Hi everyone! I'm Drea, mom of 7 year old Gabe who has psoriasis. Some of you may recognise me from the other forums. He has it on his right hand, both feet and gets spots on his legs, back and stomach. We have had no success clearing his hand and his feet so we started PUVA about a month ago. I was hoping for faster clearing, but that's not to be. His hand still looks pretty bad, and school is starting on Monday. Yikes! Second grade.
I figure you "young folk" could be the most helpful in advice about how to help my son. Up until recently, his p hasn't been too terribly bad. But we are entering a new age, and kids are going to notice his hand, his legs.... I hate the thought that he could be teased. I had an article about "tease proofing" one time, but I can't find it now.
I'm going to put together a presentation for his class about p in hopes that it'll help the kids to accept him if they understand what it is that he has. What else can I do, though? If he is teased, is there any one thing that you think could help him not feel so bad about himself, and not feel so bad about his p? Is there anything I can really tell him that could make things a little bit easier for him? I just keep telling him that he's more than his skin and that he's still a great kid, etc. I don't know how effective that is, but I suppose at his age, what his mom says can be a pretty big deal.
Your advice is appreciated! You may PM me if you'd prefer.
Drea

Hello, my name is Tom, im 37, but was diagnosed with psrs as a child, severe case. I would like to offer any advise, Ive been on most EVERY therapy there is over the years and Im currently doing quite well. Bless your heart for helping your child by speaking with his class, sounds like your doing all you can. Ive been thru puva, light therapy, blood thinners (poison), liver biopsis, the whole deal. would like to offer you my e-mail. Good luck super mom, keep up the good work.

Hey!
Well first of all, he is sooooooooo lucky to have a mom like you who cares so much about him... I hope every kid with psoriasis is that lucky!
Second of all, youre his mother, and you want the best for him... obviously... but it is very hard to determine how the kids around him will react, and how much it will affect him....
I think it has something to do with the way i was raised, but i was, and am a very confident person, no matter what the situation...I hope that it is the same for your son, though it may not be. As a person confident in myself, i was often able to just shrug off comments that my peers made.... You said youre not sure if it helps when you tell him he's beautiful inside, etc.... but trust me, dont stop! It does help! If it wasnt for my mom and dad constantly reassuring me that my skin wasnt who i was.... and all that other jazz, i dont know if i wouldve been able to get by... Knowing that my parents loved me no matter what i looked like was a constant source of confidence and support for me.
Putting together a presentation for his class is an AMAZING idea, and if you would like any help with that, please ask me!!! Also, i would recommend contacting the psoriasis foundation... they have a little pamphlet available meant specifically for teachers/caregivers, and i found it was also helpful to explain psoriasis to some of my peers... It is just a little card that you can give out that explains kind of what psoriasis is and the effects it may have on him. You can give them a call (1.800.723.9166).... and just ask them for the resources they have to share with childrens teachers..
Im not sure what else to say except that just be there for him. Be sure you keep asking him how he's doing, keep encouraging him and let him know how much he means to you and how he's special no matter what kids say. Kids are harsh these days, and they tease and whatnot no matter what, having psoriasis just makes that 10 times harder.
He'll suffer some teasing, inevitably... but i was once told that psoriasis is a disease thatll either make you or break you, and you cant let it get the best of you..
Encourage him. support him. love him unconditionally... he may have some emotional bruises.... but he'll get through it and be a better person in the end!
thats all for now!
-KimberlyJoy-

Hey,
Kim said it perfectly. You are a great mom and just remind him that he is not alone, that other kids just like him have it. Teasing is hard, but I think that you could deff. decrease it by showing that presentation to his class! I don't know if you would want to do this, but you could just show him the forum and explain that all these people care about how he is doing and about him. It may lift is self esteem :) I don't know what else I can say that hasn't been said already. So good luck I hope goes through school clearing and with kids not picking on him.
x0x
Dee

there are two things that really help me to think about when my P gets me down are these:
-this is something i use in general for when i feel "different" because of my P. i just think, everyone has problems and alot of people have it worse so im glad that i was given something i can deal with.
-also, i saw this commercial about a woman with diabetes and she said "i have diabetes, diabetes does not have me" and i think it just really helps to remind you that youre in control of this thing and it cant control your life.
kj and nemo gave good advice! good luck!

Hi :) I'm so sorry your son is having to deal with this at such a young age. My P arose when I was five, so I never attended school without it. I wish his PUVA was working better. How long has he been doing PUVA? I noramlly saw tremendous changes in a short time when I did PUVA treatments.
I agree with the others. A presentation explaining the P is wonderful. It would also allow his classmates to ask questions...we all know little ones are inquesitive. Perhaps afterwards you could ask some questions about the presentation and allow the students to answer to ensure they did understand it and to correct any misunderstandings they may have.
As for taunting and bullying, sadly it will more likely still continue. My daughter has been fortunate enough thus far to not get P. She is however a big girl, overweight and very tall for her age. There have been so many days over the years that she has come home in tears because of things people said to her. I finally sat her down and gave her some "comebacks" to say that were age appropriate for her. It did help some because I explained to her that bullies only pick at other's because they are unhappy themselves and they try to make everyone feel unhappy too. Her favorite comeback was..."if it makes you feel better about yourself to pick on me, then go ahead because I'm not bothered by it." She used this several times and she said that many of them simply looked at her with their mouths open and could think of no response, at which point she simply walked away. As she aged however, she simply tells them "when I want your opinion, I'll ask you for it" then walks away. Of course, you would need to help him find something that is his age level. Kids can be cruel and it's had for someone that has an obvious affliction. I'll be praying for you and your son. You are a wonderful mom and he is very lucky to have you. I wish the best of luck to both you and his PUVA. Have a wonderful and blessed day! :)

Hey. I think the presentation sounds really good. Makes me wish my parents had thought of that when my p showed up. Anyways, I don't know if you'd like him getting on here, but if it doesn't bother you, put him on here and let me talk to us. There are a lot of people on here that have the same thing he does, and maybe we can give him some good comebacks for whatever teasing there is. And just a question, but have you thought about finding a discussion group or play group for kids in your area with p? Maybe if he realizes that other kids have it and he's not alone, he'll feel better about it. I also wanted to say that it sounds like you are doing an awesome job with encouraging him. Keep it up... it really does help! I hope his PUVA starts working better... Ya'll are in my prayers...
~~Lysa

hey again!
longhorns' idea about getting him on here may be difficult because he is only 7 i think you said? BUT .... if he has questions or whatever, please feel free to ask them and then tell him our replies... Maybe we can each write him a little bit of inspiration from other young people with the same disease..
x0x Kim

Hey. I think the presentation sounds really good. Makes me wish my parents had thought of that when my p showed up. Anyways, I don't know if you'd like him getting on here, but if it doesn't bother you, put him on here and let me talk to us. There are a lot of people on here that have the same thing he does, and maybe we can give him some good comebacks for whatever teasing there is. And just a question, but have you thought about finding a discussion group or play group for kids in your area with p? Maybe if he realizes that other kids have it and he's not alone, he'll feel better about it. I also wanted to say that it sounds like you are doing an awesome job with encouraging him. Keep it up... it really does help! I hope his PUVA starts working better... Ya'll are in my prayers...
~~Lysa
Gabe is only 7, so I doubt he'll be a forum user. But if he's having problems, if he gets teased, if he has a bad day, I can post something and you can send replys for him to read. He would probably enjoy that!
As for support groups, and play groups... I haven't found any. He may be old enough for special camps next next summer. It would be nice if there was a p group in the area. Surely he's not the only kid! I knwo of one support group in a neighboring city, so that might be a good place to start. It's just a bit far!
Thanks to EVERYONE for your advice! School starts tomorrow! YIKES!
Drea

Drea,
Yes, having him read posts that others have made so that he can understand that he isn't the only one is a really good idea.
Good luck with school! I hope he finds great friends and a place to fit in! I'm sure he will.
x0x
Dee

Hello, I am also a mother of a 4 year old with a severe case as a matter of fact so severe that in my state West Virginia I could not get help. I am now seeking treatment for him at The University of Virginia Childrens Hospital. My child was coverd from head to toe with three different types. The doctors at the hospital worked with the drug company and to find a safe dose of Soriatane. After two months my baby was 100% clear, no one understands what it was like for me to be able to hold him and rub his back and not feel scabs as he calls them. I am so terrified that they will come back. My son has lived with this since he was 18 months it took me 2 years to finally say this is enough. Doctors in my area told me there was nothing they could do till he was 18. Soriatane and the UVA Childrens Hospital have been GOD sent. Hi everyone! I'm Drea, mom of 7 year old Gabe who has psoriasis. Some of you may recognise me from the other forums. He has it on his right hand, both feet and gets spots on his legs, back and stomach. We have had no success clearing his hand and his feet so we started PUVA about a month ago. I was hoping for faster clearing, but that's not to be. His hand still looks pretty bad, and school is starting on Monday. Yikes! Second grade.
I figure you "young folk" could be the most helpful in advice about how to help my son. Up until recently, his p hasn't been too terribly bad. But we are entering a new age, and kids are going to notice his hand, his legs.... I hate the thought that he could be teased. I had an article about "tease proofing" one time, but I can't find it now.
I'm going to put together a presentation for his class about p in hopes that it'll help the kids to accept him if they understand what it is that he has. What else can I do, though? If he is teased, is there any one thing that you think could help him not feel so bad about himself, and not feel so bad about his p? Is there anything I can really tell him that could make things a little bit easier for him? I just keep telling him that he's more than his skin and that he's still a great kid, etc. I don't know how effective that is, but I suppose at his age, what his mom says can be a pretty big deal.
Your advice is appreciated! You may PM me if you'd prefer.
Drea

Chasesmommy-
hey there, you have me sitting here going "eeeek". I am so sorry to hear that he was that bad.Though when I first read he was on Soriatane at the age of 4 scared me, but after reading what amazing work it did, it puts a smile on my face. I hope things go as well as they are, and he stays clear. It is so hard being that young and never knowing what clear skin is, but at least you know he'll have great morals.
x0x
Dee
ps, if it helps any, you seem like a great informed parent :)

hey chasesmommy,
like nemo, i was scared to hear a 4 year old on soriatane but i am sooooo glad that it is working (and safely!) for him...
it really sucks that you didnt get proper information first, but i am glad that he is clear!!
there is hope for a cure in the future.... keep hoping!!
- KJ-

Thank you so much for taking the time to respond, it has been tough finding anyone to talk to that has been through this with a young child. No one in my family has this so it was a shock. Why does soriatane scare you? Just curious I read all there is about it and to was scared but his doctor assured me that it was 100% safe now I am starting to wonder. He goes once a month to the hospital in Virginia for tests to make sure no damage is being done, do you think it is oaky? His tests have always been fine, but I get nervous about long term effects. Methotrexate was the next option if this had not worked but I was really against it. He does have some leasons coming back so please pray for him. I will post some pictures soon I have before and after pictures that the drug company is wanting to use. Chasesmommy-
hey there, you have me sitting here going "eeeek". I am so sorry to hear that he was that bad.Though when I first read he was on Soriatane at the age of 4 scared me, but after reading what amazing work it did, it puts a smile on my face. I hope things go as well as they are, and he stays clear. It is so hard being that young and never knowing what clear skin is, but at least you know he'll have great morals.
x0x
Dee
ps, if it helps any, you seem like a great informed parent :)

Thank you so much for taking the time to respond, it has been tough finding anyone to talk to that has been through this with a young child. No one in my family has this so it was a shock. Why does soriatane scare you? Just curious I read all there is about it and to was scared but his doctor assured me that it was 100% safe now I am starting to wonder. He goes once a month to the hospital in Virginia for tests to make sure no damage is being done, do you think it is oaky? His tests have always been fine, but I get nervous about long term effects. Methotrexate was the next option if this had not worked but I was really against it. He does have some leasons coming back so please pray for him. I will post some pictures soon I have before and after pictures that the drug company is wanting to use.
Chasesmommy, as a mom myself, I simply want to avoid any an all medications to control my son's p. He is 7. I am all for "better living through chemistry" so I'm not against medications. My fear is that we don't really know what effect meds have on growing brains and bodies, so I wanted to exhaust all other alternatives first.
I will use topical steroids sparingly, and he is treated three times a week with UVA which requires the topical medication psoralen (sp?). Where oral medications are concerned, I would give them to my guy as a last resort. It sounds like that is what you did, since his case was so very severe.
As moms, we can only do our homework, consider our options, and make the best decisions possible to benefit our children so that they may have a good quality of life. While my son does get spots here and there on his body, it is only his one hand and both feet that have had the stubborn p. Had it been full body coverage, I'm not sure what direction I would have gone.
I have tried EFAs (didn't work), anitoxidents with aloe juice (didn't work) and various creams, oils and lotions. I am waiting for my arrival of glyconutrients, and hope to get started this weekend! I am also using EFT on my children. I hope that calming stresses and allergies will lead to healing of the p.
I'm not sure what my next step will be if glyconutrients don't work. Tumeric, perhaps? No, just head to the nearest homeopathic doctor! They are so expensive, though! Once we have our home UVA/NBUVB hand/foot unit, doors will open since we'll be eliminating the copays and cost of gas.
I am not willing to change our diets drastically, so I just do the best I can there, reading labels, and choosing the healthiest things possible.
I'll keep you posted about the glyconutrients at Friends and Family, the P and PA forum. If they work, maybe you'll want to try them.
Drea

Thanks Drea I hope his hands and feet clear up, Chase never had it on his hands and feet everywhere else but there. I hope I am doing the right thing. want to avoid any an all medications to control my son's p. He is 7. I am all for "better living through chemistry" so I'm not against medications. My fear is that we don't really know what effect meds have on growing brains and bodies, so I wanted to exhaust all other alternatives first.
I will use topical steroids sparingly, and he is treated three times a week with UVA which requires the topical medication psoralen (sp?). Where oral medications are concerned, I would give them to my guy as a last resort. It sounds like that is what you did, since his case was so very severe.
As moms, we can only do our homework, consider our options, and make the best decisions possible to benefit our children so that they may have a good quality of life. While my son does get spots here and there on his body, it is only his one hand and both feet that have had the stubborn p. Had it been full body coverage, I'm not sure what direction I would have gone.
I have tried EFAs (didn't work), anitoxidents with aloe juice (didn't work) and various creams, oils and lotions. I am waiting for my arrival of glyconutrients, and hope to get started this weekend! I am also using EFT on my children. I hope that calming stresses and allergies will lead to healing of the p.
I'm not sure what my next step will be if glyconutrients don't work. Tumeric, perhaps? No, just head to the nearest homeopathic doctor! They are so expensive, though! Once we have our home UVA/NBUVB hand/foot unit, doors will open since we'll be eliminating the copays and cost of gas.
I am not willing to change our diets drastically, so I just do the best I can there, reading labels, and choosing the healthiest things possible.
I'll keep you posted about the glyconutrients at Friends and Family, the P and PA forum. If they work, maybe you'll want to try them.
Drea[/QUOTE]

Hi,
Photochick's mom here. Retinoid treatment is a potent therapy, but you are correct, much safer both short and long term than mtx. It sounds as though this is a very effective treatment for your son's severe disease, and I would suggest that you keep him on it. Sorriatane has a much shorter half life than its counterpart Accutaine.
Since he is being closely monitored, if he is beginning to have some lesions, you might want to consult with his doctor about the possibility of some light therapy. The combination of retinoid treatments and uvb is often highly effective. The medication makes the amount of light required for maximum benefit quite minimal.
Will post more shortly.
Regards,
PJ Leary
NCPEAS

I asked about light therapy and his doctor said that she was afraid that being so young he would not sit still long enough for the treatment....and that being so severe and young after so many years of light therapy he would likley develope carcinoma (SP?). I dunno it sounded safer than Soriatane but it worked out in the end. I may ask her as he gets older if light treatment would be an option. I am not sure but I think Soriatane is short term I dont think I can keep him on it forever, do you know? His doctor talked about taking him off of it slowly.

I asked about light therapy and his doctor said that she was afraid that being so young he would not sit still long enough for the treatment....and that being so severe and young after so many years of light therapy he would likley develope carcinoma (SP?). I dunno it sounded safer than Soriatane but it worked out in the end. I may ask her as he gets older if light treatment would be an option. I am not sure but I think Soriatane is short term I dont think I can keep him on it forever, do you know? His doctor talked about taking him off of it slowly.
I can't see a 3 year old doing light treatment! They're too busy, those little guys! Playing in the sun might help, though. If you have a private back yard, you can strip him down to his undies and let him run around outside! Turn on the hose or take him to the pool and let him get some time without sun screen. Just a few minutes depending on how fair his skin is.
As far as skin cancer, BBUVB (Broad Band) is not terribly risky, no more than sun light, I have read. I wouldn't even consider UVA for the little guy as skin cancer is a bigger risk and the use of psoralen is necessary. NBUVB (Narrow Band) is a good way to go if you consider phototherepy. But I would push that off as long as possible if I were you, just becuase he's so young.
I probably wouldn't consider phototherepy for my seven year old if it wasn't just his hand and feet. As it is now, he can sit to do the treatment, and he listens to my ipod. Next week, he can sit and watch Avatar or whatever TV show he chooses while he has treatment becuase we'll have our home unit.
Drea