Mom who needs some new ideas - new to group

[Ydancer]

Hi all, I had posted this under family and caregivers, wanted to re-post here

My 16 year old son has p that was confirmed through a biopsy last month. It started in late November but didn't tell anyone till around Christmas time. It is on his penis and he was embarssed to tell anyone. By the time we found out he had developed a staff infection that had to be cleared up before they could even find out if it was p. We were hoping to avoid a biopsy with the first two medications the Dr. gave us to try but no luck so we had the biopsy done and it confirmed it was p We changed meds again but still no progress. Last night I found four spots on his head and I don't know what to do for him. The First to meds were Alclomethasone Dipropionate 0.05% the second was Hydrocortisone 0.1% and now he is on Betamethasone 0.1% He is just not getting any better and he is so upset. He is statring to get depressed. He has never been sick in his life and has been examined my more doctors in the last 4 month then in his whole life. I am starting to see his grades slip(he is a good student) but between his being upset and his missing classes for doctors appts. the grades are dropping. I have been looking into some alternative meds but at this point just don't know what to do for him. It is good to know I'm not alone, any suggestions would be a great help.
Thanks
Mary

[MikeK]

Hi Mary,

Welcome, to the Board! :cool: Nice to meet you. I'm sorry to hear about your son's diagnsosis. :( I'm at work right now ( which means that I'm not supposed to be here :rolleyes: ) so I'm going to keep things brief. I'll post some additional thoughts ( including some specific suggestions ) when I get home. ( I'm going to a meeting so I won't be home until very late. )

Sorry for the quick response. More later.

Mike

[jennmkirby]

OH my... I cannot imagine what that biopsy must have been like. The poor kid! I don't have much advice, except that my doctor said I could use Locoid on the spots I have, you know, there. I think it's a form of hydrocortisone.

Please come on over to the complementary/alternative medicine forum... I think you'll find lots of great ideas and support.
http://www.psoriasis.org/forum/forumdisplay.php?f=13
Also try the parents and caregivers forum.
Good luck!

[WillysRash]

I too got P when I was around that age, same place...penis then scalp. Ruined my day until I figured out there was much worse that could be wrong with me...aestheics and some itching is minor compared to MS, etc. Seeing I was a dork and the only one to look at my penis at the time, I didnt care..and the scalp thing was annoying. My P progressively got worse through college....didnt have any issues with the ladies since they all liked my personality first...scabby penis second. I am 36 now, married, w/ 3 lil girls... I currently only get it all over legs and arms and torso...my penis P has gone away . I cleared up last year for the 1st time on UVB...all the topocal solutions didnt do too much. I am now on enbrel (1st shot was monday) and UVB for another month till the enbrel kicks in.

I had learned that my scalp got better when I used Temovate in conjuntion with tar shampoo. Temovate is an alcohol based med that easily went on and didnt leave a greasy mess in my hair. For my penis, I found that the less friction applied to the area helped if you get my drift (good luck explaining that one to your 16yo). You need to watch that some of the meds applied to this area do no thin the skin, not to mention other nasty side affects....a good Dr should know and explain. I used aclovate down there...didnt do too much...though it helped a little.

[swogoddess]

I would recommend that you encourage your son to visit the boards here - there is a younger persons forum that can offer support - some of these "kids" are very knowledgable and can give the perspective of someone his own age dealing this with development. A derm is a must - and maybe a shrink to deal with his depression. 16 is a hard age as is - I also was diagnosed around that time. Knowing there were others in the same boat who had experience and could offer support would have made a world of difference. Also, there are so many more options now than back then (20 years ago).

Stay supportive and let him know that you love him no matter what - that is the best you can do for him.

[kkellogg]

Hi ydancer:

I'm sorry you and your son are going through such an ordeal. This is a tough disease to manage - add 16 and genitals to that - and it's even more tough.

I know Mike will be along later with some more detail, but I wanted to give a link to a previous discussion about this subject: http://www.psoriasis.org/forum/showthread.php?t=16283&highlight=penis

I agree that it may be helpful for your son to visit the boards as well. We all know how hard it can be and the support and commeradery here is priceless.

Hang in there,

Krista

[RichJ]

hi mary,
sorry i can't help much but welcome to the p family. you have met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you.

have a good night all

richard

[Ydancer]

I'm looking forward to hearing more from everyone. His P seemd to be very painful (At least at this point). very raw most of the time. I guess I want to see a quicker response to the creams. I want to be aggressive but now reading about the cancer risk in some of the new meds I am thinking twice.
I'll keep you posted
Mary

PS
I am going to get Jordan involved in the message boards. I think it will be a great help to him to hear others stories and know he is not alone.

[sabsmako]

tanning helps for a majority of the people who have p. it's not as invasive and it's effective, so you might want to try that for awhile and see if you get any response?

[PJ Leary]

Hi ydancer,

Sorry I didn't see this sooner. I also got p when I was 16, everywhere. It is a tough disease at any age, but there are some great kids on this site who will help him.

having genital p automatically classifies you son's psoriasis as " severe ", which also means he will be eligible for more treatment options. I am a mother of two children with mild p, and so understand this disease from both perspectives.

I would encourage you to talk to the derm about the possibility of enbrel, which has been used very sucessfully for juvenile arthritis for some time now. While there may be some ancillary relief from the natural treatments, we know a lot more about the root causes of this than we did even ten years ago.

We understand that the overproduction of certain types of T cells in the blood are connected with the inflammatory nature of the symptoms, and that preventing or inhibiting that overproduction often produces relief from all symptoms. Mike will come along and post some links for you that discuss this information. Many people here are able to use the new medications, called biologics, safely and with better results than anything they have used in their lives.

Treating genital p with only topicals is hard. Other treatment options might include some UV, carefully administered under the close watch of the dermatologist.

Hoping some of that helps, Mike will be back soon with links for you.

Regards,

[MikeK]

Hi Mary,

Once again, welcome to the Board! I'm sorry to hear about Jordon's diagnosis and the issues that he had getting that diagnosis. :( Sadly horror stories about doctors (and getting diagnosed) as far too common on this Board. :( Also, let me again apologize for my hurried response this afternoon and for taking so long to get back to you. It's been one of those days. :rolleyes:

You've already been given some great advice. (I especially agree with the suggestion that Jordon get involved on the teen board. I think that it will help him cope better once he realizes that he's not alone.) Here's some addition suggestions that you might want to try:

Jordan should change his underwear several times a day. (I have it too and frequent underwear changes helps for some strange reason.) I find that the dyes and fragrances in detergent and dryer sheets, etc. tends to irritate my psoriasis and make it drier and itchier then it already is. I haven't had any laundry related problems since I switched to "free and clear" laundry products. A friend of mine, who posts here as seedoubleyou, tells me that her dermatologist recommends that people with psoriasis shouldn't use fabric softener of any kind (liquids and/or dryer sheets) on anything that touches the skin -- i.e., towels, underwear. I read somewhere that some people actually reset their washer and rinse their underwear and towels a second time. (I live in an apartment and have to use coin operated laundry equiptment so that option is available to me.) Some people avoid using bleach. (I can't use swimming pools, because the chlorine irritates and dries out my psoriasis. I do use bleach without any problems. I use half the recommended amount and I use it in every other load.) Jordan should avoid antibacterial and deoderant soaps at all costs. They tend to dry out and irritate my psoriasis. Here's a link that will eventually link you to two previous discussions about psoriasis and soap: http://www.psoriasis.org/forum/showthread.php?t=13629. In the link that Krista (kkellogg) gave you, you will see several posts that suggest using to prescription medications -- Elidel (click here (www.elidel.com) or here (http://www.rxlist.com/cgi/generic/elidel.htm) for some additional information) and Protopic (click here (www.protopic.com) or here (http://www.rxlist.com/drugs/drug-20330-Tacrolimus+Topical.aspx?drugid=20330&drugname=Tacrolimus+Topical))-- to someone who was dealing with a similar problem. Elidel is a cream and Protopic is an ointment. Both medications are approved for eczema, but are often prescribed for psoriasis. Both medications can be safely used in places like the penis. My dermatologist tells me that both medications can be safely used by children as young as two. Everyone is different, but I can tell you that I've been pleased with the results that I've seen from Protopic. The psoriasis comes back with a vengance if I skip more then a few treatments. That's the good news. The bad news is that both medications recently received black "black box" warnings from the FDA because of concerns about cancer. Since both medications are approved for eczema, here's a link to a link to the National Eczema Foundation's Statement Concerning the Use of Protopic and Elidel (http://www.nationaleczema.org/research/ProtopicAndElidelStatement.html). Some people (as is briefly mentioned in one of the posts in the link that Krista gave you) use Desitin (that's right -- the diaper rash cream) to treat psoriasis in places like the genitals. Here's a link to a previous discussion: http://www.psoriasis.org/forum/showthread.php?t=11047&highlight=Desitin. PJ recommended that you might want to consider putting Jordan on Enbrel. Enbrel is part of an exciting new class of drugs called biologics that have recently become available. (Enbrel has been around for about 12 years.) All of the biologic medications are very expensive and you might run into insurance issues. (The NPF has an insurance advocacy service that goes to bat for people who are having insurance issues.) Enbrel is given via self-injection at home. (Like an insulin shot.) Depending on the dosage, people give themselves shots once or twice a week. It has to be kept in the fridge. Like any medication, all of the biologics are not without their potential side effects. Some of these potential side effects can be quite severe. And, since these medications are fairly new (as I mentioned, Enbrel has been around for about 12 years) their long term potential side effects are not yet known. They seem to be safe. A lot of adults who post here use them. But you need to do a lot of research and ask a lot of questions before you decide to go with a biologic. (As PJ mentioned, Enbrel is approved and used as a treatment for Juvenile Rheumatoid Arthritis.) Here's a link to the NPF's discussion of biologic medications: http://www.psoriasis.org/treatment/psoriasis/biologics/. And, here's a link to some additional information about Enbrel: http://www.pdrhealth.com/drug_info/rxdrugprofiles/drugs/enb1159.shtml and http://www.rxlist.com/cgi/generic/etanercept.htm. Jenn mentioned that herdoctor said I could use Locoid on the spots I have, you know, there.Some dermatologists are more conservative then others. My dermatologist freaked when I mentioned that I was using Locoid there. (She's very conservative and had prescribed Locoid for the psoriasis on my ankles.) Locoid is a Class 5 or Lower Mid-Strength steroid. (Steroids are grouped -- by strength -- into 7 different groups or classes. Each class is assigned a number. The lower the number the stronger the steroid. (Here's a link to one of my posts from a previous discussion about steroids; it includes a copy of an older version of the NPF's Steroid Classification Chart: http://www.psoriasis.org/forum/showthread.php?p=46322&highlight=locoid#post46322.) A Class 5 steroid is towards towards the weaker end of steroid potencies. You might want to ask Jordan's dermatologist if he can use Locoid. He might agree with Jenn's derm about it being safe to use there. You mentioned that Jordan was having issues with his scalp. Here's a link to one of my posts from a previous discussion about scalp psoriasis: http://www.psoriasis.org/forum/showthread.php?p=223239&highlight=Capex+Olux#post223239. PJ also consider that youUV, carefully administered under the close watch of the dermatologistUV is short for Ultraviolet Light treatments. (Here's a link to the NPF's discussion of light treatments: http://www.psoriasis.org/treatment/psoriasis/phototherapy/.) I'm going to disagree :eek: with PJ on this one. (At least as far as the penis is concerned.) Most dermatologists warn patients who are undergoing light treatments to "protect the family jewels" and I can't help but strongly agree with that advice. Light treatments can be used to treat the scalp and other parts of the body. Light treatments can be a pain (some people have been burned by them) because patients have to go three times a week for several months for treatment. You also might run into insurance issues. (Once again the NPF will try to help you with those.) Taking a bath with a product like Aveeno Oatmeal soak (http://www.aveeno.com/detailAction.do?id=3689) (cheaper store brands may be available) or Balnetar may also help. As its name implies Balnetar is coal tar based. Coal tar has been used to treat psoriasis for many, many years. Coal tar products may not be available if you live in California. (Click here for an explanation: http://www.psorsite.com/coaltar.html.) Balnetar is available over the counter, usually by special order only. It stains and the stains can be very hard to get out. The tub has to be scrubbed immediately after use. Old towels, etc. are a must. I've never been able to find a website for Balnetar, so I'm going to give you a link to a site that sells it online. I've NEVER ordered anything from them, so I have no idea how reliable they are. I'm giving you the link because their explanation is a good one. Here's the link: http://www.dermadoctor.com/pages/branddetail72.asp?x=1&WID=%7B29749BC7%2D0B35%2D4715%2D88BC%2D8D2746DB41D 0%7D I sometimes put on some Gold Bond Powder before I go to bed.I'm sorry that this turned into such a novel. You're probably suffering from information overload. :rolleyes: I hope that it helps in some small way. Good luck. Keep us posted. Let us know if you have any questions and please don't be stranger.

Mike

[Ydancer]

I want to thank you all again for all the info and support. I think I would have been searching for days online to get this much good info. At least I feel like I know a little more about what I am talking about and I know the right questions to ask the doctor. I hate feeling like I'm just blindly following

Again
Thanks So Much
Mary

[melis]

i have only been juicing for 10 days, but you never know, you can get mr.juicer at walmart try it an take it back if it dont help. sence this p thing is all about the skin, you have to feed the skin right. i have been drinking carrots, spinage, kale, parsly celery an always add a green apple makes the taste much better. it works better then just taking vitamins or drinking v8, you have to work on reparring the skin cells. im sorry to hear your story an this will be in my head all day i will say many prayers!!!!!!!!!!!!!! good luck

[WillysRash]

Mike K...your responses to all posts on this board are awesome, well though out, and very eductional. I thank your for the time you spend responding....IMHO, people like you make this board what it is..
Willy

[nodak]

Mary,

I can't offer much more advice about the p--so many helpful people here--but I can offer help with the grades. As a high school teacher, I know that it is helpful to know what is going on with kids. I am very careful with confidentiality (and I believe most in the profession are). Even simply knowing that there are medical issues that are clouding his brain helps me be more understanding and thoughtful in my responses and day-to-day activities.

Your son may be VERY apprehensive about sharing his story, but no one needs to know where the p is.

I teach in a small school (fewer than 300 in the HS) and these kids are like my own children in so many ways. Other teachers may have experiences with p and can offer him hope or at least a safe place to vent during school hours. Contact your school's counselor--he/she is almost always a great resource for counseling services, etc.

I strongly believe that one of the worst things to do is to not say anything. Even if you just tell the counselor, principal, homeroom teacher, and/or advisor, you will likely find support for your son.

Good luck!
Leah

[om1e5ga]

Hi there, I'm new here too.

I was just browsing the thread and I noticed no one mentioned something that might help him, though I'm not sure how well it will be taken so I'll just state it as quickly and politely as I know how.

At 16 most boys have a very hard time avoiding... relieving tension, and I've found that doing so can cause it to flare up. However, I've found that using a condom while doing so helps tremdously.

Might be something you might want to try if you can find a way to breach the subject with him. Though, I know this is a very sensitive subject for mothers and sons to talk about.

Matt

[melis]

condor posted this earlier, an i thought of your son. heard vinegar was helpful, an this person tells you how vinegar helps. i have never used it, but you never know. good luck. melis

One of the things that can happen with psoriasis, is the development of an internal and external microbe growth that compounds the psoriasis.

The way I have to date, figured out to be the easiest way to determine if this is a valid problem on an individual basis. Is to see if topically, vinegar helps clear the burning, or heal the psoriasis. If it does, you have a bacterial infection that has developed.

Vinegar does 2 things: It is an anti-bacterial. It also is acidic. The particular bacteria that co-exists with psoriasis can not live with either.

If you apply vinegar topically, two times daily, and leave it on, and the result after a few days is that the psoriasis crusts over, the pain is reduced, and the psoriasis STARTS to heal, then you know you have a bacterial problem, and can start treating it internally and externally.

If you have a bacterial problem, this is one of the two biggest factors to your being uncomfortable, physically feeling terrible, and your skin not staying clear. (the second factor would be diet and allergies).

Buy a gallon of cider, or white vinegar at the grocery store and try the experiment for yourself.

If you do find this to be true, let me know, and I will give you some more info on treating this problem.


Steve

P.S. The reason vinegar works is the same reason sun exposure works-it is anti-bacterial.

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Last edited by condor : Today at 12:01 PM.