dozen times or so. Our winters get pretty cold, though I know not as cold as those in Michigan, but the air gets very dry. For Ian I, or my husband, do his meds morning and night. He is on 3 different meds. Fluocinonide drops for his scalp, a prescription cortizone(Lomid I think is the name) for his face and a cream for his body -- I can't find the name of it right now and he is asleep in his room where the "tub" is. For his moisturizer we use Cetaphyl cream. I also bath him with Cetaphyl soap and wash his hair with Neutragina T/Gel. Right now he looks pretty good. Just a few spots on his face and legs. I have tried to keep him in as much as possible but I know with a school age child you can't do that. Also, when he is really broken out, I try to keep him in long sleeves and pants. 1. it cuts down on the stares and 2. Ian's spots tend to drain so this keeps stuff from sticking to them (if they are really bad I will cover with gauze before dressing him).

Hope that helps.
Carrie

Carrie

[Marielle]

Carrie
Hello
I am going to start trying the T-Gel shampoo on Jessie. We also are starting to soak her in Aveeno Oatmeal baths. (See PJ's letter above). I hope all this is going to work. She is getting to hate her meds. She pleads at night not to get her meds on. She even wanted to give up her snack not to have her meds. What do you mean Ian's spots drain? Jessie's are so dry there is nothing there to drain. Is it a different type of P? Jessie has Inverse. On the kids site under Moms there is a women who thinks that her daughter might have P and said that her daughter has "blisters". Jessie's do not look like blisters at all. So you might want to respond to this ladies cry for help also. Jessie is wearing all her normal clothes again. She has decided why cover it up. So she is living with it. It is really bad though and she does get the stares. I had her trying on clothes the other day and the dress room attendant kept looking at her and was about to say something and I said "No one can catch it"! I felt so bad for Jessie. But we are not going to let people make her hide it. We are going to tell them like it is. Thanks for everything.
M

[iansmommy]

Ian has guttate, I believe. We were never given a "type" but in my reading that is the one that fits. His spots get very sticky and leak this clear stuff. It is really gross. He does not get blisters thankfully. Let me know if the Aveeno bath works.

Carrie

[Marielle]

Carrie
Sorry this took so long to send. I have been really busy with work, the holidays, and Jessie being in UV sessions 3 times a week it is kinda hectic around here. Jessie has Inverse and I think maybe guttate, but she does not have them leak. I guess I should be thankful for that one. Hers are really dry. I even call them red spots with "white caps". I did not try the Aveeno baths yet. The cost is a bit much right now. With meds and Christmas, but as soon as I try it I will let you know. I did buy a few moisturizer that PJ recommended and they are working really well. Thanks again PJ...I am using Eucrin paste and an Aveeno Oatmeal moisturizer. Jessie now calls herself a dalmation because she has spots. I guess this is good because where her P was it now is white spots. She is tan everywhere else. She is still covered but we are seeing an improvement with the UV sessions. Well back to work.
Talk to you later.
M

[iansmommy]

M,
Glad to hear that the moisterizers are working I will have to try them with Ian. He has broken out again. Started just before Christmas and I am having a hard time gettin git back under control. I am going to give myself another week to work on it and if I can't tame it then I guess we will be seeing the doctor. Ian's has some very dry patches that have white tops. They look almost like they are scabbed over.
Glad you had a good Christmas.

Carrie

[Marielle]

Hey Carrie
How are things going with "taming" Ian's break outs? We are finally seeing some improvement with Jessie. She is now about 60% covered and her hair is finally getting better. She is going into her third week of UVB treatments and I think that is working as well. I finally got the Aveeno bath soaks and they are working wonders. She is no longer itching and her skin actually feels really smooth. I am going to give her a bath soak once every week. We had a very nice visit with Mikey and Ronnie last week. It was so much fun to actually meet another child and parents that have a P child. It was like we knew each other for years. This site sure brings friendships out there. Jessie was very excited. I think that was better than Christmas. Well I am at my in-laws and we are about ready to go home. Talk to you later. Have a wonderful new year.
M

[iansmommy]

M,
Happy New Year! I am so glad that Jessie is getting better. Ian has had a good week as well. His seasonal allergies have been acting up so I have been giving him benadryl. The great thing is is that it is also helping his itch so he is not scratching as much and he is clearing up. Who knows how long the clearing will last but I am going to enjoy it while it lasts. :)

Carrie

[Marielle]

Hey Carrie
How are you? How is Ian? Has he had his birthday yet? I bet turning one is so much fun. I have a 7 month old besides Jessie (who is 6). Jessie took a turn for the worse again. I think it is because of not wanting meds on. She hates them. The derm ended up "turning up the heat" on her UVB treatments and we are starting to see some difference. She has now got it on her feet. The two places that she did not have it was her feet and her hands. She still is a trooper. Well I must get going. Tell Ian Happy Birthday.
M

[iansmommy]

Marielle, Ian turned one on January 5th. I can't believe it! My baby is getting big. We had a little party, just some family and a few close friends. It was nice.
His P is doing alright. We ran out of his Locoid (for his face) and had to wait a few days to get the refill (had to wait for payday). During the wait he started breaking out again but we are now in the process of getting him cleared up. We have allergy testing set for tomorrow (1/10). Ian also has some food allergies which cause him to break out. We have to see if we are missing anything because he is always a little broken out with the psoriasis.
I am sorry to hear about Jessie. This has to be alot for a 6 yr old to handle. Ian's big sister is 6 and I can just imagine her frustration if she had to deal with it. I hope you can get Jessie's P back under some sort of control. Good Luck and hang in there.

Carrie

[bevku]

Mom, you may want to try the least expensive path I've ever encountered: magnesium sulfate, otherwise known as Epsom salts. Mix one cup of salts with a quart of filtered water. Once the salt is in solution, spray a small amount into the hair and on other areas of the body. I've had P for over 30 years and have spent a small fortune on drugs that don't do as well. Keep in mind, however, that what works on one P patient may not work on another and what works today may not work tomorrow. It's such a finiky disorder.

I hope your daughter can build a strong self-image so that she'll be able to handle the invariable teasing from others.


Bev Kurtin, Hurst TX

[Marielle]

Thank You for the respose Bev. I will try the salts. I will try anything right now. She is going though her 5th week of UVB sessions and is getting some improvement. I have been trying a lot of different things, from vitamins to bath soaks. Her upper torso is looking much better but from her belly down she is really bad. She does not seem to mind it though. Jessie has a very good personality to have P. I thank God for that every day. She told me that she doesn't mind having P. I am praying that she keeps this attitude. Well I have to go. Talk to everyone later.
M

[janetmknox]

Marielle, Hi my name is Janet. Sam is my daughter. I was referred to you by Mike. My daughter has her own at home light box as you say UVB therapy. We havent used it this year yet and we are going to try to stay that way for a while since summer is almost here. We only use it in the winter. I wonder if these Dr. had to put the meds on every day twice daily if they would complain. Sam hates it. I have had my share of Dr. we have a pretty good one now though. I've researched the p alot too and it is confusing but I think I have a handle on it now. I wish I could say the same for it on Sam.

[MikeK]

Hi Everyone!

Marielle: Janet and Sam introduced themselves to us on the "youth and teen" board the other night. Their story is very similar to your's and Jessie's and I suggested that she reach out to you.

Janet: Welcome! You've come to the right place. Marielle and the other "p moms" use this board to provide a wonderful on-line support group for each other.

Mike

[Marielle]

Janet
Hello how are you doing? I posted to your other post before coming here. So tell me more about Sam? Where are you from? We are from Michigan where the winters are brutal. Not just for the snow and cold but for Jessie's P. I take it that you read Jessie's story. She is doing good right now. Just a few spots here and there, but her eyelids are getting pretty bad. She fights me every step of the way to put on meds, so her eyelids have been negleted and now she is having problems keeping them open. Kids!!! How did you get a home UVB unit? We were going to try but my husband did not have a problem running her to the Derms office three times a week. He did that for 5 months. I couldn't have done that. I would like to hear about Sam? Plus, you need to get it out and vent. That is why we are here. I want to hear all about the ups and downs of Sam's P. Well I better get back to the grindstone. Please keep in touch. That is why I am here. We are all in this p family together and we need all the help and support we can get. Just remember it will get better. I used to cry everytime I put on Jessie's meds and now I just take a deep breath and look at the beautiful daughter I have with P.
Talk to you soon
M

PS
Mike thank you for the referal. I feel like we all need each other and I am glad that I can be a support to someone like you were to us. Thanks

[PJ Leary]

That is my experience with salts. Stick with the Aveeno. You should also try the Balentar, it is wonderfully soothing. It will stain, so use old linens and pj's. Launder all tar stained items in cold/cold seperately from all other laundry.

My sweet hubby says I must leave the pc for now, my legs are too swollen.

Regards,

PJ Leary

[Kringle]

Hi Marielle and Jessie,

I'm new here and as I read through your post I was so inspired. (Mike brought you to my attention because I had questions about light therapy - thanks Mike!)

My daughter Leah is 9 and was diagnosed (well - at first misdiagnosed!) two years ago. She has a fairly severe case - although it doesn't sound like its reached the heights that Jessie did (not yet at least ... as I knock on every block of wood in the house!).

However, in the past 4 months its escalated and is now on her scalp, all over her arms, legs, pelvic area, and starting on her back and belly, etc etc etc. The escalation may be because of our climate - I live in Ottawa Canada and the winter this year was especially rough. All we've been prescribed thus far are shampoos, cremes and lotions and they are sooooo ineffective. That's why I'm inspired by your story:

Inspiration 1. Jessie had the courage to stand up in front of her class and discuss this disease - what a courageous wonder kid she is! Leah's pretty brave in handling this too, but tends to try to ignore it and when asked, says its dry skin. But now with warm weather here its time for the long shirts and pants to go - I know she'll face more questions and I hope it doesn't bring her down. Recenly, I've sensed a mood shift - but when I ask she won't talk about it and I leave it alone out of concern my harping might make her feel worse. So I hug her and love her and just say "everybody has something and unfortunately this is your something and you know what - it sucks". But I know I make mistakes - the other day she had on a t-shirt for a brownie thing and I gave her a "hoody" jacket she likes to cover her arms because I wanted to protect her from kids asking her too many difficult questions, or staring, or being jerks. Now - of course that was the wrong message. I should of let her wear the darn t and not covered her up. I didn't say it was the p - but I think she knew.

I'm so concerned that I'm not giving her the right advice - or that Im not giving her the coping skills she needs. Its tough enough being a pre-pubescent girl, let alone without these dam lesions all over her body. Don't you wish you could just wave a wand and take the darn thing over for them so they didn't have to suffer with it? I'm praying my other two won't develop it (and my third - whose due in July), but like you I'm concerned that its genetic - even though I can't locate anyone on either side of the family who has it!

Inspiration 2. that Jessie's P seems to be improving!!! We have a derm appointment in three weeks and I will ask about / insist on the light therapy option. I had heard of it but wasn't sure that kids "qualified". Now that I know they do, I'll put more pressure on the derm to refer us.

Anyways - thats all for now. But, just thank you soooo much for sharing your story. This is my first day on this message board and its a godsend (I've spent hours browsing and 'm supposed to be working!! haha) - But I've also spent too many months searching in vein for this sort of support and information. Thank god I've found you!

Please forgive this looooong message - i've waited too long to talk about this with people who I know understand.

Leah's mom - Chris

[Marielle]

Hey Chris
I already replied to your other post but thought I would put in a few more words. I usually write to this board from work also. Today I am at home and just got back from a wonderful day in the park. The NPF has a wonderful packet for the kids to take to school to introduce the class to P. I am ordering it for her next year, we are going in on the first week of school and educating all her new classmates about P. It has posters, stickers and other stuff. That is going to help the girls tons. You are a mother and will never give the wrong advice. We have a natural instinct to hide it. I just think the more secure Jessie is with having it the better off she is going to be when she does get the questions. I am very terrified that my other daughter will get it. She will be turning 1 on June 5th and everytime she gets a rash or she has cradle cap really bad...I think oh no!!!! But I know after what we went through with Jessie that I can handle it with two. I try and think postive about her getting it now. Most kids get in when they are in there teens. I am glad that Jessie is going to grow up with it instead of having it sprung on her while she was a teenager. That has to be hard. Let Leah know that there are others out there with this. Jessie thought she was alone and then got to meet Mikey who has P also. It made a world of difference. Where is Ottawa Canada at? I will try and look it up. Why I ask is we go camping in the UP in Michigan which borders Canada. Well I better get going. I hope to talk to you soon.
M

[barkshull]

Marielle, I was just curious, when you take Jessie for the UVB treatments, do you have to pay every time you go? We have a 20.00 copay, and I was wondering if they charge every time you go, or for a lump sum of visits?

[Marielle]

Hello and welcome
I usually write on this site from work and we have been so busy that I have not had time to read. There was no co-pay for Jessie UVB. It was kinda a non-doctor visit. Our insurance ended up paying 100% for 42 treatments. When we saw the doctor we had to pay the co-pay but not when she was just going into treatments. Any other questions feel free to ask.
M

[itzlisah]

hi marielle my son andrew is going on 8 he has had p for almost 2 yrs now its only on his head when it does break out it gets real bad last year it was w/scabs and dry skin around it and it got infected. I was told in the chat room to talk to you seems you well known in here thats great to hear. I was wondering do u think food or stress have anything to do w/the p since my son seems to only get in the winter months, we were told our 3 yr son has it too on his back, stomach, legs etc, havent seen it since the late winter early spring is this common too?????? have any suggestions, thanks for listening to my little story and thank you for any advice we live in mechanicsville, maryland lisa

[Marielle]

Hello Lisa and welcome
Mike did tell me to find you. First of all how are you doing? I know how hard it is and how sometimes you just want to scream. It looks like you have read my Jessie's story. If you have not....Jessie is 7 and was diagnosed in November of 2002 with P on 95% of her body. I always tell people it was easier to say where she did not have it then where she did. Her scalp was bad. We used Derma-Smoothe and Luxiq foam to clear up that and maintain hardly any P on her scalp with Paul Mitchell Tea Tree and Neutragena T-Gel. Right now we are also using the Derma-Smoothe because she has a spot that showed up about two weeks ago. Since Jessie was diagnosed in the winter we don't know what is going to happen to her this winter. The insurance company is on "stand by" to get a home UVB unit if we need it. That is what made Jessie better. She went through 5 months of UVB 3x a week.
Food does not seem to be a factor with Jessie. She will eat anything. Stress???? I hear it can be a trigger, but I really don't know how much Jessie has. She seems to be this wonderful bubbly little girl. STREP, on the other hand has been a big part of Jessie P. She is now on her 6th strep infection since she has had P. I think her derm is about ready to take out her tonsils to see if that is going to help. Jessie shows no signs of strep and the derm even said that her first outbreak might have been because she probably had strep for about 5 months. So you also have a 3 year old son with P? I am feeling the same way about my 16 month old daughter. She has these spots but the derm said that it is Eszema and that we need not be worried that it is also P. Is there anyone else in your family with P? Jessie seems to be the only one in our family so far. Maryland....I bet it is beautiful there. I also love going there. I lived in Deleware for a summer. It was awesome. I am from the Grand Rapids Michigan area. Jessie is really looking for someone she can talk to near us. I do come here everyday so if you need anything just find me or PM me. If you need anything I will be here for you. I know what it is like to be out there with tons of questions, tons of venting to do, and tons of crying to do. This is our family and we have to be here for each other.
I hope that I answered everything that you needed.
I will talk to you soon.
M

[itzlisah]

thank you it was nice to hear from you. andrew has been home 2 days now taking him to doc. today to check for strep cause his older sister had it about 1 1/2wks ago how wonderful and i do daycare lol, what is the uvb light, how does it work, etc. what insurance companys cover it if you know by chance cause ill check into it when i can get appt. w/the derm. for andrew dotn know if should go now w/no p outbreak yet or wait til it happens. any advice on that one. It is pretty here in its own way im originally from new hampshire ready to move back home well got to go to the docs. now for 2 of my kids thanks again look forward to hearing from you again and good luck w/your children on p. lisa

[itzlisah]

forgot to tell you that andrew's dad, grandpa and aunt all have p his aunt has it the worst on elbows knees and a little bit on head his dad only has litttle spots on head, his 1st outbreak was between the legs hasnt had it there since just on the head the red spots w/little scabs. nobody on my side of the family has it that we know of thanks again. lisa

[Marielle]

Lisa
So how did his Drs. appointment go? UVB is a narrow band light booth that helps P by exposing the child to UVB rayes. Jessie was 95% covered, the only part of her that was not was her palms, bottom of feet, tops of hands and a few spots on her face. We tried topicals for a month with no change so the derm asked us to try UVB. Our insurance company would only pay for 12 visits at first but our derm fought it and we ended up with them paying for 42 sessions. She went 3x a week for 5 months and we saw a difference within 3 weeks. Jessie did have a secondary shot of light just for her scalp. So maybe that is what your derm can do. Unless Andrew has it other places. I hope I have helped. Talk to you soon.
M

[MikeK]

Hi Lisa,

Welcome to the Board! :cool: I replied to your post in the Calling all Newbies Thread, but I thought that I'd reply to you here too. I'm sorry to hear that Andrew is going through such a rough time. :( I'm not a parent, but I was diagnosed with psoriasis way back in 1964 :eek: (I was 7 -- I'll be 47 in December), so I have a pretty good idea what Andrew is going through. You've come to the right place. A lot of nice and helpful people post here. :) It's great to finally be able to exchange information, ask questions, vent, or even share a couple of laughs with people who truly understand.

As I understand it, Andrew primarily suffers from scalp p. Marielle's suggestions are right on the money. I agree with them all. Here'a some additional information, including some links that you might find helpful. Marielle mentioned Derma-Smooth/FS. Derma-Smooth is an excellent choice for people who suffer from scalp psoriasis. I highly recommend it even though it's VERY messy to use. (I strongly suggest that you cover Andrew's pillow with an old towel.) It's peanut oil based and CAN'T be used by people who have a peanut allergy. Here's a link for some additional information: http://www.hillderm.com/questions/questions.htm. Some people find it helpful to alternate use of Derma-Smooth/FS with a wonderful product called Luxiq foam. Once the p is under control you can use the Luxiq by itself. Here's a link for some additional information: www.luxiq.com. Marielle's shampoo recommendations are also excellent choices. Since Andrew's scalp p sounds like it's pretty bad, you also might want to try a prescription shampoo called Capex. Here's a link: www.capexshampoo.com.

Marielle mentioned strep. She spreaks from the voice of experience. Here's a link to a very informative thread on the subject: http://www.psoriasis.org/forum/showthread.php?threadid=3074&highlight=presentation+strep.

You asked about stress. I can tell you from personal experience that P and Stress do NOT go well together. My psoriasis used to get worse during exam time when I was in college. I have a very stressful job (been doing it for the last 22 years) and there are certain times of the year when it is more stressful then others. My p gets worse during those times too. It also got bad when my grandfather died in 1973 (we were very close) and it gets bad whenever my 83 year old cardiac patient father winds up in the hospital.

You asked if p gets worse during certain times of the year. Yep. Mine always gets bad in the winter. I have it on my hands and last winter was very bad here in New Jersey. By the time that Spring finally got here, my hands were cracked, bleeding and very, very painful. :( It became very difficult to shake hands or use a computer. They got better once summer got here and that's despite the fact that our summer was cold and rainy this year. That happens every year. I've come to dread the onset of winter. (Sigh)

You asked about diet. That's a very tricky subject. Some people argue that diet does not effect their p in any way shape or form. Others say that their p gets better if they avoid certain foods. One of the biggest proponents of diet and p is a chiropractor named John Pagano. He wrote a book called Healing Proriasis. I haven't read it, but I understand that diet changes are among his many recommendations. I've read here that he suggests that people avoid nightshade vegetables, which include tomatoes, potatoes, peppers and eggplant. Other people say that they have to avoid foods made with yeast. I personally have never noticed if food affects my psoriasis. (I have a diagnosed allergy to tomatoes. I also have other allergies. My typical allergy symptoms resemble a bad cold. I eat a lot of tomatoes and don't get any cold like symptoms from them. I've tried to cut back on the amount of tomatoes that I eat. I haven't been able to completely give them up. I mean we're talking about pasta sauces, pizza, ketchup, etc. I wish that I had more willpower. Maybe my p would get better.)

Finally, you asked about UVB light treatments. Here's a link to the NPF's discussion of types of light treatments that are available for p. http://www.psoriasis.org/treatment/psoriasis/phototherapy.php. MY derm and I have discussed doing UVB treatments for my hands. Unfortunately, it's very time consuming ... you have to go three times a weeks and that's hard to do when you work full time. (Sigh) Here's a link to one company's information about a UVB unit for scalp p (it looks just like a blow dryer!): http://www.natbiocorp.com/home/dermalight.html. YOu asked about insurance and UVB. From what I've read here, some insurance companies pay for UVB treatments, other require some sort of co-payment and others give their psoriasis patients a very hard time. You might have to work with both Andrew's derm and your insurance company if you decide to try UVB treatments. The NPF also has an Insurance Advocacy Service. Here's a link for some additional information: http://www.psoriasis.org/medical/advocacy/.

Sorry that this turned into a novel.

Hope this helps.

Good luck. Keep us posted and please don't be a stranger.

Mike

[itzlisah]

thanks mike that was very helpful i do daycare so i never get to check in daily like i wish, i really appreciate all the websites im gonna check them out and go get those shampoos before it even outbreaks on andrew no signs yet and for the tomatos and things like that he loves em especially in salads oh my what am i to do :D guess well figure somthing out, his head is the only place he gets it, if i use that stuff on him u said to use a towel or something on his pillow well ill only be able to do it on weekends and holidays when theres no school the kids can be very mean if his head look horrible, and were in process of changing insurance companies so ill have to wait to call them until is al done and said, should i take him to the derm now or wait til theres an outbreak again???? thanks again g2g kids are starting to wake up from me typing bye for now lisa

[itzlisah]

thanks for asking m. andrew appt. went fine no step just a virus running thru his system, think i got it now how wonderful especially w/daycare kids. Mike gave some wonderful ideas as you did as well im so glad that theres a group here to talk to and discuss problems especially as a parent cause it gets really aggrevating for me sometimes casue andrews says it hurts, itches and stings w/meds on when theres an outbreak what can i do for the pain when there is an outbreak??????? and then the situation when he has to go to school w/it even w/a ball cap on the kids ask em y hes wearing it and he tells em cause of my p.
then when they see it the pick on him and everything else that goes along w/it. whats a mom to do????? thing i should go see the derm before an outbreak or wait till the p. comes out i asked mike too????? g2g hope your child is doing better have a wonderful day and HAPPY HALLOWEEN TO ALL
:D LISA

[MikeK]

Originally posted by itzlisah
his head is the only place he gets it, if i use that stuff on him u said to use a towel or something on his pillow well ill only be able to do it on weekends and holidays when theres no school the kids can be very mean if his head look horrible, and were in process of changing insurance companies so ill have to wait to call them until is al done and said, should i take him to the derm now or wait til theres an outbreak again???? thanks again

Hi Lisa,

You're very welcome. Glad I was able to help. Sorry that it took so long to get back to you. It's been kind of crazy around here. I know what you mean. Kids can be very cruel. I used to get teased, because of my p, when I was Andrew's age. :rolleyes: I take it that Andrew takes his shower at night? That does limit when you can use the [b]Derma-Smooth/FS. You can try using it only on the weekends or school holidays. If it doesn't seem to be helping, them I'm afraid that he'll have to use it more frequently. You can also might want to check with Andrew's derm or you pharmacist.

Hope this helps. Keep us posted and please don't be a stranger.

Mike

[itzlisah]

hi how is your child doing w/p andrew is doing okay so far no major outbreak and its been very cold here in maryland im waiting for an outbreak to happen kinda surprised it hasnt guess i better not say too much more might happen and be a bad one havent check to see if you responded my oldest now has bronocotis (however you spell it) lol w/pneumonia in both lower lungs so it hasnt been a very happy household for the past week or so and me doing daycare on top of it dont know what keeps me goin???? sr if i take frustrations or if i bore anyone but this is the only place that i have since all our family is about 10 hrs from us well got to go daycare kids need me now talk later thanks again for listenin and pray that andrew dont get a bad outbreak this year like he did in the past lisa

[itzlisah]

hi its me again i have some questions in regards to andrew and his p. when he went to the derm. they said he had an over abundance of white blood cells and thats why he has a bad outbreak do the cells in your body really have anything to do w/p???? and i was also told that when people are diagnosed w/cancer etc. that there they have an over abundance of white blood cells do you know if that is true and should i have andrews check (the white blood cell count) thanks again lisa

[Marielle]

Hey Lisa
Glad to hear that Andrew is not having a bad breakout right now. But sorry to hear about all the other illness in your household.:( Jessie is doing pretty good. We have noticed that she is getting a few spots on her chest and are putting meds on them right away. Hopefully it is not because of the weather. It has been really cold. This morning it was 16 degrees out. This is your family also. We would never think that anything you would say is boring. You have to come here to vent and even update everyone on Andrew's outbreaks or lack of. That is the only way you yourself are going to get through all this. I am the same way. I would lose my mind if it was not for all the kind people on this site. Well I better get back to work talk to you later.
M