Moral Support needed for Mom of 9 yr. old P. Sufferer

[barkshull]

My son has a severe case of P. Hi s scalp is covered. His body is covered. We put cream on every night, and every night I just want to cry for Him. I lost it tonight and blamed DH for not being concerned enough. I just feel useless. I don't know how to help Him. I've been reading a lot tonight about different things to try. The Dr. gives us meds which run 20.00 each. And he has so many sores that we use it up so fast. We use Luqix (not sure if this is correct spelling) on the scalp. And T-Gel. But that doesn't help anymore. I am going to try to find the Paul Mitchell Tea tree shampoo. Is there any certain soaps that help? I have just been using our regular soap on Him. I thought I might try the Apple Cider Vinegar in the bath. I don't know if any of this will help but anything is worth a try. We just drove 15 hours to take Him to the ocean, cause some said that helps, we were there a week but I didn't notice any changes. His legs and scalp are so bad. And no one else in our family suffers from this. I just feel so bad. Well thanks for letting me vent. It's just one of those days, I think I'll go cry some more now.

[MikeK]

Hello,

Welcome! :cool: I'm sorry that both you and your son are going through such a rough time. :( You've come to the right place. A lot of very nice and helpful people post here.

I'm 46. I'm not a parent, but I was diagnosed with plaque p when I was 7 years old so I have a pretty good idea of what your son in going through. Everyone (and their p) is different so what works for one person may not work for another, but here's a couple of quick suggestions that will hopefully make your son's life a little easier.

You mentioned that Luxiq no longer works. Have you tried Derma-Smooth/FS yet? (Here's a link: http://www.hillderm.com/scalp_ps/Scalp_psoriasis.htm. (Caution: It's peanut oil based so it CAN'T be used if your son has an allergy to peanuts.) It's VERY messy to use and it can stain clothing and bed linens if you not careful. (The stains are IMPOSSIBLE to get out.) Despite these problems, it's very effective and it's one of those things that you come across and wonder how you ever lived without. I stop using it when things start to get under control.

Shampoos containing tea tree oil are also very helpful. Paul Mitchell makes one. Here's a link: http://www.paulmitchell.com/site/subpage.asp?section=2,8,26,299 I was told that I could only buy Paul Mitchell products at beauty supply stores, but I was able to find it at a New York area chain type drug store. I thought that it was on the pricey side. I was able to find a cheaper version by reading just about every bottle of shampoo in the store.

You asked about soap. My derm strongly suggests that I avoid anti-bacterial soaps. She recommended a product called Cetaphil. Here's a link: http://www.cetaphil.ca/cleansers.htm. I use the liquid version in the bathroom sink. In the shower, I rotate between Cetaphil Gentle Cleansing Bars, Dove for Sensitive Skin (Here's a link: http://www.dove.com/products/sensitive_bar.asp) and Aveeno Balancing Bar With Natural Colloidal Oatmeal (Their website is under construction, but here's a link to Walgreen's description of it: http://www.walgreens.com/store/product.jhtml?PRODID=4367&CATID=100305.) The Aveeno has a rough texture, which helps to gently loosen the scales.

Some people find that taking baths with a product like Aveeno Soothing Bath Treatment to be very helpful. (Again, their website is under construction so here's a link to drugstore.com's description of it: http://www.drugstore.com/qxp16475_333181_sespider/aveeno/soothing_bath_treatment_single_use_packets.htm.) If all else fails, you can also try Balnetar. (Here's a link to a description of it: http://www.dermadoctor.com/pages/BrandDetail72.asp?WID=%7B5F5A89C3-082D-11D7-9180-0002B330452B%7D.) It's very soothing and it does help control the scales, but it has coal tar in it and it's another product that causes stains. It can be very hard to clean the bathtub afterwards. (I only use Balnetar when things get really out of control.) (Here's a link to a recent thread on the subject: http://www.psoriasis.org/forum/showthread.php?threadid=4405&highlight=Balnetar.)

You didn't ask about laundry, but I learned the hard way that I can only use the "free and clear" version of whatever brand of detergent, fabric softener or dryer sheets that I happen to use. (I have no brand preference. I buy whatever's on sale.)

Finally, have you been using moisturizer on your son? My psoriasis is very dry and itches like crazy and I've found that using moisturizer several times a day is very helpful.

I'm sorry that this turned out to be such a novel. Let me know if you have any other questions. Good luck, hang in there and please don't be a stranger.

Mike

[Zwijndrecht]

Mike has given you such a wonderful summary of what is out there....I have little to give but some thoughts...I have tried to loose one of my kids with lyme disease attacking his brain and somehow both needed growth hormone to reach over 5 ft call so I can tell you a little about parental guilt trips....

First....of course kids don't care as much about their treatments. Try letting him treat to the level he feels like. If he wants to just take a month off and be 25% more scaly...so? Is the Queen going to fall off her rocker? Are the French going to leave Quebec? Nope, but mom feelS TERRIBLE. It comes with the territory...

So, look, boys are boys...see if you can let him go a bit...until HE wants to get the treatment improved...

Best of luck Mom, keep on coming back and talking with us...and cry for your son when you feel like it, we all do. We really do.

[barkshull]

Thank You so much for the info........
Mike, I have a couple of questions, Where do you find the Cetaphil Gentle Cleansing Bars?
I went to the site and it said places to buy it in Canada.
And the Balnetar, where do you find that?
I'm anxious to try the Derma-Smooth/FS, but it's a perscription, and the Derm. couldn't get us in till the mid of Aug.
I never thought about the laundry Det. bothering Him. But I will make the switch.
And what kind of moisturizer would you be talking about? I know He does get very itchy.Thanks again, Kim

[MikeK]

Hi Kim,

You're very welcome! I'm glad that I was able to help. :)

Most chain type drug stores (i.e., Walgreen's, CVS, Rite Aid) carry the Cetaphil Gentle Cleansing Bars and the Aveeno Balancing Bars. They're usually in the same aisle as the lotions and hand creams. (They're sometimes located near the acne products.) BJ's (similar to Costco) sometimes has them. I've seen the Aveeno Balancing Bars at my local supermarket. (Again, near the acne products.)

I usually buy the Balnetar at Rite Aid. If you can't find it, you may have to ask your pharmacist to order it for you. Instead running from store to store, get out the phone book and make a few phone calls. (Try calling both local pharmacies and the chain type stores.)

I rotate between several brands of moisturizers. I generally use Cetaphil, Eucerin Original Moisturizing Lotion (I prefer the kind the comes in the pump bottle), Aquaphor (I prefer the kind that comes in a tube) and/or Aveeno. Regardless of the kind of moisturizer you decide to buy, make sure that it's labeled "fragrance free", "non-irritating", "for sensitive skin" or words to that affect. Any dies or fragrance may irriate his skin. Especially if he has any cracked or opened lesions. (I.E., I have psoriasis on my hands and it can get very bad, very quickly. So much so, that my derm prescribed a prescription moisturizer called Lac-Hydrin. In some ways, it's much more effective then the over the counter stuff. The bad news is that stings VERY badly if there are any cracks or open lesions so I only use it when I have to.)

I hope this helps.

Let me know if you have any other questions.

Mike

[chaimFL]

Not sure what kind of derm you use, whether he/she is a specialist in psoriasis or not, but I'm gonna toss something out here that is common for kids and some adults with psoriasis..... has your son been tested for strep??? Strep infections can cause massive flares in some p sufferers and those that have had such strep flares can tell you that strep does not always have symptoms and does not always come with a sore throat. Many times if strep is the cause of a flare the flare will not go away until the strep has been treated with antibiotics. Just a thought.
Also, Luxiq is good, there is a stronger version called Olux, but it may burn too much for a 9 year old. Perhaps try Dovonex, it works slowll, but doesn't "ruin " the skin the same way the steriods do. If getting a Rx is tough for you, then you can try coal tar soaks or ointments (or both) and salycilic (spelling?) acid, along with regular sunlight exposure (DO NOT BURN!!!!!) and that can help a lot. Remember as the wonderful MikeK said Moisturize!!

[Barbi]

My daughter was diagnosed about six months ago. Moisturizers have been a great addition for my 15 year old daughter. Her Dermatologist recommended Curel, (one of the least expensive products we have used thus far...)which has worked great....also comes in a pump bottle. ( I have even used it for my wrinkles with great results). it is just hard to get her to remember to moisturize all the time. As a teen, she hates to do her regiment and always seems to run out of time. I have spent many a night putting medicine on her, while she falls asleep mid application.
We have had good results with Olux and/or Luxiq for the scalp, but it is expensive without a prescription plan....$150 USD. Also, it is harsh and can work sometimes and not others. It does burn on initial contact with broken skin, though did clear it fast. Worked well on her overall skin too....we aslo washed hair with baby shampoo for first application , followed by XSebt Plus for second shampoo. (application of steroids at night ,followed by wash in the a.m.) We treat it as it reappears, spot to spot.
So far, we have not had results with the antibiotic treatments. While on one antibiotic, she developed blood in her stools which MD said was not realted....but (coincidently or not)when we swithced antibiotics, the side effect cleared....I attributed the condition to the effect of continual antibiotics on her digestive system?!?!
Find a good dermatologist...one who understands....I have even had to go out of HMO network, pay a little extra to find the right MD. match for my daughter. Some doctors have no clue of the emotional turmoil this can create...rather they may know, but don't seem to care. One person she does know, who cares...is her mom.......through the thick and the thin of it all.......:)

[Marielle]

Welcome Kim
Marielle here. I think you have read Jessie story because you responded to one of my posting. You are in good hands here. I am usually here everyday but work has been really busy so it is hard to write and read everything. I agree with chaimFL about the strep. Get him checked for strep. Jessie gets it with no symptoms. When she is in school we have her teacher send us home a note any time someone in her class has it. Everytime Jessie has had it. So our ped knows that when I call and say that Jessie has been in contact she now just gives her meds. Her first breakout (which covered 95% of her body) was because of a strep infection. She now is doing good due to UVB treatments. She is now in the natural sun and loving it. She has a few spots on her arms and legs but mostly on her eyelids (she has inverse in those spots). We use Aveeno everything. It seems to be the products for Jessie. She uses T-Gel and Tea Tree shampoos and I have a friend that makes all of her soaps and bubble baths from goats milk. It seems to work. We already used clear and free laundry products because I have problems with scents. Also we eat a very health diet. No fast food and she takes vitamins everyday. Well I better get back to work. I only get a half hour for lunch.
Talk to you soon and welcome again. We all need each other for our kids.
M

[tiffanyfig]

Hi Kim,
My son is also 9 and also has P (diagnosed this year). So far, it is only on his scalp, and we are praying that it doesn't spread. Mine started on my scalp at about the same age and spread to the rest of my body after a few years.
Everyone has given you great advice, and I'll reiterate some of it. Use Cetaphil cleansers and lotions. Olux works well for us. Make sure you have an understanding, involved derm (they do exist). And finally, you might think about light treaments because it sounds like your son's coverage is pretty extensive.
I know your heart is breaking every time you think about this or put his meds on, but try to hang in there. Go in your bathroom, shut the door, and cry when you need to. SOMETHING is going to work for your little boy, but finding what works involves a lot of trial and error -- and frustration. You have to be patient.
I know what you're going through, and if there's anything I can do, just ask.
Tiffany

[barkshull]

Oh, it has been great to hear all of your advice. I tried to call the Derm. and ask for a perscription for the Derma-Smooth/FS , but they said they had a cancellation, and He can be seen tomorrow morning instead of the middle of Aug. In our area we only have 3 Derm. and one isn't taking new patients and the other 2 are together. So we see one of them, He is really nice but I just don't know if he specializes in P. And to see any one else we would have to go 1 1/2 hours away. I'm just praying that we can find something that will help. So I'll be trying what you all have been sugesting. I'll run it by the Derm. about the UVB treatments and see if we can set up some thing like Marielle was telling me about. I was afraid it would cost 20.00 every time.

Tiffany, Does your son ever get on the Kids and teen message board? I was showing Brandon that there were other kids that had P. and He was really excited to see that there were other kids with the same problems.

Thank you all again, I look forward to keeping in touch with you all.

Kim

[PJ Leary]

Hi Kim,

I was trying to post to yuo last night, and my pc was acting up so badly that I gave up. I usually check this forum last since there are fewer posts.

I am really glad to hear that you got him in. Please let us know what happenned.

I was going to tell you to be insistant and unrelenting when you call the derm's office. Quietly but firmly refuse to take no. Anytime the receptionist tries to put you off, describe your son's condition at the moment, and your concerns for his further demise.

I also suggest that you make arrangements with this derm to have access to him/her when needed in between appointments. Personally, I refuse to deal with one who will not do that. Your son's case is severe. Patients like him deserve and get that type of care from their derms. If they don't it is because they have a bad derm, or for lack of being pushy enough.

Good luck.

[jer836]

Hi Kim,

i have to agree with Zwijndrecht when they said let him go his own pace. I have had P my whole life (i'm 25) and so has my mother. When I was a kid she was constantly nagging me to use the creams Valisone and Devonex and every other greasy nasty things she had ever used. We had shampoos and coal tar everything, and it drove me absolutely nuts, and probably made it worse because i stressed so much about it.

As an adult, she still will try to, politely, offer some cream or ointment every time i see her, and it still drives me nuts.

I guess what i am saying is, let him decide what he can handle. If it is too much for him, which it sometimes is for all of us, let him stop using it for a bit. I almost think that the oily greasy creams were worse then the P when i was that age...

Good Luck
-Jeremy

[chaimFL]

Barkshull.......we are waiting for an update on how the derm appointment went?!?!?!?!?!?!?!?

[barkshull]

Hello Everyone,
Well we saw the Derm. He started Brandon on the Derma Smooth FS before bed. Followed by washing his hair in the morning and then applying Olux.
For His skin he put him on Triamcinolone mixed with Tar and something else but I forget, and it's at the pharmacy getting mixed right now. That is to be applied befor bed and then another cream in the morning, but I forget what that was too. I'll post later after I pick them up.
The Triamcinolone He has been using before, and it didn't help at all. But the Derm. said this will have Tar in it now so it may help.
He said the next step will be the UVB light, and that I needed to contact insurance about it, which I did and they said they need a letter from the Dr. first stating what all has been used. They said it will cost 20. every time he goes for it. Which will run 60. a week. And financially I don't think we can swing it. I asked if insurance will help to purchase one for the home, and the Derm. said you usually have to try it in the office for 6-12 weeks. And you also have to have tried oral meds. Then He tells me about all the side affects to the oral meds, and He said He doesn't want to be the one to ry them on a child. He said if Brandon was His son this is all He would be doing. I asked about Moisturizers but he actedlike they were no big deal. Then I also asked about different foods that could hinder P. and he said it has nothing to do with the foods. I about started to cry at the Derm. office but I held it back. It's just another bad day. Well I need to go pick up the meds now. Thanks for listening once again, Kim

[MikeK]

Hi Kim,

When I first read your most recent post, my first reaction was that you need to find another derm. Unfortunately, it sounds like you live in a rural area and that there aren't any other choices. :rolleyes: I'm saying this, because this is the first time that I've ever heard anyone say that you have to try the oral meds before getting a home uvb unit. Most people go on oral meds after they've exhausted all other options ... including light therapy. :eek: :mad: :(

Some people don't respond well to light therapy so most derms (and probably most insurance companies) want you to go to a clinic or doctor's office for teatment before getting a home unit. (Some people have been burned by light treatment so the cure can be worse than the disease!) Under the circumstances, I think that you should politely, but firmly, work towards convincing your derm that a home unit is the way to go. The NPF has an insurance advocacy service which can help advocate on your behalf. Here's a link that describes the service: http://www.psoriasis.org/medical/advocacy/. The NPF's telephone number is: (800) 723-9166 and here's a link to all of their contact information: http://www.psoriasis.org/contact/. (F.Y.I., the NPF is in the Pacific time zone.) In the meantime, have Brandon go out and play in the sun. Sunlight is usually very helpful to people with psoriasis. Just make sure that he doesn't burn! I know from personal experience that a sunburn on top of p is not fun. :eek:

My derm is a big advocate of moisturizer. Her standard line is "moisturize, moisturize, moisturize". As I mentioned in my previous post, I find moisturizing several times a day to be very helpful.

You asked about diet. That's a frequent topic of discussion on the general discussion board. :) Most people report that changes in diet have no impact on their p. Some people report that they've been helped by changing their diet. Some of the foods that cause problems for some people include: yeast, alcohol, foods from the nightshade family (i.e. tomatoes, white potatoes, eggplant.) Here's a link that, among other things, includes a discussion of p and diet: http://www.psoriasis.org/forum/showthread.php?threadid=3404. Many of the discussions of p and food focus on a book called Healing Psoriasis by a chiropractor named John Pagano. I haven't read it, but I understand that he recommends changes in diet for people with p. Here's a link to one of many threads on the subject: http://www.psoriasis.org/forum/showthread.php?threadid=3489&highlight=Pagano. You might want to try eliminating certain foods (like tomatoes) from Brandon's diet and seeing what happens. You can also have him tested for allergies to see if he allergic to certain foods.

The good news is that the Olux should help. (Here's a link to their website: http://www.olux.com/WebPages/about.html.) The bad news is that Olux burns ... especially if there's any cracks or open lesions. The Derma-Smooth/FS should also help. It's very messy to use and hard to get used to, but it does work.

Hang in there. I know how hard and frustrating this is for you and your family (and especially for Brandon), but things will get better.

Mike

[PJ Leary]

Hi Honey,

I am so sorry to hear you are feeling frustrated and sad about the whole thing. If I were you right now, I would feel that way too.

As usual, Mike is right on the money. In 27 years of having p, and as a 20+ year veteran of light treatment, I haven't ever heard a derm say systemic meds before lights. In fact, I haven't heard often of a derm who will even suggest systemics unless there exists a life threatening situation.

It is true that most insurance companies require a course of uv treatment in order to approve a home unit. If I were you, I might ask your derm if you can work out a payment arrangement. Perhaps 12 weeks at 3x weekly paid over a year in monthly installments? That would come to about $60.00/ month. I would think he would be hard pressed to decline under the circumstances.

Mike is also correct that moisturising is critical. And that Olux burns like crazy for several minutes. Personally, I switch around the brands among a few favorites like Aveeno, Curel, Lubriderm, and AlphaKeri. I always keep a big tub of Eucerin or Aquaphor in the house too.

In my experience, many times insurance companies will deny coverage for something initially because most folks don't fight back. Learn the appeal process required by your company, then employ it! Many will back down right away. Others require a bit more hasseling. It is worth it to get the right treatment. Mike is right in that NPF will help you with that.

Good luck. Keep us all posted.

[tiffanyfig]

I keep thinking about you two. How are things with Brandon? Have you gotten anywhere with the derm? Everyone is right about the systemic meds. I've done every light treatment there is and just went to my first "big drug" (Enbrel) a few months ago. Light treatments and topicals have kept me fairly under control for more than 25 years!

Yes, Jack does read the messages on the youth board sometimes and it helps him I think. Some of the messages make him laugh, and it's great to hear him laugh about this. I saw Brandon's picture on the other board. What a cute kid! Does he play soccer, too? It sounds like our boys have a lot in common.

[Marielle]

Kim
You poor thing. It is one thing to have a child that is covered and complaining but to also have a derm that you don't agree with and an insurance company that is not there for you. I think that they should look into the co-pay issue. My insurance company is not the greatest but they did cover the co-pays for the UVB treatments. Also our derm did not give Jessie oral meds before the UVB. She was only on the other meds (creams) a month before he tried UVB. I do agree with Mike. Try the UVB treatments at the doctors office and then see about a home unit. We are talking to our insurance company right now about getting a home unit. I found a used one for $200.00 and might get it myself if Jessie's derm agrees that this is a good one and helps us out on setting it up. Keep your head up, you will find something that will work it just takes time and strength. Hope to hear from you soon.
M

[coolton]

I am new here but had to reply to your post. I was diagonsed with psoriasis when I was 9 years old(after several weeks of doctors speculating). My entire body was completely covered. One thing I can tell you is that most doctor's really don't have a clue as to what works or how emotionally scarred a child can become after suffering from this disease. I personally used tar soap ..it smells bad but It really help to clear up most of the discoloration I had after the lesions cleared. Fortunately, I haven't had a flair up like it since. What I want to say to all of you parents out there, that the most important thing you can do for your child is loved them and try to protect them from the verbal and mental abuse they will suffer at the hands of peers and sometimes even their teachers.

[Elisita]

Hi, My name is Elisa and I am from Honduras, C.A.
My 11 year-old son, Julio, has been with psoriasis for about 2 years now. First it was only the inverse type, but know he has like a rash and dry spots in his chest and legs,but not scalps, so I think he also has Guttate?. I took him to the doctor and he only told me it was the same thing, and to keep using moisturizers. Reading all of you have open my eyes, there are so many other things I should be doing!! Since in my country sometimes is difficult to get certain products, I would apreciate you give me a list of over the counter products that I could get in USA, like shampoo, soap, moisturizers. Is that coal tar something that you think could work out for him and that I could get without prescription?

Thanks again and please forgive my terrible grammar.:)

[MikeK]

Originally posted by Elisita
I would apreciate you give me a list of over the counter products that I could get in USA, like shampoo, soap, moisturizers. Is that coal tar something that you think could work out for him and that I could get without prescription?

Thanks again and please forgive my terrible grammar.:)

Hi Elisa,

I'm sorry that Julio is going through such a rough time. :( The good news is, as you've already discovered, this a great place to exchange information, ask question, and even cry on someone's shoulder when you need to. Welcome to the Board! :cool:

Everyone and there psoriasis is different and what works for one person may not work for another, but here's a list of some products that are available of the counter, in just about any drug store, here in the US that should hopefully give Julio some relief:

moisturizers Eucerin Original Moisturizing Lotion (here's a link (English): http://www.eucerinus.com/ (Spanish): http://www.eucerin-la.com/, Aveeno Daily Moisturizing Lotion (no website), and Cetaphil (here's a link: http://www.cetaphil.com/product_information/product_information.cfm)

soap: Aveeno makes both bar soap and body wash. The bar soap has oatmeal in it. It has a rough texture, which helps gently remove the scales. Cetaphil makes both bar soap and liquid soap.

shampoo and Coal Tar: Coal Tar has been used to treat psoriasis for many, many years. Coal Tar shampoos come in several different strengths, several of which are available without a prescription. The one that I suggest that you should try is made by MG217. (Here's a link: www.mg217.com) MG217 also makes an ointment that you can use on Julio's skin. (MG217 comes in two versions one with coal tar and one with salicylic acid. Salicylic acid is used to remove the scales that are caused by psoriasis.)

Dermarest makes lotions and shampoos with Salicylic acid in them. They are also available over the counter and is something else that you might want to try.
(Here's a link: http://dermarest.com/prod.html)

I can usually find any of these products in my local drug stores. They're usually in the same aisle as the lotions and hand creams.

I hope this helps. Good luck. Let us know how Julio is doing and please don't be a stranger.

Mike

P.S. No need to apologize. You're grammer is fine! :)

[mlf44]

I am so sorry you are having such a difficult time. You said you live about a 1 1/2 hour drive from other docs, is there a community hospital in that area? If so contact them and see if they have a dermotology clinic that you and your son get into, it's worth the drive and you and your son are worth the trip. A lot of thoses hospitals can offer medicines at a sliding scale especially when you have this condition. I agree with Mike and others here, I also changed bed sheets, I get the very soft ones that way I itch less at night and purfume free laundry soap and dryer sheets. I use Vasolene bath crystals with mosturizer in it to bathe and it is really nice.
Look into tanning salons in your area too, this can help. Get into to talk to a family counselor too, this will help you and your son cope. I know how he feels, and I know how it must feel for you being a mom. When I was his age I got really isolated and that in turn made me mad and I acted out my anger, don't let that happen to you. I didn't do anything bad I was just angry because I had this condition.
Talk to anyone here and maybe someone here lives near you and can give you names of there doc that you can look up too.
Good luck and keep fighting.
Mary Lou

[bishopj]

I just read nearly all the messages. Looks like this thead as kind of slowed down. I have a 6 year old diagnosed 2 months ago. While waiting for my derm appointment, I ordered a cream from Canada called Biolanyn. It pretty much cleared up his elbows and knees. But today I think he's getting a new patch on his upper buttock. I'm just devestated. Has any one else tried this product? It is at www.biolanyn.com . I need some talk, I'm pretty depressed. Austin is not near as bad as the children above, but I'm scared about how bad he might get. Appt. with the derm is tomorrow.
Thanks, Jane

[Marielle]

Jane
Welcome to our P family. I hope this finds you okay after Austins derm appointment. How did it go? I have a 7 year old daughter, Jessie, with P. She was diagnosied on November 14, 2002. She was covered from head to foot. We have not tried the biolanyn. I will only use stuff that the derm prescribes for Jessie. There are too many things out there that could be harmful to children with P. Jessie cleared with UVB light sessions. That was after trying about 7 different meds. Don't give up hope. Try and find a good derm and come to this site for answers. I made sure I went into Jessie's derm appointments with a fresh lot of questions to let him know that I was researching everything out there for P. You have come to the right place. I think MikeK and PJ will probably respond also. These are the two with the support and knowledge to follow. If you ever need time to vent or just talk to someone who has been there recently, I am here for you anytime. I know what it is like to want to lock yourself in a room and cry for your beautiful child. We just have to be strong for each other. Where are you located? I am in Western Michigan. Well my break is up. Please keep us posted on Austin. Talk to you soon.
M

[bishopj]

Hi Marielle, Thanks for your reply. I felt kind of ashamed of complaining when I read your story. Austin is no where near covered. Right now it's mainly just his elbows, but of course I'm nervous. The derm appointment went well. She looked at the Biolanyn and pronounced it completely safe and said if it's working keep right on using it. I'm in the Kansas City, Missouri area. I just keep looking Austin over and being suspecious of every little spot.

Has the UV treatment kept Jessica clear? I very much hope so. I just admire all of you so much for handling this as you do. Nothing is as bad as having your child hurting. If course, we'd much rather take it on ourselves if we could.

It seems to me that the minute you mention the p work to docs they just kind of shut down. This derm actually said she was unwilling to call this p yet. Could be she's trying to do us a favor by not labeling him for insurance purposes. I don't know. Just prayer and one day at a time, I guess. I asked her about the new Biologics drugs. She and her partner are supposed to be the very best in the Kansas City area. She said they are only working so-so and she is unimpressed so far. Too bad.

Later

Jane

[MikeK]

Hi Jane,

First let me extend a hearty welcome to our little family. :cool: I'm sorry to hear that you suspect that your grandson, Austin, may have psoriasis. :(

I'm not a parent, but I was first diagnosed with plaque psoriasis way back in the Spring of 1964 (I was 7) so I have a pretty good idea of what Austin is going through. I hope you're wrong, but let's assume that Austin has psoriasis. Based upon your description, it sounds like he has a mild form of the disease. That's a good thing. Everyone and their p is different and Austin's p may just confine itself to his elbows. Let's hope so. I've read here that some people who get it as kids outgrow it by the time that they become adults. Mine didn't, but let's hope and pray that he's one of the lucky ones.

As I mentioned about, I was first diagnosed when I was 7. I'll be 47 next month. For most of the 39 plus years that I've had p, it confined itself mainly to my legs. Every onces in a while a new patch would appear somewhere on my body, but those patches would disappear as quicky and mysteriously as they appeared. :rolleyes: The bad news is that my p started to spread once I hit 40 and new patches no longer disappear.

Now turning back to Austin for a moment. If he's still having problems with his skin, you can ask the doctor to perform a biopsy. A biopsy sounds scary because it's usually associated with the cancer, but biopsies can be used to diagnose psoriasis.

I'm not familiar with Biolanyn. I'm always more than a little suspicious of any product that's only sold on line, but if it seems to be working and the doctors don't have any problem with it, then I say go for it.

You mentioned that you asked the derm about biologics. I have no experience with them. My p is actually very mild. They don't usually prescribe biologics to someone with a mild form of the disease. That's because they're very expensive and have only been available for a short period of time. Like any medication, they're not without potential side effects (some of which may not be known because the biologics are so new), so most doctors (and insurance companies) would probably prefer not to risk prescribing a biologic medication to someone (especially a child) who has a mild form of the disease.

I hope this helps. Please let me know if you have any questions.

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

Mike

[bishopj]

Hi Mike, Thanks for your very helpful and encouraging response.
Sometimes when you get on the board you run into a lot of horror stories and start imagining the worst. It was good to hear from someone who has dealt with p for a long time and is doing well.
When this first came up I thought Austin's life was over! I was extremely upset when I started researching. I've calmed down considerably and assured myself that his life in indeed NOT over.
He's a little motocross racer. He's ridden a motorcycle since he was 3. His dad rides too and we even make videos about racing.
If you want to, check us out at www.hammerdownvideo.com

Thanks for caring enough to share with me. It really did help

Jane

[Marielle]

Hey Jane
How are you doing? First thing...Never be ashamed of complaining. That is why we are here. We need this support otherwise we will expolde. I see that MikeK got in touch with you. I knew he would. He was one of my backbones when Jessie was at her worse. She has been off UVB since May. We have been using the natural sunlight to help until recently. She is showing some signs of it coming on again. I am putting on more meds again. Is Austin the first one in the family with it? Jessie is the first for us. Well I better get going the baby is needing my attention. I worked 10 hours today, had Girl Scouts and now am here. So I better get going.
Talk to you soon.
M
:)

[bishopj]

Mike and Merielle,

I'm VERY low. Austin's elbows are not too bad, but now he has a rash on his buttocks that looks different. It's very angry looking and painful. I've been putting Locoid on it. Not really helping.
Then this morning when I was getting him ready for school, I noticed that on his cheek right beside his nose and under his eye he has some little bumps that look like the beginning of something. (Plaque) I was so upset, I left the room. I got hot and thought I would faint. Now I'm thinking the worst. How did Jessica's come on? All at once or in stages?I can tell you, I'm pretty mad at God right now.

Jane

[MikeK]

Hi Jane,

I'm sorry to hear that things have taken a turn for the worse. :( It sounds like another trip back to the derm is the first order of the day. Having him see an allergist after you see a derm might also be a good idea. He could be having an allergic reaction to something. Have you changed your detergent lately? Is he using a new soap in the shower? What about a new food? Did he visit a friend with a pet? It could be just about anything. It could even be an easily treated rash. (Fingers and toes crossed.)

In the summer of 2002, I broke out with what I was sure was guttate p on my chest and face. (I have mostly plaque p everywhere eise.) It looked just like the pics of guttate that are on this site: click here for pic of guttate (http://www.psoriasis.org/facts/psoriasis/guttate.php) and it itched, burned and flaked like the rest of my p. To say that I was devistated about the fact that it spread to my face would be an understatement. The only meds that I had on hand were Ultravate and Dononex neither of which can be used on the face. I almost used the Dovonex on my chest but I decided to check with my derm first. She insisted that I come in because of my face. She diagnosed it as some sort of rash. A biopsy confirmed her diagnosis. It went away after a two work course of topical Rx antibiotics.

If it turns out to be face p, then ask your derm for either Protopic (www.protopic.com sorry about the pop-up) or Elidel (www.elidel.com) both of which are approved for Eczema, but are often prescribed for p. I use Protopic for the p in my ears, underarms and groin area and like it very much. It actually turned out to be my wonder drug for my ears.

I know that it's hard but hang in there. We'll help you get through this.

Mike

[bishopj]

Hi Mike, Thanks for your quick reply. I feel marginally better today. The Locoid finally seems to be helping. As for his cheek, I could be wrong. I started putting Biolanyn on it. It looks ok. I mean no one would notice anything unless someone pointed it out. Austin's dad says I'm extremely paranoid and it's nothing. Could be he's right and I hope he is. I'm a natural-born worrier. I look at every bump or red spot as the enemy. I'm beginning to think you can find some form of p that looks like everything! Just like your rash you were convinced was guttate. Thanks too for the meds suggestions. I'll get back to you. Jane

[Marielle]

Hello Jane
Don't give up! Mike is right. Get him to a derm now. Jessie started out with a spot by her mouth. The ped told us that it was a reaction to her saliva touching her skin. Then a couple months later her belly button was completely full with a rash. You could not even tell she had a belly button. The ped told us it was nothing and gave us some cream. The ped also told us that it was not related to the spot on her face that was still there. So one November night Jessie wakes up with 3 spots on her neck. We thought they were bug bites....Well within 2 days the spots spread to her full upper torso. Took her to the ped and once again they could not figure it out. She ended up seeing 3 peds that day and a family doc. They called it something stupid and said that the face, belly button and this new rash were all totally different rashes. Long story short....We finally got her into a derm after 5 months (after the spot on her face showed up) with her completely covered. The problem that the peds had was that they did not know that children could get P. Also to get into the derm it took me crying on the phone to the nurse to get her in. Her appointment was not for another 2 months. Could you imagine what that would have been like? Just keep your chin up. You will be able to help him. Have you tried the Aveeno Oatmeal Baths yet? That seems to help Jessie with the pain and itching. The Potopic that Mike mentioned is a good med. I use it on Jessie's eyelids, ears and under her arms. It almost sounds like he has Inverse P along with whatever they diagnosed him with. Jessie has Inverse and Guttate. I hope things get better. Just remember you can always come here. I will also give you my phone number if you need to talk. Just PM me and I will send it to you. I have talked to a few moms and that seems to help with everything. You should also have his doc give him a strep test. It sounds like a strep breakout. Talk to you soon.
M

[Marielle]

Hey Jane
I started that one on break and just finished it up and saw that you posted again. You are right about worrying. I do also. But sometimes it is good to worry. My 17 month old started to get a rash and I thought oh no not another one. It turned out that she has Eczema. I would freak everytime she got a daiper rash or cradle cap that she had P like her sister. So it is in our nature to worry. I hope all is well.
Talk to you soon.
M

[MikeK]

please have Austin tested for strep. (Insist on a culture. The so-called "quick test" isn't alway reliable.) Strep is a known trigger for p and some people can have strep without having any of the "typical" strep symptoms -- i.e. a sore throat or a fever. The only sign that they have strep is an outbreak of p! :eek: To add insult to injury, the p won't respond to treatment until the strep is taken care of. :rolleyes: Here's a link to a very informative thread on the subject: http://www.psoriasis.org/forum/showthread.php?threadid=3074&highlight=presentation+and+strep.

Talk to you later,

Mike

[itzlisah]

hi everyone! Hope everyone is well were all okay here, i got andrews hair thinned out he only has a couple of red spots for right now before his big outbreak comes on his scalp again this year rumor has it when the hair is thinner its not so bad so guess well see what happens!!! i have to reformat my puter and have it worked on so i wont be in for a bit once again lol marielle hope your daughter (right) is doing well and everyone else children are doin well got to go take care everyone just wanted to touch base thanks again lisa

[bishopj]

Mike and Marielle, You guys are so helpful. a lot has happened since I last communicated. For one thing Austin got a horrible case of strep. Had to get a shot and zithromax. That caused him to get scarlatina(sp) on the insides of his thighs. Of course, I was convinced his p was spreading like crazy. Also the problem of the sore spots on his buttocks - the derm has no idea what it is! But we're going to try some new meds. How is Jessica doing at this point?
Mike, do you keep your p under control pretty well, or does it still bug you a lot?
Thanks you two. Jane
;)

Oh yeah I told the derm what you said about strep. He said to go back in ten days and have them culture him again - not the fast kind. So we'll see.

[Marielle]

Jane
Hello! Thank you so much for the update on Austin. Keep watching that strep. If he is anything like my Jessie he will get it a lot and without any symptoms. Jessie is doing good. She has a fe spots showing up on her face and eyelid is getting worse but ear is better and chest is clear. I blame it on the weather getting cold. Well keep us updated.
Talk to you soon.
M

[MikeK]

Hi Jane,

Thanks for the update. I agree with Marielle, keep an eye on that strep! Strep is just about every p patient's worse nightmare! You asked:Originally posted by bishopj
Mike, do you keep your p under control pretty well, or does it still bug you a lot? It all depends on the season. (Sigh!) It's always worse as soon as the weather starts to get cold and this year is proving to be no exception. The good news is that my hands are in pretty good shape this week. They were starting to get bad again, at the beginning of the month.

Hope you nip Austin's problems in the bud. Keep us posted and I'll talk to you again soon.

Mike

[Marielle]

Hey Mike
Saw your picture. It looks just like what I pictured. Chaim has talked me into posting a photo of myself. So mine with be up soon.
M

[MikeK]

Thanks, Marielle. I'm glad that I finally made it to the gallery. Can't wait to see yours. I'll talk to you soon.

Mike

[bishopj]

Hi all, especially Marielle and Mike,

I just checked back in to look up all the stuff MIke said about strep. Austin has been clear, but then he got sick over Christmas with his usual horrible sore throat, cough and fever. My husband took him to the dr. and demanded to see the doctor instead of the usual nurse practicioners. These well-meaning women don't know spit about P. Anyway, the dr completely agreed about the strep connection and gave austin a round of antibiotics with several refills on it. Also he's growing a culture and if that comes back positive, he is going to give Austin antibotic shots that last a month. He says the kid's tonsils are horrible and need to come out. Don't know if I'm ready for that, but I know it needs to be done. You guys are so good to reply and help people out. Saw Jessie's pic. She's a doll.
Austin has p in new places now: the inside of his arm and on the top of his hands. He's been SO sice and his Christmas has pretty much destroyed. I'm hopeful about getting rid of the strep.
Thanks to everyone for all the great info.

Jane

[Marielle]

Jane
I am glad that you went the extra mile for Austin. Jessie gets strep often and it is really hard to deal with. Our derm is going to take out Jessie tonsils as the "next course of action." I hope that helps. Keep us updated with Austins progress. Talk to you later.
M

[MikeK]

Hi Jane,

Welcome back! :cool: I'm sorry to hear that Austin was sick over Christmas. :( Poor kid. I hope that he's feeling better. I'm glad that the Dr. agreed about the strep and is agressively going to treat it. Good for him!

The good news is that some people say that having their tonsils taken out has helped their psoriasis. :) The bad news is that it doensn't work for everyone. :( Here's some links to a couple of other threads on the subject:

http://www.psoriasis.org/forum/showthread.php?threadid=3573&highlight=tonsils

http://www.psoriasis.org/forum/showthread.php?threadid=5669&highlight=tonsils

http://www.psoriasis.org/forum/showthread.php?threadid=2956&highlight=tonsils

Keep us posted!

My best wishes for a happy, healthy New Year.

Mike

[bishopj]

Mike, you were exactly right. Austin is a strep carrier. After doing a culture the dr's office called today and said for him to take antibiotics for 2 months! If it hadn't been for you we wouldn't have known, because I'm the one who brought it up to the derm. So THANK YOU, THANK YOU! As for his tonsils, they need to go, p or not. Happy New Year and bless you for donating your time, experience and knowledge to this board to to those of us who need it so badly. You are a sweetheart! Jane :D

[MikeK]

Glad I was able to help. :cool:

Mike

[blainelee]

Originally posted by barkshull
My son has a severe case of P. Hi s scalp is covered. His body is covered. We put cream on every night, and every night I just want to cry for Him. I lost it tonight and blamed DH for not being concerned enough. I just feel useless. I don't know how to help Him. I've been reading a lot tonight about different things to try. The Dr. gives us meds which run 20.00 each. And he has so many sores that we use it up so fast. We use Luqix (not sure if this is correct spelling) on the scalp. And T-Gel. But that doesn't help anymore. I am going to try to find the Paul Mitchell Tea tree shampoo. Is there any certain soaps that help? I have just been using our regular soap on Him. I thought I might try the Apple Cider Vinegar in the bath. I don't know if any of this will help but anything is worth a try. We just drove 15 hours to take Him to the ocean, cause some said that helps, we were there a week but I didn't notice any changes. His legs and scalp are so bad. And no one else in our family suffers from this. I just feel so bad. Well thanks for letting me vent. It's just one of those days, I think I'll go cry some more now.

[blainelee]

m.y son is 9 and has very sever psoriasis and i cry for him to he

[blainelee]

Originally posted by blainelee
m.y son is 9 and has very sever psoriasis and i cry for him to he

[blainelee]

my name is heather and i am just learning how to use this computer so bear with me.

[MikeK]

Hi Heather,

Welcome to the Board. :cool: Take all the time you need to tell us your story and learn how to use this site! Do you have psoriasis? Does one of your children have it? We'll be more than happy to help you in any way that we can.

Mike

[GAGEMAN]

Hi,

Im sorry you and your son are going through a rough time right now. I too was 9 years old when I was diagnoised. I also have a 9 year old son (who does not have p now and hope he never does no the pain that goes with this disease). I can tell you that there is so much more help and medications out there then there was 21 years ago.

Maybe you could be able to join the NPF function in August so your son could be able to meet other kids just like him. I heard that the children have a good experience.

Donna :)