Sam dots

[janetmknox]

I guess my last "thread" did not go through. Hi my name is Janet. I am Sams mom. I have been along with Sam on the teen screen posting threads with some of you. Mike, Hi I made it I think. My daughter has been talking with PJ. Sam has had her dots for 3 years now and we have our own light box for therapy. We also have been through all the creams and oitments. Sometime when I won't get so emotional I will explain how her condition began. All of you seem to know eachother very well and I hope you will welcome a newcomer to your site. Thanks Janet

[MikeK]

Hi Janet,

Welcome! :cool: I'm glad you finally made it :) and that I was able to help. A lot of very nice people post here. We -- both the parents and Sam's fellow sufferers (like me) -- all try to help each other navigate this difficult journey known as psoriasis.

Take care and please don't be a stranger.

Mike

[PJ Leary]

Dera Janet,

Hi, PJ here. Yes, I am a "psor mom" and a psor myself. Your daughter is enchanting, and I wanted to reach out to her and make her feel special and welcome. I hope I did and she does.

I hope you will too. This is a very special place. I would like for you to know that there is some powerful leadership behind the very existance of the caregivers board. It was not so long ago that NPF was very new online. The only message board was the general one, but there was a clear need for one like this.

Originally, NPF was slow in its response to the request. They had many things to do in maintianing the oiginal site and working all of that out. However, some Moms got together and rallied for support from the general board, and from NPF.

The NPF response was to get it up and running ASAP. Same story a bit later with the Teen Board.

There are some really great people here, and I'm sure you will great benefit from being a part of this community, as will Sam.

Welcome.

Regards,

PJ Leary

[Marielle]

Welcome, Welcome, Welcome Janet
Marielle here. A mom of a beautiful 7 year old with P. I used to be able to say with 95% coverage of P but now she is about 5%. This is due to UVB. She is now not going but using the "natural" sun. She is getting a few spots but nothing like she had before. We all have our stories about how it all began...How old is Sam? Does anyone else in your family have it? Jessie like I said is 7 and has had it since November 02. She also is the only one in the family that has it (so far). She was covered from head to foot. The only spot that did not have it was her palms, top of her hands and the bottom of her feet. You have come to the right place for support and to vent. I am staying strong because of people like Mike and PJ. It is people like these that make it better for us and our children. So welcome and if you need anything just hollar. I have to get back to work, busy week. Talk to you soon.
M

[janetmknox]

Marielle, How did you do it? Sam has only been that close to being in "remission" once about a year ago. Were getting ready for summer here and I hope it happens again. What is Jessica using? (Topical) Sam's sores have been cracking and bleeding again. She told me today that her clothes have been getting stuck in them and she has to tear them open sometimes to get off her clothes. How horrible for her. I wish I could do more. She sees her dr. on Tuesday. Hope they give us some good news or new stuff. Janet

[MikeK]

Oh Janet! I'm so sorry to hear about Sam. :(

A couple of months ago, Carrie (Iansmommy) reported that she sometimes has to wrap her toddler son Ian's spots with gauze in order to prevent clothes from sticking. You might want to try that. As I'm sure both you and Sam have discovered, any sort of trauma can make p worse. I'm currently using Protopic on my underarms and in my ears, Dovonex (twice a day during the week) and Ultravate (twice a day on weekends) on my hands, and Dovonex on my ankles. I have plaque p so what works for me might not work for her.

Hope this helps. Please let us know how you make out with the Doctor on Tuesday.

Mike

[janetmknox]

Hey Mike or anyone else who has a opinion, Does P hurt? Sam says it doesn't. Only if it bleeds and gets hit. Also, what are the chances of getting arthritic. Sam's doc says its too early to tell. Sam's dots are getting worse I wish Mr. Sun would get here soon. I hate to use the light box when summer is almost here. Janet

[MikeK]

Hi Janet,

The quick answer is "it depends". I have plaque p, so Sam's might be different. The p on my ankles, groin area and in my ears only hurts if I've scratched it. (Yes, I know ... it only makes it worse .. but sometimes ... (sigh!) :()The p on my underarms hurts when it becomes infected. My hands are the worst. They were very bad this winter. They became cracked and bleeding and very, very painful. It was very difficult to use the computer and/or shake hands. (That's not a good thing. Especially when you're an accountant and are constantly meeting new people.) I was able to get some relief from a combination of Dovonex and Ultravate, frequent moisturizing and the ocassional use of peroxide and Neosporin. Now that the cracks have healed the pain is mostly gone, but I feel a slight twinge now and then.

From what I've read, only a small percentage of psoriasis patients get P.A. I've had p since 1964 and so far so good. The bad news is that I do have an occasional problem with both knees and my derm told me in January that my p had spread to my nails. (I knew that my nails were in bad shape, but I had no idea that it was p.) Joint and nail problems are some of the warning signs of P.A. and I was convinced that I had it. (I even went so far as to bookmark the patient referral information for The Hospital for Joint Diseases in New York.) Now I'm not so sure. My nails are still in bad shape. I still have occasional problems with both knees. (I treat it with some Ben Gay and/or take an aspirin and go on my way.) Part of me says that it's just a part of getting older. (I'm 46.) Part of me says that it might be P.A. I probably won't do anything about it unless it gets worse.

I know what you mean about the weather. It got into the 80's for a couple of days back in April. That was just a tease. May was cool and the heat even kicked on a couple of times. It's been cloudy and rainy for the last couple of days.

Hope this helps.

Mike

[janetmknox]

Hey Mike this is Sams dad Eric. ?have you ever tryed a chiropractor or a massage therapy. It seemed last time we went to & the first time we got her a massage shortly after it went away. (along with summer) The chiro is possibbly are next try.let me know what you think.

Eric

[MikeK]

Hi Eric,

Welcome! :cool: I personally have never been to a chiropractor, so I can't really answer the question. However, I do know that there is a school of thought that says that spinal adjustments can help p. One of the proponents of that theory is a chiropractor named John Pagano, who wrote a book about psoriasis. I haven't read his book, but there's been a spirited debate about it in the General Discussion part of the Board for the last couple of days. (From what I understand, he also recommends changes in diet, among other things.)

I've never been to a massage therapist, but I have gone for massages. They're very relaxing and help reduce stress. Stress and psoriasis do not go well together.

Given Sam's condition, it probably can't hurt to see either a chiropracter or a message therapist.

Good luck at the doctor's tomorrow.

Hope this helps,

Mike

[janetmknox]

Mike, Its Janet. We have the book. It is a very good one. One thing he says about diet is to stay away from tomatos and acid containg foods. Too bad sam's favorite food is Pizza and ketchup on everything. Thanks for your help.

[Marielle]

Boy you are gone for a few days and there is so much to write...Hello everyone...I'm back. Welcome Eric, it is nice to see a dad here. My husband does enough just running Jessie back and forth to UVB sessions to warrent not coming here. Janet I don't know how I did it. Just keeping her spirts up and using the UVB. Right now we are using Protopic for Jessie eyelids and underarms and Dovonex for the other little spots she has. P does not seem to hurt Jessie. Two things have you tried the Aveeno oatmeal baths. They are heaven for Jessie. When her P was cracking and bleeding we would put her in an oatmeal bath for 3 hours and she would come out much better. No itching, no bleeding and her skin felt so soft. I would try it. Lets see next question.....about the PA...It is not PA that we have to worry about it is rheumothoide (sp??) arthritis. Our derm told us to avoid it to keep Jessie stretching. So she is in dance classes and taking gymnastic this summer. She has been having problems with her neck and ankles but we are keeping her stretching. Have not taken her to the Chiropractor yet. Have heard pros and cons about it. About the Massage Therapy...my sister is a Massage Therapist and she has worked on Jessie's neck and ankles but otherwise, says that the derm is right. Keep her stretching. About the diet thing....I say this all the time Jessie has not cut out anything. She eats everything that she always has...tomatos, eggplant, vingar based dressings, even soups with a red wine base. She has not broke out again yet, so I think the diet is okay the way it is right now. I just want to say thank you for coming here. We need each other to get through all this. I learn just as much from you as you do from me. Mike seems to be a great inspriation also. Thanks MIke!! I hope everything went well at the doctors? Well I better get going. Before I make this another 10 pages long. I still have 3 other messages to read. I wonder if my husband thinks I feel asleep down here. Talk to everyone soon.
M

[janetmknox]

Marielle, Thanks for getting back to us. Did you do a typo when you said you give her a bath in Aveno for 3 hrs. I don't think sam could last that long. Anyway we have tried all of the aveno products including the oatmeal bath. It does seem to help. What I can't get down pat is I put the meds on morn. and night right, but then when do you have time to put on the moisturisure? I mean do I call her in when shes playing outside and say lets put on your cream. We try not to make such a big deal about it as it is, it just seems to be so hard to handle for her as well as us. You really don't live that far from us. Is the sun coming your way yet to stay? Let me know. Sam has written Jessica back and waiting her reply. Thanks for all your help. Glad Jessica is in remission, hope it stays gone!!!

Janet

[Marielle]

Hey Janet
No it was not a typo, I would let her stay in the tub for 3 hours. She would have a lot of toys with her and we would have to heat up the water every once in awhile but the longer the better. I was even thinking of putting Aveeno oatmeal in her 3 foot pool this summer. I don't know if that will work. I don't know if Jessie is in remission??? She has spots on her legs, under her arms, her eyelids, and in the folds of her elbows. I still have to do meds every night but it is nothing like spending an hour putting on meds. A few tricks with meds...Make it fun. I only put them on her once a day and during that time she would read me a book or tell me about something she wanted to do. We also played "I spy". It makes putting meds on easier and faster. We also did meds every other day and on the days that I did not do meds we put on the moisturiser. I think Mike told me about that one. Jessie ended up liking getting meds on better when we did that. I will look up where you live on the map. It would be cool to get the girls together. I was thinking that there are a few other mom's and girls from Ohio, Indiana and Illinois that we could get together and maybe go to Cedar Point or something like that. We could camp right by the park and have a fun time. I will try and see what we can come up with. Are you going to the confrence? We still do not know...I think Jessie really would like to. Well I better get back to work. I will tell Jessie that Sam wrote back. Did Sam get to see Jessie's picture on the thread that is Mom introduced to P? Jessie likes it when the kids get to see what she looks like. Talk to you soon.
M

[janetmknox]

Marielle, WOW! I still don't think Sam could last that long. She likes baths but 1/2 hr. is probably her limit. We went to the DR. today to let everyone know, were back on the light box. 3x a week. Even though summer is almost here she is having a very bad flair up. Has anyone ever heard of Embrel. Its a injection. They have been using it for older P patients and it is trying to get approved for children 2 and older. They said its once a week. I don't know for how long. Dr. said to keep it in the back of our minds as a resort. I don't know. I would like to know more about it. I have been looking on the web for more info. Does anyone know a site.
It would be neat to get the kids together. I am a pre-school teacher and am off for the summer also. We do have a 2 year old though. Write back if you have any info.

Janet

[MikeK]

Janet,

If you use the search engine (to the right -- directly under the orange line) you'll find dozens of posts about Enbrel. It's usually prescribed for PA, but it has other uses. Most people speak VERY highly of it and refer to it as their "wonder drug". However, it's not without side effects. It's also been linked to lymphoma -- i.e., cancer in SOME patients. At least one person who posts here (Bluewater) developed lymphoma shortly after starting to use it. Here's a link to the post where he gave us his sad news: http://www.psoriasis.org/forum/showthread.php?threadid=3414

I would think long and hard and exhaust all other options before giving it to my child.

Mike

[janetmknox]

Mike, Thanks for the news. I won't be messing with it. She has been through enought allready. I just did not know as a last alternative. You I'm sure as well as all the others, just wish there was someting out there to end all of this. Thanks for the info. on the search tool. I don't know why I did not look there. We used our light box after soaking in Aveno for a 1/2 hour. I don't know how Jessica made it 3 hours. What a girl. Sam bugs me every 5 min. (is it time yet). We are starting from scatch on the light unit though. 10 sec both sides. We max out a 2 min. Hopefully this time we won't have to go that far. Thanks again,

Janet

[MikeK]

Hi Janet,

You're very welcome. I'm glad that you posted here instead of using the search engine. You might have missed Bluewater's post.

Hang in there. Better days are coming.

Mike

[Marielle]

Hey Everyone
I was just done writing this huge long message and my computer crashed. Yikes! I am trying to burn CD's and write. Janet I just looked up where you are located and you are only 150 miles away. My parents live farther than that. We should plan on getting together this summer. I also have another child who will be turning 1 in June. So even the little ones will have fun. A guess a little about myself...I am 34 (Yikes!), married to a wonderful stay-at-home dad, I work as a pre-press computer tech/designer for a book company. I have Jessica who just turned 7 in March and Jillian who will turn 1 in June. I do a lot with our church and try to do things with Jessie's school. It is hard when you work 40+ hours a week. We live in Jenison Michigan (you know that). I guess that is enough for now. How about you? You are a pre-school teacher? That sounds like a lot of work.
About Jessie...She loves baths. It is really hard to get her out of them normally so try to keep her in is not hard at all. The only problem we have is she misses the bubbles. I personally would not do the Enbrel on Jessie. There are a lot of other things to concider. Our derm's next course of action is to take out Jessie tonsils. Jessie trigger for big flair ups is strep. So that might be what we are going to try next. The UVB was the first try to helping her. Jessie gets strep without any symptoms so we have to be really careful. Well work just got busy. So I must get going. Talk to you soon.
M

[janetmknox]

Marielle, That sounds great if we could arrange it. I am a few years older than you, 36. Sometimes I forget, I sure don't feel it. Yes I am a pre-school teacher. Really my title is director, but I love to work with the children, so I still teach 2 of my classes. I have a total of 80 children in my school. They keep me young and carefree for the time I am with them. I've been doing this for 11 years now. I taught Sam. My daughter Erica's B. day is in June also. The 12th. Sorry to hear about your computer, we just got ours. It's been great.
The light box is back to its self. It seems to be the only way to help mannage Sam's P. It looks alot better just after 1 use.

Talk to you soon. I don't know if I understand the photo stuff, kinda new at it.

Janet

[haldam]

Hello everyone. Welcome Janet.
Mike, I want to thank you for posting the thread about Bluewater and Enbrel. Haley saw the derm today and she says if she is not better in six weeks (poor Haley is getting worse) she would like to try her on Enbrel if I wanted. When she was talking about it, it sounded wonderful! Of course, I have to research everything. After reading Bluewater's post, the benefits really don't outweigh the cons for us. Thanks for posting that, I may never have found it.
Marielle, I have to agree with Janet, how in the world can she stay in for 3 hours!? Haley likes baths, and I could probably get her to stay in for an hour, but no more than that! But, never really thought about letting her soak in the Aveeno for a full hour. Great idea, gotta try that.

Tara

[janetmknox]

Hi Tara, Janet here. I'm glad your not going to use it. It does sound scarry. The doc. seemed excited about it, but I don't want to have my child be the ginnie pig. What would we do with out Mike? I don't think I've met you yet how old is your child?

Janet

[MikeK]

Hi Everyone!

I'm glad that I'm able to help. :) We're all in this together and sharing information is what this site is all about. Knowledge is power! :cool: I read Janet's post and to say that I was terrified at the thought of any child going on Enbrel would be an understatement. I'm forever grateful to Bill (Bluewater) for sharing his story. I heard mostly good things about Enbrel until he told us what had happened to him. I've read a lot of sad stories on this site, but his experience really made an impression on me. He hasn't posted in a couple of weeks. I hope that he's doing as well as he possibly can under such difficult circumstances.

Tara: Welcome back! I'm sorry to hear that Haley is getting worse. Has the derm given you any other options? What about light treatments? I know that Jessie was helped tremendously by them and it sounds like Sam is doing better after just one treatment. I know that they're are time consuming and that some insurance companies try to discourage them, but it may be something worth looking into. In the meantime, have her get some sun. The sun is really good for those us who suffer with p.

Janet: I'm glad that Sam is doing a little better. I hope that this is the first of many good reports.

Marielle: Wow! Three hour baths and one hour to put on meds. (With Jessie fighting you every step of the way over the meds.) I don't see how you do it.

I'll talk to everyone soon. I think that heaven has a special place for all p moms (and dads too). Think sun everyone.

Mike

[haldam]

Hi Janet. No, we have not met. My daughter is Haley, she is 8, 9 in July. We are from Indiana also, but about as far from you as Marielle in Michigan is! Haley's derm was also excited about the Enbrel, which made me excited about it when I left her office. Until I got home and on the computer. For times like this, I am thankful for the internet and this site!
I am trying to get Haley on the youth board to write Jessie and Sam, but it is slow going. She is a bit shy and "doesn't know what to say". She will pop in there one day soon. Hopefully.

Tara

[haldam]

Hi Mike. I had never heard much about Enbrel, but like you, the few things that I did read sounded pretty good. Until Bluewater's story. I just never knew that to be a possibility and I find it incredibly sad. It is already enough to deal with psoriasis by itself, but to add something like that on top of it, that really has to be hard.
The derm had mentioned at her last visit 3 weeks ago about light therapy. But, she said for now she wanted to see what the natural sun would do. This is Haley's last week of school, so starting next week, if the weather permits, I will be shoving her outside every chance I get!! We really hope she is a "sun responder". But if by some chance she is not better in six weeks, Enbrel will not be an option. The good news is that her spirits are up. She is not "happy" about having this, but she is dealing with it pretty well. And for that I am grateful!
Tara

[Marielle]

Hello everyone
How are you guys doing? Welcome back Tara. You were missed. I mentioned something to Janet about all of us getting together and doing something at Cedar Point or something like that and you were one of the people I was thinking of. I have this list at work of all the moms that I talk to and where they are from. Sorry to hear Haley is doing worse. Like I said somewhere on this site....I think my neighbors think that I am crazy because Jessie was running outside with a tank top and shorts in 53 degree weather. But the sun was out and she needs the sun. We are still having major problems with her eyelids. The P is making them swell quite a bit. Here is her dance photo and her eyes are so bad in it that you can barely see them. I guess I am just lucky when it comes to Jessie and water. We even live right by a ton of little lakes, so she is always swimming....You know what that reminds me, I wonder if she can swim in them? I never thought about it before? Yikes!! My husband spends most of the summer down on the beach with the girls.
You know Mike, I once asked God, why he gave this to Jessie. Maybe for me to become a P mom. I don't know. I do know, that I am glad that all these moms are out there. I don't feel alone.
Talk to everyone later. Back to work.
M

[Marielle]

Opps! Forgot Jessie's Photo.
M

[janetmknox]

Tara, have you asked for copies of any of the children's books they have here on p? We got them a couple of years ago and they really seemed to help. We also had to see a phycologist for Sam, she has a great anxiety disorder. The books along with this helped her alot. She seems more at ease with her p. She is going to a new school in the fall, but she has met some new friends here already. I hope the kids at her new school are understanding.

Janet

[Marielle]

Janet
Hey, Just a little note. I brought Jessie down to send a message to Sam. I usually olny write from work. About Sam starting a new school. I don't know if I told you but the NPF has a school packet that has posters, stickers and information to introduce children to P. Jessie did this for Show and Tell and we are planning on getting a packet for the first week of the next school year. It is a really cool idea. How did you get a UVB booth in your house? We fought the insurance company just to have them pay some for the three times a week that she went. Our derms office is 25 miles away and it really wore on my husband who had to take Jessie out of school and clear across town for 5 months. I might need to do some research on that one??? Well I better get going. I have two girls that need to go to bed. Talk to you tomorrow.
M

[MikeK]

Hi Everyone!

Tara: It sounds like you finally found the right derm. :cool: :) Hopefully, the sun will did it's thing and Haley will get some relief.

Marielle: I go swimming quite frequently. I mostly swim in the ocean, but I haven't had any problems from swimming in lakes. (I also go tubing on the Delaware River at least once each summer and have done some mild white water rafting.) Heavily chorinated (sp?) swimming pools irritate my skin. I take a shower as soon as I get home. Everyone and their p is different, but I think that Jessie will be be o.k. Naturally, you'll want to check with her derm. BTW, I apply both sunscreen and moisturizer when I'm at the beach. It's no fun to get sunburned on top of p.

I'll talk to you tomorrow.

Mike

[haldam]

Marielle, I am sorry to hear about Jessie's eyelids. Just curious, how do you treat eyelids? We will have to see about getting together, Haley would love to meet other kids with p. And it would be really good for her.

Janet, we did get the books from the NPF. She really did like them and they did seem to help her. Speaking of books, do any of you know of any children's literature that might be out there about psoriasis? Haley LOVES to read, and thought that might be a route to go with her. Something that's more on her level.

I really do like this derm. I don't know, there may be better, but from experience I know there are worse. And Haley really likes her. But, Haley liked the other one too, so guess that is not saying much. :)
Wow, this is the last full day of school, and we will be free to play in the sun as much as our hearts desire!!! Yippee!!!
Take care everyone...
Talk to all of you later.
Tara

[Marielle]

Thanks Mike on the info about swimming. Jessie would be heartbroken if she could not swim.
We put Protopic on Jessie's eyelids. Problem is that it stings her eyes. I guess every med has a pro and a con.
What is weird about the book thing is my husband is a writer and has been working on a idea for a series of books on P for kids 8-13. It is going to be some kind of adventure with a kid with P. Then he is going to add others like the adventures of the kid with P and a kid with Autism. The more books the more "special" kids are going to be introduced. I thought it was a great idea. We will see how far he goes with it. I work for a book printer so we can get them printed here. Well I better get back to work.
M

[haldam]

Marielle, that is a wonderful idea your husband has. When he is finished, let me know. I can assure you, I will be one of his first customers!
Hope everyone is doing well. Have to get back to work, busy busy.
Talk soon.
Tara

[janetmknox]

hi everyone. We have been busy with a garage sale and end of school. I wanted you all to know the light box and med.s are working great once again for Sam. Her arms are almost scale free. There in that stage that you can tell something was there but what? Were very happy. If anyone is ever wondering if light therapy is for them, I would say give it a try, it works wonders. Its especially nice to own your own, if ins. will pay.

Talk to you soon,

Janet and Sam:)

[janetmknox]

hi everyone. We have been busy with a garage sale and end of school. I wanted you all to know the light box and med.s are working great once again for Sam. Her arms are almost scale free. There in that stage that you can tell something was there but what? Were very happy. If anyone is ever wondering if light therapy is for them, I would say give it a try, it works wonders. Its especially nice to own your own, if ins. will pay.

Talk to you soon,

Janet and Sam:)

[harlea]

Hi Janet,
I am new to this club. My daughter Harlea (cheergirl) wrote Sam in the youth section. This is very nice to have someone who understands and someone to talk to. It is so wonderful to hear Sam is doing better. We were diagnosed only about 2 months ago. 2 months prior to that she had lesions but was misdiagnosed until we went to see a children's derm in Houston. The doc described Harlea's lesions as guttate. Her spots itch sometimes, especially when she is hot. Her scalp really bothers her. We use Luxiq. She is 9 also like Sam. She was very excited to write to her. I also have a 4 yr. old daughter without p, and a 17 month old son with eczema. At this point I don't believe Harlea needs light therapy, but what is it exactly. Is it like a tanning bed? And where do you go to get treatment.
Talk soon.
Kim - Harlea's (cheergirl) mom

[janetmknox]

Kim, Hi Janet here. I and Sam are glad to talk to other people like yourself and your daughter as well. Its been a long time since Sam was first diagnosed. She was first diag. with molescum contagiosum. What ever that is, then it was ring worm, then ezema and other like it. It wasn't until we went to a specialist in Chicago at Childrens Memorial that we got the correct answers. We have our own light unit. Luckily fighting with the ins. companies and jumping through the hoops did pay off. The unit runs about $3,000. Yes, it is sorta like a sunbed. It only has UVB rays though. They are the good rays from the sun. They can burn you though if missused. We keep a log book and a journal of how she is doing. We are under doctors care and it is operated by a key. Our stands about 6' tall and it is about 4' wide. There are others out there, but since we know this is a life time thing we got the biggest so when Sam grows up she will not need to vest in another. I swear by it. You can go to your Dr. and ask where the nearest light therapy is but I know that you have to be rated sever to be a canidate. Sam was rated most sever in Northwest IN. She has come along way. If you have any ? about anything were here to help. There are alot of nice people on this site willing to help. Hope your daughter is doing well. Sam wrote her back too.

Talk to you soon Janet