Hello, anyone out there?

[Marielle]

Well Hello everyone. I get on this message board everyday and am getting tired of seeing the 01-30-2003 as the last date we have talked. So are we all to busy? I have been...I have good news though. Those of you who know me and my daughter Jessie will love to know that Jessie is now at 45% coverage. It has taken 4 months to get her from 95% to 45% but we are very happy with the results. To celebrate we just got Jessie pictures taken. (She would not get them taken before because her P showed on her face and neck). These results have been because of her UVB sessions. I tell you they are working great. My insurance will only cover two more weeks of them but both the derm and I have requested them to continue until May. I hope they will cover them, if not we will come up with the money some how. I don't want to stop them, they are too important right now. Well I guess I should go I hope to hear from everyone soon. Talk to everyone later.
M:)

[MikeK]

Hi Marielle,

It's always good to see you post. I'm glad to hear that Jessie's P has shown considerable improvment. :) That's the best news that I've heard in a long time. I hope that things continue to go well.

Good luck in your battle with the insurance company.

Take care,

Mike

[Marielle]

Thanks Mike for your reply. It has been a tough couple of months but we are making great progress. I do hope that the insurance thing pans out. Our insurance changed in Jan and it has been a battle ever since. Jessie seems to be in great spirits though. She is getting pretty excited that one not only her P is getting better but also that her 7th birthday is in three weeks. Well I must get going. Thanks again for the reply.
M
:)

[iansmommy]

Hi Marielle. I am here. We have just been very busy. Ian is in the middle of a flare that I just can not seem to get a handle on. I am thinking we may be in for a trip to the doctor if it is not back under control soon. We haven't seen his derm since August so we should probably go in for a check up anyway.

Carrie

[Marielle]

Carrie
Great to hear from you...except that Ian is having problems with his P. How is he doing? I could not imagine having an infant with P. It is hard enough with a 6 year old. I was wondering what is going to happen when Jessie actually gets a little clearer. Does she only see her derm when she has more p show up or does he want to see her monthly like he does now? So Ian does not go to the derm regulary. I hope that will be the case when Jessie gets better. Well work is kinda hectic today so I must get going.
Talk to you later
M

[MikeK]

Hi Marielle, Hi Carrie,


Marielle: I have a mild case of plaque P, which I know is different from what Jessie has. Until I started using Ultravate, I only visted the derm a) when she would no longer renew prescriptions over the phone (she insists upon seeing me at least once a year and that's her way of getting me to come in) or b) if it started to spread. Once I started using Ultravate, she had me come in every three months so she could monitor me for skin thinning. She found evidence of skin thinning on my ankles and asked me to stop using it there. Now that I'm using it only on my hands, she has me coming in every six months. It's just like the dentist. They send me a post card. Hopefully Jessie will get to the point to where she only has to see her derm once or twice a year.

Carrie: I'm sorry that Ian is having such a rough time. It has to be so hard with a toddler. My P tends to get worse in the winter (we're having one of the worst winters in years here in New Jersey and my p is flairing very badly.) Hopefully, Ian's latest outbreak is just winter related.

Mike

[Marielle]

Thanks Mike
There is a light at the end of this long narrow road. I am right now still fighting with the insurance company to extend her UVB sessions. I pray that they will. Her derm wants her to stay on them until May. I know what you mean about the winters. Michigan right now is awful. We go from -2 to 30 degrees in one day. I don't know if Jessie gets worse in the winter because she has only had it in the winter. I hope that is the case. She was pretty covered. I also hope we can control it next year. I hope we can start to see the derm just 6 months at a time. That is my goal. Well I better get going.
Talk to you soon.
M

[missholly]

hi mike, marielle, carrie, and any one else who reads this. my name is holly and i'm 19 and i have p, for about 3 years now. i just kinda found this site not too long ago and your posts were among the firsts that i read. i'm really sorry to hear what you all are going through with your kids and personally and whatnot. it sucks, and i know cause my mom cries about this stuff happening to me, and i really just don't know what to do to tell her to stop/ it's not as bad now as it was before christmas...i gave up for a while, and the pain sucked like crap, but like hearing y'all talk about this brings me some comfort. i hope you guys beat this thing, as i hope i beat my own battle. i would not wish this on anyone (well, may be saddam). anyhoo, talk to you soon


holly

[Marielle]

Holly
Thank You for your reply. You know what you should do is get your mom on here. I cried and cried when Jessie was first diagnosed with p. After talking to Carrie, PJ, MIke, Ronnie, Jennifer...etc...I now know that I have a strong support team. We are a family all of us. We are a p family. It is also great support for the young kids to hear about someone who is 19 and dealing with p. Jessie does not seem to mind having p. But I think a lot of that is because 1. she met anohter girl with P and 2. She has one of those cool personalities. I was wondering what it would have been like if she would have got it when she was 16 instead of 6. I think things would have been much different. I think it is better that she grows up with it and has it now. Well I must get going. Thank You for your support and get your mom on here to talk to us. It is the best med for a p mom. I know.
M

[haldam]

There are so many wonderful people on this board. Though I do not post much, I read a lot, and I find some comfort in reading other peoples stories, and all the other supportive people out there! You are really all a wonderful bunch, and I thought you should know that.

First and foremost, I wish nobody had to suffer with P as I am sure all of you wish! But, I must agree with Marielle, since my daughter has to live with this, I am somewhat glad that she started young. I really hope that helps start her on her journey of acceptance, tolerance, understanding, coping skills, etc. I try as hard as I can to teach her these things, but since I do not have psoriasis myself, I can only hope I am doing it right!!
Haley was diagnosed at 1. I also cried and cried and I remember feeling guilty. But, we got some medicine that was a combination of like 5 different things that cleared it right up in like a month. I remember thinking, I was upset for nothing, what is the big deal about psoriasis?!! Then when she was 6 it came back on her scalp and we started using T-gel shampoo, which kept it under control really well, and I still thought, what's the big deal? THEN...it finally hit me. About 6 months ago it started on her face and body and we tried OTC products...it kept getting worse and out of control! Finally went to the derm who gave us corticosteroids for the last six weeks with absolutely NO improvement!! I think the last two weeks of it, I have just wanted to crawl into the closet and stay there for awhile! We went back to the derm last week and he prescribed Protopic. I don't think I have ever known what absolute JOY felt like!! In just a week, her face looks much better!! She has cleared almost completely on her cheeks and ears. Forehead is a little stubborn as is her neck and body, but they still look better!! I don't think the joy really comes completely from the improvement, but from the feeling of finally having control! Even if it ends up being for a short while, we are in control right now, for a day, for a week, whatever!! Our hard work and stress has paid off, even for a short time. We are still battling her head, but that's okay! I believe a little of something is better than nothing!
I do have a question for anyone who might know...her derm referred her to a pediatric dermatologist (he admitted he didn't have much experience with psoriasis in children) but in the meantime wants me to use Olux foam on her head for six weeks. I have heard it should only be used for two, and am wondering if I should call and question this? He also has us using some sort of corticosteroid shampoo, and I worry that is too much!!
Good luck to all....
Tara

PS: Marielle, I am really glad to hear about Jessie! I hope all keeps going well for her! Good luck with the insurance!!
:)

[MikeK]

Hi Tara,

I'm glad that you posted. I was a little worried about Haley. The last time you posted (I just checked it was back on January 29th! ), Haley's scalp was in pretty bad shape and her derm was resisting your efforts (at Marielle's and Ronnie's suggestion) to prescribe Luxiq foam and Derma-Smooth for her. It's now March 4th and it sounds like she's still in very bad shape. :mad: Forgive me if I'm wrong, but I'm guessing that he never wrote those prescriptions! :mad: Did he ever explain why? Unless Haley has an allergy to peanuts (Derma-Smooth, from what I understand, has peanut oil in it), I see no reason why Haley shouldn't be using it along with the Luxiq. Luxiq is a steroid, but Derma-Smooth sounds safer then what he's been prescribing for her.

Now getting back to your specific questions. Olux foam and a corticosteroid shampoo!?! That sounds a bit much to me too. I think you would be wise to call and question him. If he still insists, then I would trust your judgement and limit their use until you can get in to see that pediatric derm.

Good luck and please don't be a stranger.

Mike

[Marielle]

Tara
Thank You so much for undating us on Haley's progress. I think Mike is right. It does sound a bit over kill with what he is prescribing. I would call him and tell him that you were on this site with other mothers and they told you these things work. (Derma-smoothe and Luxiq) I personally have been slacking on putting them on Jessie scalp because the Tea Tree shampoo has been working so great. But last night I realized that Jessie was scratching her head a lot. So I checked it out and she has big spots and her hair is falling out in them. I thought not again. We have come so far. So I put the Luxiq on her and she stopped the scratching. As Mike said about the Derma-Smoothe it has peanut oil in it and I am allergic to peanuts so I need gloves to put that one on. (I found out the hard way that it has peanut oil in it) Jessie's derm has never said anything about a ped derm??? I know that Jessie is the youngest paient he has ever seen but he is wonderful. He even comes in and teases her about her tan. So I think he is a keeper. I think he also realizes that my husband and I are smart people and are researching everything we can get our hands on, because everytime we go into his office he will ask us if we have read about this or that...usually we have. Hey I noticed on the general page that someone put up a photo so I am going to try and put up a photo of Jessie. This was taken on Christmas Eve. I think that this photo is so cool because it lets you know how Jessie really feels about her p. She wears it right out in the open. Hope to hear from everyone soon.
M

[GERRYW]

Marielle,

I usually do more posting on the other message board since I have P but I like to check in here since my 7 year old daughter Allison was diagnosed with P in November. I know how to treat myself but it helps to read what others are using to treat their children since you need to be so much more careful with using meds on a small growing child. I just had to drop you a note and tell you how beautiful you daughter is. You must be so proud of her and how well she is handling having P. It's not an easy disease to deal with (especially since it never quite goes away) but with a wonderful Mom like you, your beautiful little Jessie will grow up handling this just fine. God bless you and all of the other moms out there who are battling P day in and day out. Well, I gotta go...my Allison just came into my work office...delayed school opening because of ice. A mom's work is never done but it's the best job in the world.

Gerry Anne
P.S. I love Derma-Smoothe for both me and my daughter.

[haldam]

At our last appointment last week we asked him about those (dermasmooth and Luxiq), but he didn't say much of anything. He said he would like to try the Olux foam and shampoo for now, and if the pediatric derm wanted to change it then she could. To be honest, at the time I was actually okay with that because at least he was finally prescribing something I had actually heard of being used for P. Until I researched it....and I really AM NOT comfortable with using it! Called this morning, had to leave a message and just waiting for a call back.
Marielle, what a beautiful girl! You must be proud of her and I hope that she is proud of herself for her wonderful attitude. Six weeks ago I was really concerned about Haley, she seemed to be becoming somewhat depressed. But in the last 3-4 weeks her attitude has completely changed and she is back to her old self and is becoming more open. I just hope one day she can have that same attitude as Jessie and wear it out in the open (she still won't wear short sleeves in public). I am really glad you posted the picture, I think Haley thinks I am lying to her when I say there are other kids out there! And I think at least seeing Jessie and knowing she is not alone will make her feel better.
I would definitely agree....it is the best job in the world and wouldn't trade it for anything!

Tara

[Marielle]

Gerry and Tara
Thanks so much for the comments about Jessie. I thought if we started posting pictures the kids would not feel alone. I have this picture (along with one of my youngest) as my wallpaper on my computer at work. Jessie was so excited to see it up there. My husband said that I should have picked a photo that did not show her p so much. I told him that everyone has to get used to seeing Jessie like that because she is going to have it for life. He agreed. Jessie does look better than that now but who knows it might come back.

Gerry
How is Allison doing? Jessie was also diagnosed in November. When diagnosed she was 80% covered. By December she was 95% and that is when they started the UVB treatments.

Tara
I hope your derm listens to you. Have you thought about calling the ped derm that you are getting the appointment with. I would call and leave a message and tell the ped derm what the derm is prescribing for Haley. That might either 1. get you into see the ped derm faster or 2. getting the ped derm to prescribe what you think you need.

Are any of you going to the confrence in August? It is about a 3 hour drive from here and we are thinking about making it a family vacation. I really don't know if we are going or not yet.

Well back to work
M

[casalewis]

I'm amazed at the emotions Im xperiencing right now. Your site has me in tears- scared...relieved...scared again...hopeful...my son (just turned 6) was diagnosed w/guttate and scalp P just before Xmas, after a bad bout of strep. That was the 2nd (strep) round, the 4th round was at the beginning of Feb.
Tara-
reading your post was like reading my own journal. When I first heard about P, I didn't have much of a sense of what was involved. He cleared up so quickly at first. Kyle is only moderate at the moment, but we can't seem to knock it out. I've been putting Locoid on him 3x/day since the first of Feb, but no change. Last week I got my first glimpse of what we might be in for over the long haul- a patch on his pelvis as big and solid as my whole palm, and I began to feel scared.

I just joined this site today, but the collective wisdom and support here is really encouraging. I'm in the process of looking for a derm who is very familiar w/P, and trying to familiarize myself w/treatments and side-effects :(

Just curious-- he was on Keflex (cefalex) both times P hit. In fact, his last bout of strep they put him on a 20-day course of Kef, and the P seemed to get progressively worse the longer he was on the antibiotic, even tho the strep was long gone. Now we can't seem to get rid of it and the derm has prescriped 'Dovirex'? Anyone w/similar exp?

Kind regards to all- and high hopes for the future!

[MikeK]

Hi Everyone!

Tara: Gerry said it all: "you need to be so much more careful with using meds on a small growing child." It's probably o.k. to use the Olux foam for a couple of days, but I have a serious problem with using it for six weeks. I'm 46 and my derm limits the use of steriods to the weekends only and carefully monitors my progress with follow-up vists.

Marielle: Thanks for posting the pic. You have a beautiful daughter! I'm very proud of her for the way she's handling her P. I've had it since I was 7 and I know that I didn't handle it half as well as she does when I was her age and I had a very mild case! You recently mentioned that she's got a birthday coming up. Please wish her a happy birthday from me and tell her to have fun being seven. That's such a really cool age.

Casalewis: Welcome! You're in the right place. There's some really great people who post here. We're all in this together. I'm not a parent, but I've had plaque p for almost 40 years. The voice of experience (both from the parents and Kyle's fellow sufferers) will help you get through this!

Mike

[Marielle]

Casalewis Welcome to our p family
How are you doing? I understand everything you are going through. I personally am still going through some of it. Jessie is getting better but I still sometimes have to sit back and cry. I think my belief in God is that He gave this to her for a reason. I don't know why yet, maybe to make me a stronger person, Jessie was already a strong willed kid. What has helped Jessie is UVB treatments. Otherwise all the meds have not really worked except the scalp meds like Derma-smoothe and Luxiq. We are now seeing some spots coming back on her chest and arms and I am using Elidil on them for now. That is what has been working on her face. Talk to your derm about the removal of Kyle's tonsils. I have heard wonders about that. Especially since he has had the strep so bad. Jessie's derm said that will be our next course of action. Where are you located? I guess weather has some effect on P. I do not know this yet because Jessie has only had it in the winter. We are in Michigan and the winters here seem to go on forever. Just remember we are all here for you. If it was not for all these great people to talk to and read there stories I think I would have gone crazy a month ago. So keep your chin up and be strong for Kyle.

Mike
thank you for the birthday wishes. She will be 7 on March 17th. She can't wait. I think being 6 was a trying time for her and she is ready for 7. I showed her yesterday that I put the photo on the site and she was kinda taken back by it. Then I showed her all the wonderful things that people were saying about it and she smiled and said am I really going to help these other kids with p? I asked her before she met Mikey did she feel like she was the only kid out there that had this? She told me yes! I then said that is how all these other kids feel. She smiled again and asked me to put up another picture. What a kid :) Also thank you for all your support. I may sound in control and strong but deep down inside I am really worried. When her hair started getting bad agian (when I noticed the other night) I just sat back and cried. We have come so far and to have her slip back a little is scary. Well I better get back to work.

Talk to everyone later.
M

[haldam]

Casalewis - I think you have made a wise decision to research!! The ped derm Haley will see in six weeks is actually the one she saw at 1 (she was wonderful), and I opted not to go back to her because she had moved kind of far away. I decided on the family derm who worked for the same group, he was a lot closer!! I just assumed he would be okay because they were in the same derm group! But, now I really do regret that decision and wish I would have asked questions first. Now I will be grateful to drive the extra distance for the ped derm!! As far as treatments, if I would have researched more, I would have put my foot down on the Olux foam in the office if I would have known then what I know now. So, research, research, research!!!!!
Did talk to the doc office last night. Took your advice Marielle...left a message with the ped derm also (who wasn't in the office yesterday). Well, guess her nurse called our current derm, because his nurse returned my calls (both the one I left for them and for the ped derm, how frustrating). Well, they won't give her anything else, "when the doctor prescribes a medication he knows what he is doing", "it is not only perfectly safe to use on children, but perfectly safe to use for six weeks or even longer, so don't always believe what you read on the bottle, in the leaflet, or anywhere else". Well, when there is nothing to support what she says, that is kind of hard to do! When I voiced my concerns more strongly, she said if I didn't want to I didn't have to use it, or I could use it just once a day, but that wouldn't help her, and she wanted to "remind" me "that we are trying to clear this up" (as if I didn't know that). So, a bit confused right now in what I am going to do, have to do some serious thinking. She did not relieve my fears, and I DO have a serious problem also using it for six weeks (really even two bothers me).

I showed Haley Jessies picture last night. She said "she is pretty". :) She wanted to go (last night) to meet her. I told her she lived in Michigan and now she wants to go to Michigan. :)
As far as the conference, am undecided right now. Have to wait and see how finances are at that time. If I can talk her dad into going, then might be able to swing it, but that might be a tough one! So, will have to let you know closer to then.

[GERRYW]

Hi everyone,

Haldam-I would never tell a parent what to do with their precious child but I can tell you that I would not use Olux on my Allison. Not until I exhausted many other options and none were working. Olux is the steroid clobetasol propionate and it is one of the strongest steroids out there. I've never used it on my scalp but I have used it on my body. It is very strong and used too much it can cause skin thinning. Also when using it on the skin you need to gradually wean yourself off of it or the P can come back fast and furious and worse. Olux is now approved for use on the body and so I asked my derm if I could use it. Thought the foam would be easier to apply all over. She told me No. I would be absorbing way too much of a strong steroid. Now I know we're only talking your child's scalp but I would still look for other options. In fact, I have clobetasol ointment at home for myself and I know it would make my daughter's P go away, but I would never use it on her. The goal for me is not just to make her P go away but to find a way to make it go away that's the most safe for her. Especially since P will probably show up again and again in her lifetime and more meds will have to be used. I don't see this as a one shot deal (unfortunately). I can't believe the doctor's office talked to you that way...that really upsets me. You hang in there and do what you think is best for your baby.

Marielle-Thanks for asking about Allison. She is doing great and her P is, well, it's still there. She started with just a few spots in Nov and since then has developed spots on every part of her body and a lot on her scalp. We started with the mild topicals and are gradually moving up. The current med has slowed down the "growth" of her P but it isn't making it go away. She has an appt. with our derm in a few weeks. I think UVB might be the answer but my derm wanted to try some other things first. But maybe after this visit she'll change her mind. I go 3X a week for UVB myself so maybe a home light box would benefit us. My derm is a mom with young children so she tends to, if anything, err on the side of caution which I think is a good thing. Overall, I think Allison is handling it well. Both Mom and Uncle Tom have P and amazingly enough a girl in her school and grade who goes to the same after school program has it also. I couldn't believe it. She has her moments like when she curled up like a ball at gymnastic and said she was tired. I knew inside that it must be the P. So she started wearing a less revealing outfit. I know from personal experience that there are times that you feel open and comfortable with those around you and then there are days that you want to be a little covered up. What ever makes you happy and comfortable with yourself. And that can change from day to day since P seems to change from day to day.

Hang in there everyone!

Gerry Anne

[casalewis]

Thank you all for your warm welcome. We're in St. Louis, and yes, the winter here has been long.

Haldam/GerryW- I had made a mental note about your concerns/remarks about Olux, but they didn't raise any red flags for me until the ingredients were mentioned. Then I went to look at the solution the current derm had given me for Kyle. It is Clobetasol Propionate (.05% solution) and we've been using it 2x/day for several weeks.

At one point, I did ask the derm @ side-effects from any steroids in what she had p'scribed...her response is that any absorption into the body is negligible:confused:. I wasn't satisfied at the time, and definitely not now, hence my quest for a derm who is actively involved and interested in P specifically.

Marielle- Your daughter, Jessie, IS beautiful, and apparently inside as well as outside. Kyle, so far, seems to object more to having to stand still long enough to have lotion applied to all his spots than to the P itself. Kids are amazing. God covers us all.

Take care and kind regards to all. I'm off to do some investigating. :eek: :)

[Marielle]

Tara
Have you tried the Physician Directory on this site? It might be time to pick a few new derms. I guess I should thank God that we got the derm we did. He prescribes everything I have mentioned to him. These are of course meds that were recommended by mothers with p children. When I go home tonight I will tell you everything Jessie has been on and what has worked the best. Our derm also has told us that when we use a steriod cream that he wants her on it for two weeks on and two weeks off. So that is what we have been doing when we have to use them. I agree with Gerry...follow what you think and what you read about the Olux Foam. Have you tried T-Gel shampoo or Tea Tree by Paul Mitchell? I would try them before going any further with the meds. Jessie has a few spots right now on her scalp for we are now doing Derma-smoothe every other night but otherwise she is using Tea Tree Shampoo. It is weird that we have come so far in such a short time and then when we spotted some spots popping up my husband freaked! He said that he thought that we were done having spots show up on her torso and arms. (The 40% that she is covered right now is on her legs, feet, some small spots on face and her scalp). I guess this is what will happen always. I think Michael (my husband) was hoping since she was getting so much better that she going into remission. Maybe the girls will meet some day. We can always try to meet somewhere fun like all of us "northerners" meeting at like Ohio and go to Cedar Point or something like that. Just a thought.

Gerry
I would love a house UVB unit. She is going twice a week right now but she was going three times a week for about 3 months. I hope that the UVB unit will help Allison like it helped Jessie. Like I said above she is getting pretty cleared up and now she is getting a few spots here and there. Nothing like being covered everywhere except her bottom of her feet and the palms of her hands. Well sorry to cut this short but boss man just came in and wants to meet with us about something.
Talk to everyone later
M

[iansmommy]

Marielle, Jessie is beautiful!! She has such a great attitude. Ian is doing better. We have finally gotten him cleared up again. I think he is going to be one of those that gets worse in the winter. We have been finghting his asthma the past week and a half but around here the weather has been all over the place. It is 60 today and it was 34 yesterday. That's Oklahoma for you. :)

Carrie

[missholly]

marielle,
the thing, my mom can't come on this site because we're asian, and she speaks english okay, but she really can't type out any words. it's hard for her, as i imagine it must be hard for you all to deal with this. it's like, these are your kids, and they used to be normal, and now, you can't do anything to make it go away...you just have to accept it and treat it best you could. but hearing from you guys just gives me some hope. i really do think they might get a handle on this in the future, in my life time. :)

[haldam]

Hello everyone! I hope all of you had a wonderful weekend.
After reading everyones comments, and researching more indepth, I did decide not to use the Olux. Gerry, I agree with the fact of finding the safest way to make it go away. Since I have not found one person or one thing to support the nurses statement that it is perfectly safe, I cannot do something I am so uncomfortable with. Thank you everyone for your help.

Just a little happy note....we started giving Haley every other weekend off for her head, because that is when she goes to her dads. Usually she comes back on Sunday and it is a mess. She got home today, and it actually is looking better than it did Friday! We cross our fingers that maybe something good is going on here! Will have to keep you posted...

Marielle, yes we had actually used T-gel shampoo and conditioner for a couple of years, which helped really well to keep it under control, then suddenly stopped. We then switched to MG-217 and then to Pentrax, without much success. I think she has just stopped responding to the coal tar for now. But, her face and body are doing well with her new med, so one thing at a time. The good thing is Haley has tended to clear in the spring/summer, so we are just holding on to patience until then, and then maybe our luck will come again!
How is Jessie? I hope all is going well and still improving!

Carrie, how is Ian since you last wrote? Has the asthma gotten a little better? Just seems like so much for such a little guy!

I hope everyone had a wonderful weekend! I am off to get ready for bed and start the week all over again! Busy week for me, so if I don't talk to all of you for a few, wish you all luck and hope all goes well!!
Tara

[cjswint]

I thought you might be interested to know I tried a foam that is for the scalp...called Luxiq foam...AWESOME!!! Itched more for a day or two then started to help...might wanna look into it.

[Marielle]

Helllo everyone
Another weekend over and back to work.

Tara
Good for you on your decision on not to use the Olux. I agree totally. I am so glad to hear that Haley is showing some improvement. Jessie is doing okay. I have noticed that her scalp is getting worse and that there are a few spots showing up on her torso and arms but nothing like before. Her derm is keeping her on UVB until May 5. Then she will be outside in the sun. Hopefully we will have sun then. She has good skin for tanning. I personally am a redhead with the redheaded complexion, so I burn being out in the sun for 5 minutes. So glad she did not get my skin type. It would be awful with P.

Carrie
Hello. How is Ian? I hope he out grows his asthma. I out grew mine. I think Jessie is probably be one of those kids that gets p worse in the winter. We are at 1 degree right now and they are calling for 50 by the weekend. Maybe spring is here. NOT!!! Michigan has a problem with snow in May. But at least Jessie will have nice spring like weather for her birthday on Saturday. They grow up so fast. She is going to be 7. Yikes!!

Holly
I would then read or let her read them. I don 't think I would be half as strong as I am if it was not for this site. When you talk to other parents it is like you are not alone. Which you aren't. That is why I call this our p family because I feel like everyone is family. I have received more support from this site then anyone in my family. They just don't understand what we do and go through everyday. So keep trying to get your mom on here to read and let her know we are here for her and you.

Well I must get back to work.
I will talk to everyone later.
M

[casalewis]

Hello all-
I'm getting very worried about the length of time Kyle (he's 6) has been on Locoid and a .05% Clobetasol Propionate solution. I've asked the derm and the reply is that any absorption into his system is nominal, therefore negligible. I've been applying the Locoid approx. 3x/day since Xmas, w/only a small break in Jan, and the Clobetasol 2x/day for only slightly less time.

Over the last few weeks, the smallest thing that doesn't go his way can send him into a rage. I don't know whether this is a behavioral issue or related to his meds, but it is a big problem, with outbursts not quite but almost daily at this point. This type of defiance, anger and disrespect is completely out of the norm for him and I need to know whether the meds could be a contributing factor. I would like to take him off completely and look for something else, but I've been reading about this "rebound effect" and don't want to do more harm than good.

Maybe the derm is right-- the steroids in these meds are not strong enough to cause a problem and this really is a stage he's going through and continuing to discipline him is the answer.

[Marielle]

Jen
Hello. If I were you I would be worried. Have you researched the side effects? Do you trust your derm? I guess that is a big question you have to ask yourself. Our derm told us not to use the steroid creams more then two weeks at a time. Jessie was using the .05% Clobetasol Propionate and we had two weeks on and two weeks off. I don't know if he does this because Jessie is the only child he has ever seen or if that is how it is supposed to be. I know also how 6 years old behaves, good luck!! Jessie now thinks that since she has p she can get away with more, like not cleaning her room because she itches, or helping set the table because her wrist and knees hurt (She figured out that the derm keeps asking her how her joints feel, so she put two and two together and now has her joints hurt when she does not want to something). Well I must get back to work.
Talk to you later
M

[casalewis]

Good morning!
Thank you. I didn't want to be overprotective, or to make excuses for him for poor behavior, but my gut is telling me there's more to his recent disagreeableness than just a "stage" I need to clamp down on.
I've found two ped derms (thru this NPF site) & made appt's, but they are not until the end of April. Looking into the side-effects first prompted me to question his present derm, and it was her responses that made me feel like maybe I was worrying needlessly.
Now, I think I'll talk to the pharmacist about how to decrease and end the current meds and what to substitute with.

Any suggestions?

Have a great day. Weather here is warming up (yeah!).

[Marielle]

Hello
I have a sister-in-law that is a pharmacist and I can e-mail her and see what she thinks. Every time she comes over I hand her all Jessie's new meds and she tells me what I should watch out for with each one of them. If she does not know about one she looks it up for me and will tell me. She likes doing that because she gets to research meds that she does not know about. The weather here is getting beautiful also. It is 33 degrees here today. Yeah!! I can't wait until the sun is out and it gets to 70. Jessie will bask in the sun not a UVB booth. Well work just got a little hectic.
Talk to you later
M

[MikeK]

Casalewis: On the old kids board, one of the P moms observed that her son learned that he couldn't control his P so he tried to control everything else. There's no excuse for it, but I can't help but wonder if Kyle's recent behavior is brought on not so much by side effects of his meds (although I agree that's something that you need to explore), but because he's trying to control the things that he thinks he can control. Just a thought.

Good luck!

Mike

[PJ Leary]

Hello,

I have made a choice to use Olux in conjunction with aggressive UVB for a rapid clearing after a strep infection.

I did this last year with rapid results in less than 3 weeks. 90% to under 10%. Clearing the infection was the key.

I will post again next week with the final results. I'll either be clear, or not.

Regards,

PJ Leary

PS The good news is that I itch like crazy

[iansmommy]

Tara,

Ian is doing much better. We had about a week that was really hard. He is still my little spotted man. At least his P is back under control. I really am beginning to believe that something in the asthma meds helps. His P seems to be better when he has to use the breathing machine. hmmm........ His asthma is also good, for the moment. We are down to just maintaince meds. 1/2 a singulaire and 2 breathing treatments a day. I will attach a pic or two of Ian and some of his spots. He desn't sit still long enough to get really good shots. The pic is off his back and neck. I resized the pic so it would be fairly small and hopefully not lock up anyones email.

Carrie

[Marielle]

Carrie
Ian's picture is cute...but we need to see his face also. :) What a head of hair. My girls never had that much hair. I am glad to hear that Ian is doing good. Jessie is doing really good. They might even take her off the UVB soon. She is now at about 10% coverage, which is a far cry from 95% in December. She just had her 7th birthday so I now can call her my 7 year old. She is very excited about everything. The only worry I have right now is she is having problems with her toe joints. She is in Ballet and could not stand on her toes because they hurt. So we will mention it at her next derm appointment. Otherwise, we are doing okay. Well I better get back to work.
M

[iansmommy]

Sorry I couldn't get him to turn around. His face is at www.geociteis.com/tessas_place. we have a recheck at the dermatologists on Monday. I will post an update then.

[Marielle]

Carrie
Hello. Well I went to the site and saw Ian's face. What a doll. You must be so proud. How is he doing? Jessie is down to 10% coverage and is going to UVB sessions twice a week until the 25th of April. Then the natural sun is going to take care of her. (hopefully)

Do you have P in your family somewhere? We can't find where it came from. The problem is I was talking to my mother the other night and thought what if one of us has P and it just has not come out yet. That is when my mom started talking about all her spots that are dry on her arms and she has been having problems with her scalp (I told her to try T-Gel and she loves it). Mom had major sun damage last year when they went on vacation. She went to a regular doctor then to take care of her "damage". FYI We are red heads, very light skin. Should I see if she needs to see a derm? Her skin damage from the sun last year left white spot all over her arms and legs. These spots are itchy and she says that all they are is where the pigment disappeared from her skin. They don't remind me of anything that Jessie has but then there are other kinds. I guess maybe I am grasping at straws to find out where Jessie got this. I also don't want my mom (if she has it) to get as bad as Jessie. I will take any advice.
Talk to you later
M

[MikeK]

Marielle,

I think you're mom would be wise to see a derm. I don't want to alarm you, and it's probably nothing to be concerned about, but skin cancer was the first thing that came to mind when I read the words "skin damage from the sun".

Good luck.

Mike

[Marielle]

Hey Mike
Glad to hear from you. My mother gets checked for cancer every year becasue she has had cancer. She did get the spots checked by her cancer doctor. They came back clean. I am just wondering if she should go to a derm. She showed me her scalp at Jessie's Birthday party and it was clear, but then she has been using T-Gel everyday. I guess I should ask her to go and see a derm. I just have to stop thinking that someone else in the family might have it also. Is it your mother that is going to a derm to get herself checked? Well I better get back to work. Talk to you soon.
M

[MikeK]

Hi Marielle,

I'm glad that she had it checked. :) I was worried. It still couldn't hurt to see a derm. It might be p, but then again it could be one of any number of things. Last summer, I broke out with what I was convinced was guttate p on my face and chest. (I have plaque p everywhere else, but this looked just like the pics of guttate on this site.) My derm ordered a biopsy, just to triple check. It turned out to be some kind of a rash and it cleared after a few applications of prescription lotion.

Mom's derm appointment, which she made at the beginning of December, isn't until April 28th. That was the earliest they could get her in. So we still won't know for sure for a couple of weeks.

I'll talk to you soon.

Mike

[Marielle]

Hey Mike
So did you ever wonder where the P came from in your line and now that your mom is getting check is it scary? I am so worried that it is going to show up somewhere else in the family. If it is me or my husband or my other daughter, it would not bother me as much because we know how to handle it emotionally and physcially now. But if my mom ends up with it I don't know how she will react. She might even feel like she gave this to Jessie. Knowing my mother she would worry tons that she passed it on to us. I just think that she should go to a derm to find out it is nothing.
Well I am going to see the other site. Talk to you later.
M

[MikeK]

Hi Marielle,

Yeah it is kind of scary.

It's kind of funny that you asked. This Spring is going to be the 39th anniversary of my diagnosis. I was 7. No one told me that there was no cure or that it was genetic. I just knew that I had this dry, itchy, ugly, flaky, red skin on my legs and that I had some sort of disease that had a name that I couldn't pronounce or spell and that never seemed to get better. It wasn't until I was in college that I started to do some research on it.

Once I found out that it was hereditary, I started to wonder where it came from. My younger brother and sister didn't have it. Neither did my cousins or my parents or any of aunts or uncles. One of my grandfather's died before I was born. Both of my grandmothers died when I was very young. No one can remember any of them having any problems with their skin. My other grandfather died when I was in high school. He didn't have any skin problems. My grandfather's (the one who died young) sister didn't have it and neither does any her children or grandchildren. I have some distant cousins (on my mom's side) who live in upstate New York. I've never met them and they're the only unknowns as far as p is concerned. My mom writes to them from time to time and I really should ask her to ask them about it. (They are on my Christmas card list, but I feel kind of funny about sending them a letter on my own.) All four of my grandparents came to this country, from Europe, before World War I, and eventually lost contact with their families. We don't even know if there's anyone left. :( So I can't research the family history as well as I would like.

I know what you mean about your mom. Mine hasn't even been diagnosed yet and she's already expressed guilt that she may have given it to me. She would be devastated a) if she had it and b) if my two nieces (12 and 5) or my 8 year old nephew came down with it.

I'll talk to you soon.

Mike

[iansmommy]

Marielle, I have very mild eczema and my mom says that her dad had either eczema or P. She is not sure which one. Ian is doing well. We saw the derm about a week ago and he is now on TMC mixed in Eucerin cream. It is a compounded med. I love it! Ian was just using plain TMC (triamcinolone) but because his skin was so dry our derm wanted to try something a little different. Ian is looking great! He has very few spots and his skin is not looking so "peelly". We see the derm again the beginning of May for a recheck.