hi everyone

[dipsy]

my name is maria and i have a 12 yr old daughter sara who has had p since she was 7. we live in scotland. i read through some of the threads and can relate to them all.after all this time you would think i would be able to cope with the emotional rollercoaster of living with p but it does not get any easier. sara has p on scalp, ears, b,b(belly button)elbows, knees,and worst of all on her feet. at the moment her p is very badly flared and the cuts on her feet have went infected so she is on an antibiotic to clear the infection, she is also getting uvb 3 times a week. this is her 3 course of uvb and we are hoping it will clear the p or at least heal it a bit. saras feet get that bad that she can hardly walk she has had quite a lot of time of school, and we dont really get a lot of support from the school i realy dont think they understand what she is going through although she copes better than me sometimes although she has her moments but i really cant blame her, i dont think i could cope with the pain like she does then she has to cope with all the remarks she gets from other people, and kids can be so nasty. we have a forum here in uk but its mostly people with p they dont have a parent caregiver page, i can relate better to you all might suggest it though god bless maria

[janetmknox]

Maria, Hi my name is Janet, mother of Sam's dots. Sam is 9 yrs. old. I am sorry to here about Sara. I know kids can be crule, but like I tell Sam all the time, you will know who your true friends are. They like you for who you are inside, not outside. It sounds like Sara has been through alot. I am sorry to here. Sam is also receiving light therapy. Luckly we have our own unit at home. How is the weather there. We are still cold, which does not help P. Hope Sara does well with the light.
If you need to talk we are here for you.

Janet

[MikeK]

Hi Maria,

Welcome! :) I'm sorry to hear that Sara is having such a rough time. :( I'm not a parent, but I'm 46 and have had p since I was 7, so I know exactly what Sara is growing through. You've come to the right place. Your fellow "p-moms" know exactly what you're going through. This place is a wonderful resource and an on-line support network. We're all in this together. Good luck and please don't be a stranger.

Mike

[Marielle]

Welcome Maria
Marielle here. A P mom of a 7 year old who started out with 95% coverage to 5% because of UVB sessions. I feel for Sara and hope everything starts to get better. I think these kids are very strong to go through what they are going through. One thing we have decided is that we are going to stay in the same area. Like you said they need to know who there true friends are. By staying in the same area she is going to grow up with the same kids. Is Sara using a UVB foot booth for her feet? I would see if you can get a secondary foot treatment. Jessie did not have to have the foot sessions but I do know of a couple of other people at the derm's office that did both the big unit for all over and a second shot of the foot booth. It would be cool to ask. Tell Sara that she is not alone. Also as you can see you are not alone. This is our P family and you can come here anytime to vent and cry. We all do. Well I better get going. Welcome and if you need anything feel free to ask.
M

[dipsy]

hi everyone thanks very much for making me feel welcome. sara has got a few close friends,and she stayes over at one friends house quite often. when her p is bad she tends to keep it covered up and wont wear short sleeves much.sara goes to our local hospital derm day care unit for her treatment, they are using a large booth i dont think the have a foot booth because they stand sara on a box in the unit so the light can get to her feet better, but a foot booth would be a better idea. the weather here has been very wet the past few weeks not to cold, but this weekend we have had two glorious day so hopfully it will stay like this for a few weeks and sara will get the benefit. sara loves horses and goes to the stables every weekend to help out. i am hoping this will biuld up her confidence,and working outside in the nice weather might help her p. janet you said you have a unit at home that would be nice cause i have to run to the clinic three times a week with sara, but my derm doctor says sara can only have uvb over a 12 week period then she has to have a gap of a year before she can get anymore uvb treatments this is her third sesion her first was in 2001 the first time her p totaly went for about 5 months what a diffrent girl she was, the second time she did not get completly clear but it was still a good result. we are hoping and praying that we get a good result this time i will keep you all posted god bless thank you all again maria

[Marielle]

Maria
Good Morning or whatever it is there. I can not believe that your derm will only do 12 weeks and then have a gap of a year? Jessie was going three times a week for 5 months. We might start back up in October depending on how she is doing. Right now we have her under control. So that is 15 weeks that she went. One of the reason we stopped was because our insurance would not cover anymore. That just boggles my mind. I wish you could get or see a foot booth. I think that would help Sara a ton. We finally got some sun with warmth, sorta. So I am hoping our weather is getting better. Talk to you soon.
M

[dipsy]

i dont know why they only do 12 weeks with a year gap, i will have to ask on wed when sara goes back for her next sesion.was there today and saras p is starting to improve the p on her bb is almost gone just see a mark where it was, her elbows and knees are much better, her feet are taking a bit longer but the cuts are going and they are not so painfull. she had a shower last night and its the first time in ages she has not screamed with pain( when the p is bad the water takes the top lair of skin of and it opens up all the cuts very painful) we are so happy i just hope it continues and she gets a break from the p for a few months. :) :) talk to you soon maria

[PJ Leary]

Welcome Maria, and Hi Marielle,

I am both a psor and a psormom, lol. Fortunately the two children of mine who have bouts with p only get episodes when they have a strep infection. When the nfection is treated, the p clears up totally right away.

I am wondering which kind of UVB you ladies are discussing. I have a suspicion that one is using Narrow Band ( the newer kind ), and the other of you Broad Band. There are differences in their uses.

Regards,

PJ Leary

PS Welcome to the board, Maria:cool:

[Marielle]

PJ
Jessie was using Narrow Bands as far as I know. It was a huge machine at the doctors office. She started out at 19 seconds and by the end was up to 3 minutes. I asked the derm if there was a time constraint and he said that until she is better he recommends it. When she started clearing up really good he told us that he was going to stop the UVB sessions in May because the natural sun would take care of the rest. She has been out in the sun ever since. What is weird is our insurance stopped covering it on May 5th so we only had to pay for 1 session ourselves. So Maria might have the bigger bands eh? I thought that it might be an overseas thing. It is so different over there. I lived in Germany for a summer and could not believe the difference between doctors and meds. Well I better get back to work. Talk to you soon.
M

PS Thanks again PJ for everything you do.

[dipsy]

hi everyone, not sure which 1 sara is having will ask 2morow when she goes for her next sesion. never really thought to ask. hi pj could you tell me what the diffrences are, and is 1 better than the other.hi marielle i think everywhere the derms do things diffrent, but i am sure glad i dont have to pay for saras treatment, we get all saras treatments ,creams, shampoos, bath&shower additives ect free, i do bye some creams from health shops ect if i hear they are good but even these i can ask for on prescription from my doctor or saras derm at the hospital( well these are free till she leaves full time education) sometimes people moan about the health service here but we are very lucky. god bless maria

[PJ Leary]

Hi Maria,

Hopefully Mike will come along and post a helpful link for you.

I have just finished doing a bit of practical research on this subject, and I only have this to report.

The new, narrow band technology is the European one. That is why our American made Broad Band units cannot be retrofitted with the new technology. It begins with the difference with metric measurements, and goes from there.

Both are available here and in Europe. The " time " or millejoules used for each type are different. The narrow band uses a smaller , more compact ( narrow ) group of light waves than the older version.

I 6 foot home unit ( 4 bulbs ) costs $2250.00 according to my source at National Biologic. The most expensive unit, like you see in the hospital and Dr's offices runs around $25,000.

Regards,

PJ Leary

[MikeK]

PJ, you know me all too well! ;) LOL. :cool:

Here's a link to a the Q&A section of a web site for a company that sells uvb units. The explaination of the differences between the two uvb therapies is about halfway down the page.

http://www.solarcsystems.com/faq.html

Hope this helps.

Mike

[dipsy]

hi mike hi pj it is 7.16 pm here sara was at the derm clinic at 5pm for her uvb asked the derm nurse she said it is narrow band uvb sara is recieving she is half way through had 11 and 11 to go she is at 3mins 15secs. i guess they do it diffrent here. thanks for all the information had a look at the web site. talk to you soon god bless maria