New here - please help

[Kringle]

Hi everyone,

I'm so grateful to find you because I feel so helpless. My 9-year-old daugter Leah was diagnosed two years ago. Today, those few flakes on her scalp have developed into a severe case. Legs, arms, scalp, trunk, "pelvic" area. The cremes (hydrocortisone - 17 - Valerate 0.2) and scalp lotion (diprosalic lotion) are not working and things are escalating. The pediatric dermatologist we've seen has been of little help and we wait months for appointments. I don't even know what type she has - I think its Guttate but it is more spotty than scaly. We're frustrated - I'm even crying as I write this. Leah's handling things pretty well - although it obviously bothers her. I admire her.

So, my apologies for this rant/ release but I do have two questions:

1. Does diet make any difference at all?
2. Is light therapy an option for kids???

Please help if you can - thank you for being here.

Leah's mom Chris

[MikeK]

Hi Chris!

Welcome! :cool: You've come to the right place.

I'm sorry that Leah is going through such a rough time. :( I'm 46 and have had plaque psoriasis since I was seven. I have a pretty good idea of what's she's going through.

Now to answer your questions.

Light treatments can be very effective on children. Here's a link to a thread that includes a discussion of it:
http://www.psoriasis.org/forum/showthread.php?threadid=3090. It was started by a mother from Michigan named Marielle. You might want to reach out to her. She has a now seven year old daughter, Jessica, who had a severe case of guttate psoriasis. Marielle can tell you Jessie's story better than me, but I can tell you that Jessie was helped by going for uvb light treatments.

Diet - there's one school of thought that says that changes in diet can help p. There's been several threads on the subject. Some people say that their p has improved if they eliminate certain things from their diet. These things include dairy products, yeast, red meat, coffee, alcohol, and vegetables from the nightshade family -- i.e., tomatoes, peppers, potatoes, and eggplant. Other people argue that changes in diet have no effect.

Has Leah been tested for allergies? If not, it might be worth a try to see if she does have any food allergies. It might not help her p, but then again it just might. I have a diagnosed allergy to tomatoes so I'm trying to avoid those. I haven't completely eliminated them from my diet, but I don't eat as many tomatoes or tomato based foods as I used to. I also haven't seen any change in my p.

Here's a couple of other suggestions. You mentioned that she had scalp p. Have you tried Dera-Smoothe/FS (here's a link: http://www.hillderm.com/questions/questions.htm) or Luxiq foam (here's a link: http://www.luxiq.com/WebPages/patLuxiq.html)? Derma-Smoothe is kind of messy to use. It's also peanut oil based so it CAN'T be used if you Leah has an allergy to peanuts. Some people find it helpful to alternate use of Derma-Smoothe and Luxiq.

You're obviously not happy with Leah's doctor. It might be time to start looking for another one. This board is full of stories of people who had to try more than one derm before they found one that they felt comfortable with. (Although long waits for an appointment is very common. I make mine six months in advance.)

Good luck. Hope this helps and please don't be a stranger.

Mike

[Marielle]

Welcome Chris
Like Mike said you came to the right place. I am Marielle the mother of a beautiful 7 year old with severe psoriasis. In November of 2002 she was diagnosed with Inverse and Guttate P. She was 95% covered. She started UVB sessions 3 times a week in December and now in May she is 5% covered. She has a little spots here and there but mostly on her eyelids right now. The trials of having a child like this are hard to handle. Jessie herself has been okay with it but I had a harder time with it. I am only the strong mother I am because of this site. We are a family and need each other to get through this for our children. Anytime you need to come here and talk to me I am here. I am going through everything you are and asked all the same questions. First thing I would do is find a derm that you can trust. It does not have to be a ped derm just one that you know will be right for you. Our derm is about 25 minutes away from us and we could have chose one closer but I would not trade him for the world. When ever someone told me to try this, I would ask him and he would say "Yes! lets try that." So that is what I would do first. Second try and get to UVB treatments. Or at least get her in the sun. Jessie has not had light sessions since the end of April, but she has been out in the sun. I think some of the neighbors think I am crazy letting her outside on a 53 degree sunny day with short and a t-shirt, but I am going to try everything in my power to keep Jessie from going back to 95%. I know someday it will be back full force. What we use on the scalp is Dermasmoothe and Luxiq but like Mike said be careful because of the peanut oil. I am allergic to peanuts so I was bothered by it and did not know why??? We also are using Paul Mitchel Tea Tree shampoo and that is working great. About diet....It might work for some people but our diet was great before Jessie broke out. She takes a daily vitamin, eats great (we don't eat much red meat, only if my husband kills it), and we eat a lot of the veggies that they say might affect P, like eggplant, tomatos, cukes...etc...So for us diet does not figure in unless it is something that the child could be allergic to. I hope I answered everything. Like I said above you can come to me for anything anytime. I am her for you just like all the other mom's out there. We are a very unique breed. Talk to you soon.
M

[Kringle]

Mike and Marielle

(Marielle - I posted a reply to your thread as well on Mike's suggestion - it speaks to how inspiring you and Jesse are!)

Thank you for the great advice. I have already begun the hunt for a new dermatologist. My feeling is that the pediatric derm we have may not be the psoriasis expert we're looking for because kids are less likely to have the disease. I did find someone - through a friend - and got an appointment for SEPTEMBER. The timelines for these specialists are killers up here (we're in Ottawa, Canada). So, I kept my appointment with the old one and we'll see him in a few weeks.

Thanks to you folks, and this site, I have lots of new questions to pose - including inquiring about light therapy as an option.

On her scalp - we use something called P&S shampoo which - when used properly doesn't do a terrible job combined with the salycilic adic lotion. It's the creme for legs, arms etc that doesn't seem to be doing anything.

As for diet - thank you for this info - we did try a very strict diet recommended by a naturopath - no wheat, dairy, citrus, limited proteins etc etc - but as I said in my reply to your post, I worried that we were instilling more stress than good and pulled back. Its so hard to know if your doing the right thing!

Anyways - thankyou thank you thank you. I'll pour over your posts and the others on this site. Its nice to be part of this "extended family".

Chris

[Marielle]

Chris
I know what you mean about derms and there schedules. It took me finally crying to the lady on the phone that I did not know what to do. At that time Jessie's eyes were so bad that they were swelling shut from the P. Her first derm appointment was not until January and we got her in during November because of me crying to the lady. It was a good thing because the derm said that Jessie's case was the worst that he has seen ever. I have a friend who is a doctor and she tried to become a derm because she said that derm's were the best schedules. We know that don't we? Well I am glad that you are here and welcome you with open arms. I hope everything works out for you and Leah! I looked up Ottawa Canada. You are closier to NY then Michigan. I was thinking you were further north because of your winters. Ours are awful. Well my 11 month old is getting into everything so I must get going. Talk to you soon.
M

[janetmknox]

Chris, Hi my name is Janet. Mother of 9 year old Sam with P. We are fortunate enough to have our own light box. It took alot of work but by bothering, requesting and investigating the option of purchasing our own, it was well worth it. We have had it almost 3 years now. I love its results. Sam cleared almost fully with I believe 6 dots left (she counts them) She was rated most severe in NorthWest IN. where we are from. This is why we were able to get our own. She now is flaring up again, so we are once again using it. I should worn you though, you must follow exactlly the usage your derm. (If you get your own) tells you. Sam did get burned a few times, nothing that did not go away within a few days. There is alot involved in it but we consider us pretty much pro.'s at it now. If you have any ? let me know.

We post under Sams dots. You'll find Mike and Marielle there too.

Janet

[Kringle]

Thank you Janet (and Sam).

Too bad we don't live closer - since they're girls and the same age! I have read your posts under Sam's dots and I've found them really informative.

First step for us is to even get Leah into the light therapy - you know there's a "psoriasis" clinic in our city (attached to one of the hospitals) that we were'nt even informed of! It's not in the phone book or accessible directly by the web and since none of my drs (family or derm) mentioned it, I wasn't aware of it until I heard about it from a new P friend. Apparently it offers light therapy, counselling if needed, info, etc. I'll find out if we can access it for some light therapy sessions when I see the Derm in a few weeks.
I must say - I noticed last night that even the arrival of more sunshine is helping.

Thank you soooo very much for this info though Janet. So happy that its worked so well for Sam.

Chris

[tunims]

Hi, I'm new here, but this is all exactly the info I was looking for. I'm Mary and my 8yo Brianna has had P since she was 6mos. At that time the derm we went to said he'd never seen such a severe case. She was COVERED everywhere and there was no trigger that we could remember. She just started breaking out. We live in Indiana, so we ended up at Riley Children's Hospital, where they fussed and hemmed and hawed, then prescribed over $200 of meds that didn't do a darn thing to help. I've kept her clear except for her scalp ever since then with oil baths, moisturizers, tea tree oil, and good old vaseline.

Until this spring that is, she just flared again really bad. In the last week she's gone from just on her scalp to her trunk, arms, legs, and groin , and her hair is falling out. It's never been cut, but it's only to her shoulders, and she's getting bald spots. She's also very resistent to treatment, her P used to respond, but she would fight me on treating it (fluocinonide for her scalp, it stings, oil baths.) Now that her hair is coming out and she's broken out all over again, she's just heartbroken, it's on her face for the first time and she's taken to wearing long sleeves again and covering her hair with bandanas all the time cuz she doesn't want anyone to see it.

I'm trying to find a good derm near me, but all they give me is appointments for the end of May.

The worst part is I think my husband and I might have caused this outbreak. I usually stick with the same laundry products cuz I know how important that is. And I try to double rinse her clothes. He did the shopping and bought Downy, which I never use and I didn't even think about and just used it. That's the only change I can think of and we both feel terrible.

Thank goodness I have Epsom salts in the house, I keep them for my husband, he has severely dry skin, cuz of his Crohns disease. Which is another worry, I know of the links between Crohns and P and it terrifies us both that her P might be an early indication of the Crohns. So I'll start giving her the Epsom salt baths, see if that helps while I try to get her into a derm quicker to get her some Dermasmooth and Luxiq. Her scalp is the worst. But I'm not sure other than the Epsom salt and getting sea salts, what more to do for her body. Someone mentioned tanning, I've heard of light treatments, is tanning a kind of "home remedy" in place of PUVA or UVB treatments?

As someone else said, school is hard. She hates the constant questions, she won't even go to the local swimming pool anymore. Last year her gram took her, and they were asked to leave cuz some ignoramus mistook P for lice. My son was livid about it and Bri was humiliated and in tears. That's the hardest part for us I guess, I don't know what to tell my little girl anymore, cuz Mom can't make this all better:(

Anyway, thanks for all the info, I'm off to search some more and make some more phone calls and rewash her clothes. It'll help being able to tell her after school today that she's not the only kid with it.

[Kringle]

Hi!

I haven't posted to this site in a long while because - I'm happy to report - that my daughter Leah seems to be in a bit of a remission. As an update - she was covered last Spring - back, front, arms, legs, pelvic area, scalp etc. We were successful in finding a better dermatologist that has been very agressive in treatment. We love him. No light therapy yet - but cremes, etc that have worked.

Tunims - a couple of things I've learned - please do not beat yourselves up. I really personally don't think P can be triggered to this extent by a switch in laundry detergent. Its just a cyclical thing. Also - all the current research points to P being an immune system disease. That means it can be irritated and spread because outside stimuli irritates it - but the bigger outbreaks (in my opinion) are internal in their origins. That's why so much research is going into biologics - which is a hopeful targetted drug that will 'switch" off the skin cells that have gone bezerk.

The reason we were so devastated last year at this time was because we thought "this is it - it will only get worse and worse and worse". In otherwords we didn't see any light at the end of the tunnel. Here's what worked (and I would strongly suggest that epsom salts are NOT an option as they irritate the lesions and make them worse not better). Coal tar oil in the bath - and nightly soaks. You can buy this over the counter. Moderate sun exposure. And a prescribed lotion from the derm - any number are available and in fact they do need to be switched regularly to avoid escalation - but you go until you find the one that works. As for the hair - we've tried P&S shampoo nightly - which helped. But we've also tried a lotion/oil thats rubbed into damp hair, the person wears a shower cap over night, and washed out in the am - this really works on severe flaking. Now - after having done this for weeks - we're in check and back to a regular retinue of shampoos.

So - there's hope. I realize it may get bad again - but at least knowing there's a possibility of recovery - means that we'll never be as devastated (I HOPE!) as we were. I've gone to conferences, spoken to soooo many adults who've had it since childhood - and they all say, with suppportive loving parents - they survived and learned to deal.

That's where I'm at now. But my prayers are with you and all sufferers and parents of sufferers. This dam disease sucks - that's for sure. my heart's with you. good luck.

[Kringle]

Sorry - wanted to add this - the scalp lotion I referred to that you may want to ask your doctor about is "derma-smoothe/fs". It comes with bathing caps to sleep in. Please give it a shot. I hope its not too expensive down there - we're covered by our drug plan and I'm not too sure but the dr did check to see if we had coverage. So, I imagine its not the cheapest thing on the market. But definitely worth it.



Chris

[MikeK]

Thanks for the update. I'm so glad to hear that Leah is doing well. :) Best news I've heard in a long time. :cool:


Don't be a stranger. Please stop by from time to time and let us know how both you and Leah are doing!

Mike

[MikeK]

Hi Mary,

Welcome to the Board! :cool: I'm sorry to hear that Brianna is going through such a rough time. :( You've come to a very special place. A lot of nice and helpful people post here. It's great to FINALLY be able to ask questions, vent, exchange some info, or even share some laughs with people who truly understand. :)

I'm not a parent, but I was diagnosed with plaque psoriasis a little over 40 years ago (Spring, 1964). I was 7, so I have a pretty good idea of Brianna is going through.

Chris gave you some great advice. I agree with most of it. So much so, that I'm going to expand on most of what she said.

One of the most frustrating things about psoriasis is that what works for one person may or may not work for another. To add insult to injury, a treatment that works today may suddenly stop working but will work again sometime in either the near or or distant future.

Although Brianna's latest outbreak may have been triggered by the Downy (one of the worst flares that I've ever had was triggered by laundry detergent), I can't help but wonder if Brianna has strep. Strep is a known trigger for psoriais. To further complicate things, some people have strep and don't even know it. The only sign is an outbreak of psoriasis. To make matters worse the psoriasis won't respond to treatment until the strep is taken care of. Here's some links to two very informative threads on the subject: http://www.psoriasis.org/forum/showthread.php?threadid=3074&highlight=presentation and http://www.psoriasis.org/forum/showthread.php?threadid=7538&highlight=importance+strep+test.

Chris took the words right out of my keyboard when she suggested that you try the Derma-Smooth/FS on Brianna's scalp. As Chris implied, it's very messy to use. (You have to leave it on -- covered by a shower cap -- for at least a couple of hours. Most people leave it on over night.) It stains everything, so old towels and bed linens are a must. It can be hard to get used to. It's also peanut oil based so Brianna won't be able to use it if she's allergic to peanuts. Despite theses drawbacks, Derma-Smooth/FS can be a highly effective weapon in the war against scalp psoriais. I join Chris in highly recommending it. You'll need a prescription. Here's a link for some additional information: http://www.hillderm.com/questions/questions.htm.

Another prescription product that you might want to try is Luxiq foam. (www.luxiq.com). It's used like a mousse and it's another product that you can add to your arsenal of psoriasis weapons.

Here's a couple of over the counter shampoos that you might want to try: Neutrogena T/Gel (It comes in several strengths -- here's a link: http://www.neutrogena.com/ProductsDetails.asp?ID=148), Dermarest (www.dermarest.com), MG217 (www.mg217.com) and Paul Mitchell Tea Tree Shampoo. I was told that Paul Mitchell products were only available at beauty supply stores, but I was able to find it at a New York area chain type store. It's very expensive. I was able to find a cheaper version but reading just about every bottle of shampoo in the store. I've never used them, but I've seen other tea tree shampoos at my local health food store. I find it helps to rotate brands of shampoo. I include both the Paul Mitchell product and the generic tea tree product in the rotation. Here's a link to some info about Paul Mitchell's tea tree shampoo: http://www.paulmitchell.com/site/subpage.asp?section=2,10,32,80.

Chris cautioned about the use of epson salts. I agree that you need to be careful with any treatment that you try. However, epson salts is one of those what works for one person may not work for another dilemmas. I agree that it has the potential of making things worse. However, I've also seen several posts from people who say that it helps. Use your judgment on this one.

Chris also suggested:Originally posted by Kringle
Coal tar oil in the bath - and nightly soaks. You can buy this over the counter.That's another excellent suggestion! I'm guessing that she's recommending Balnetar. (I haven't been able to find a link to a website for Balnetar, but here's a link to on online drug store that has some information about it: http://www.dermadoctor.com/pages/branddetail72.asp?x=1&WID=%7B409BDECE%2D27C8%2D4FC2%2DA068%2D03D199580FC C%7D.) Balnetar is available over the counter, but it's usually not a stock item. It has to be special ordered by the drug store. Balnetar is a coal tar based product. Coal tar has been used to treat psoriasis for many, many years. It's another product that stains. Use old towels, night clothes and bed linens and scub the tub immediately after use.

You also might want to try having Brianna take baths with Aveeno Oatmeal soak. It's very soothing and the oatmeal will help relieve the itch and soften the scales. Aveeno's website is under construction, so here's a link to Walgreen's description of it:
http://www.walgreens.com/store/product.jhtml?id=prod7172&CATID=100325&navAction=push&navCount=0.

You'll probably be hearing from Marielle. I'm sure you read her stories about her daughter Jessie. One of the things that Marielle does for Jessie is to get ahold of the NPF's "School Action Pack". She uses the information to educate Jessie's class about psoriasis. I think that it's a great suggestion!

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

Mike

[tunims]

Thanks so much everyone, you're right, just knowing someone understands does help.

We didn't do the Epsom salts yet, my husband had used all we had and I was tied down over the weekend with my 13yo daughter who's recovering from foot surgery. So we'll try them tomorrow. If it stings or bothers her, Bri will let us know LOUD and CLEAR and IMMEDIATELY, so I'm willing to take that chance this once that it might bring her some relief.

I'm glad to hear Leah is doing better Chris, gives me hope.

We do use the tea tree oil, I just get the straight oil and add a few drops to every bottle of shampoo we get, using TGel now. Costs less, lasts longer, just isn't working for her right now.

I did get her an appointment with a GP for early next week, hopefully he can get us the Dermasmoothe, I can lives with stains if it helps Bri. But I didn't know about the strep so I'll have to ask him about that.

I hadn't thought of coal tar for the bath (and my granddad was a coal miner, I grew up listening to my dad rave about coal products!) We used to use the MG217, but it also has to be ordered in advance from the pharmacy.

Thanks for all the links and all the support, I almost cried when the page came up with the replies, I've just been kind of complacent about it for so long cuz she was doing so well, and now we're back to where we were when she was a baby and I feel just as helpless.

It's spread even more since the weekend so I'm keeping her home from school tomorrow and I'm gonna call them about the Action Pack, so far her teachers have been telling her just to ignore questions and comments, and I disagree with that, just hasn't been a real issue until now when it's sooooo visible.

Bri's coated down with I can't remember what all now, my 13yo is finally off that darn foot, so I don't have to worry about her popping those stitches and I might just get some sleep before work...I hope:)

Thanks again, I'll keep you posted.

[Kringle]

Hi Tunims - My heart is with you for you and your daughter - don't let her lose hope that things will get better. Just wanted to quickly say that the coal tar oil we use is called Doaks Oil and we get it from the drugstore at our local walmart. Its not expensive.

I think for the scalp the dermasmoothe is an important thing to try. Good luck.

Thoughts and prayers from Ottawa, Canada to you and your family.

ps - when questioned at school, Leah just says "its really really dry skin". I suggested ... in a long drawn out explanation... that she could say "I have psoriasis, its a skin problem, and its not contagious." Her response was ... they'd just say "what's that" and I'd have to say "its dry skin, so I'm just cutting to the chase". It's hard - but so far we've been lucky with the kids at school. I hope that holds up. Luckily she has a few "best friends" she's had since kindergarten and they'd probably defend her to the death. So thank god for that.

[Marielle]

Okay I am here.
Sorry it took me so long to write. Been spending my breaks and lunch either chatting or checking on houses on the internet. First Welcome Mary. Sorry to hear about Bri. It is so sad when the kids break out like that. Jessie is going through a break out right now. She is off to the peds for a strep test today. It is so crazy when your 8 year old says mom I have more P spots, I need to go and get that test again. That is the only symptom she gets, more P. You have probably by now read Jessie's story and know how far we have come in the course of a year and a half.
Dermasmoothe for the hair, Protopic for the face and Dovenex for the rest of her body. Thank God that the sun is finally out. Jessie is the only kid in the neighborhood running around in shorts and a tank top in 50 degree weather.
About the School Action Pak, it is a lifesavor. I have taken it to Jessie classes both this year and last and it is great what the kids learn. They are not scared to see her and touch her. She wears her P proud. Last night we had a girl look at her at the store and Jessie looks at the girl and says that is my P. She has a big spot on her face right now, that is bothering her.
I think both Mike and Chris have led you in the right directions.
Important things are get those strep test.
Also if either you or Chris need anything I will always be here for you. I know how hard it is to see your child like this and how we need to vent sometimes also. We are mothers and P is hard on all of us.
Talk to you soon and I will write more when I have more time.
M

[tunims]

Thanks Marielle. Just being able to type it all out of my system so to speak and knowing that others truly understand is a stress reliever. You and Chris are the first parents I've met that have dealt with this. And your support and encouragement really mean alot.

Chris, We've talked and talked about the school thing, I told her to tell people "that's just the way God made my skin", just like some kids needs glasses, or have asthma, etc. But she gets defensive and just clams up. I'll look for the Doaks Oil at walmart tomorrow

I went through some of the same thing when her older brother was diagnosed with asthma, I know it's not my fault, but I can't blame EVERYTHING on my husband's lousy genes!

She's a little better tonite. Epsom salt baths helped, they didn't sting thank goodness, oatmeal lotion and TGel. She's not itching anyway.

The GP's office has me on standby, if someone cancels I can get her in quicker. The derm is harder cuz he's new to us, her old doc retired last year. But the new derm agreed today to put us on standby too.

I'm off to bed, or I won't wake up in time to coat her down tomorrow before work.