children with psoriasis
Posted Wed 21 Sep 2016 20.57 by Clarabell
Hello,
My daughter aged 7 has had very severe psoriasis for a year now. Most of her body, hand, feet, face and scalp are covered.
We have tried lots of treatments to varying degrees of success. She is about to embark on phototherapy.
It has really effected her mental health and confidence and I just wondered if anyone knows of any support groups for children? Or any other suggestions on things that have helped their children.
Many thanks
Posted Wed 21 Sep 2016 21.12 by PAsufferer
I am so sorry. Psoriasis is horrible for everyone but I couldn't imagine what it would be like for her.
I use aloe vera based products that are great for every member of the family especially children. If you would like more info I am happy to help ☺
Posted Wed 21 Sep 2016 21.16 by Clarabell
Thanks for this. Can you let me know what type and where you get them?
Posted Wed 21 Sep 2016 21.36 by PAsufferer
They are called forever living,don't know if you've heard of them. But this is a link to the lady I get them from.
https://shop.foreverliving.com/retail/entry/Shop.do?store=GBR&language=en&distribID=440500111766
Posted Thu 29 Sep 2016 22.07 by wendizzle92
24, Psoriasis warrior since the age of 7.
I developed psoriasis at 7, it was severe and light therapy really really helped. As for the confidence side of things, its hard when you're a kid but i think with support from family/friends that really helps. Hope it starts to clear up for her soon xx
Posted Wed 25 Jan 2017 09.48 by nikkirushin
Is there a UK annual meet for children who suffer and their families?
Posted Mon 30 Jan 2017 17.08 by Haynes71
Hello Clarabel,
My 11 year old daughter suffers badly and has done since she was 2 years old. If there was a support group for girls her age I would be really interested to hear about it as she feels like she's the only one. It is affecting her mental health and it concerns me that when she starts high school in September and meets new people they will question her about her skin (her current school friends have grown up with her having psoriasis). How did the phototherapy go did it help?
1
Posted Tue 28 Feb 2017 23.48 by Sapphire2
Hi All,
My daughter is 12 and has had p for a year now, but it's really come on fast and is now all over her , scalp, hands , feet, ears, legs arms, and now starting on her face :( Weve got Dovabet, diprobase, betacap and nothing seems to be working. Any recommendations? Especially for the scalp, that doesn't make hair greasy...the itching is driving her up the wall.
Thanks
Posted Thu 2 Mar 2017 10.52 by Roland
I feel really sorry for kids with Psoriasis, there is enough pressure on them at that age as it is.
I have found coconut oil is good as a moisturiser and it seems to help a little.
I still cover up as much as I can and use a concealer on the bits I can't cover.
Posted Mon 6 Mar 2017 13.15 by MummyT
Hi all, I'm new to the forum but worried my daughter has been misdiagnosed with eczema when it could be psoriasis. She has it on her scalp (which is where I have psoriasis) and her arms. Only tar based products helped me and the shampoo she has been prescribed is the same but I'm worried about prolonged use as it's quite strong, she's only 3!
Everything we've tried on her arms seems to work at first then stops.
Do you have any recommendations for more natural products please?
Thanks : )
Posted Thu 2 Apr 2020 06.13 by JanePoppy
My daughter is 9 and started having psoriasis in Sept on her body after having strep throat. We moisturised and within three months it had cleared. In Feb she then started having it on her face and although we have used some creams, it has recently got worse and started glaring up on her neck. She has coped with it so well but recently it is really upsetting her because she can’t see any improvement. I have had psoriasis for 42 years so know how it can affect your mental wellbeing. I truly hoped my daughter would never have it, so I am devastated she has but more because it’s on her face. She feels she would like to know of any children who have it so I would be very grateful to hear from anyone whose children have suffered with this skin condition.
Many thanks.
Jane
1
Posted Thu 2 Apr 2020 07.50 by Haynes71
Hi Janepoppy
My daughter is 14 now she was 11 when I posted on here. Shes had psoriasis since she was 2 and has dealt with it fairly well over the years. She does get down about it and questions why her, and obviously I cant give her an answer, other than she isnt alone and lots of people suffer with it and that shes beautiful inside and out, unusually we dont have it in the family. I'd love to know if there is a group for kids with psoriasis, if you come across anything please let me know. She uses Enstilar and it works well.
Best wishes
Rebecca
1
Posted Thu 2 Apr 2020 14.42 by JanePoppy
Hi Rebecca
Many thanks for your message. I am sorry to hear your daughter also suffers with psoriasis.
I am not familiar with Enstilar, but it is good to hear it is affective. Has your daughter been using it for long?
Have you seen the blueberry forum on here? I have been. eating blueberries for over a year, and my skin generally is much better compared to how it was prior to eating blueberries but as yet they have not helped my daughter. The psoriasis can get worse before it improves so she could be at that stage. They have worked for a number of people as you will see from the forum.
If I do find any other forums relating to children with psoriasis, I will let you know.
Best wishes.
Jane
1
Posted Sun 12 Apr 2020 21.42 by Ljane1980
Hi everyone
I’m so glad to have found this forum.
My daughter is 11 and was diagnosed with P in March, although had been suffering for about 3 months before then.
The wait to see a dermatologist on the NHS was 40 weeks so we went private as the GP gave us a diagnosis of pityriosis rosea but it was getting worse and worse.
Mainly affects her face and scalp with a few other areas on her upper torso.
We have an ointment called protopic which has been great on her face. We have coal tar for her scalp but this doesn’t seem to be helping and most of her scalp is covered now. Her ones on her torso don’t respond as well to protopic. We are in limbo at the moment with the covid pandemic, and awaiting another dermatology appointment but this could be months away. She is supposed to start high school in September and I am so anxious for her. It seems to be consuming me more than her, she’s quite relaxed about it, apart from when I nag her to apply her cream and use the shampoo... which smells really bad !
I was hoping the good weather over the last week would help but it seems to have caused another flare up and made them really red and angry again. I’m seriously considering buying a phototherapy unit to use at home, does anyone have any experience of this? Right now I’m willing to try anything to help her. She is otherwise fit and well, there is no genetic link for psoriasis and we have no idea what has triggered this. Thank you for any advice you can give.
Posted Sun 12 Apr 2020 21.54 by Haynes71
Hi ljane1980
My daughter is 14 and uses enstilar foam it was recommended by dermatologist when she was have light therapy. It works pretty well but she always flares up as soon as we stop using it so its a constant thing I encourage her to think of it as part of her "beauty routine" as she'll happily spend hours in the mirror! Might be worth asking to try enstilar. I've also considered getting a phototherapy unit... I'd be interested to hear if what you decide x
Posted Mon 13 Apr 2020 05.43 by JanePoppy
Hi Ljane1980
I feel your pain as my daughter who is 9 is going through similar with her psoriasis. She started getting it in Sept on her torso after a strep throat infection. It cleared after moisturising for three months which the GP said it would. She then had a cough and cold in Feb and it flared up again but this time on her face.
We went to see a dermatologist, who prescribed eumovate, which originally appeared to show some improvement but after a week of reducing to using it a couple of times a week as advised, it came back worse on her face and then she started getting a rash on her neck and torso. We went back to the dermatologist two weeks ago and she said the new rash was also psoriasis and prescribed Betnovate to use for a week, and then to reduce to eumovate for a week. My fear was after reducing to the milder steroid, the psoriasis would come back worse and within less than 24 hours it did.
I am so relieved that my daughter does not have school at the moment but am also concerned about when she does go return.
I have suffered with psoriasis for years, but am fortunate that mine is much better. I generally have not used steroid creams as know it can come back worse once stopping. Protopic is effective for the face but I seem to remember my dermatologist saying years ago that it isn’t effective on the body. I don’t know if it is the same for your daughter’s skin condition, but dovobet helped but can only be used for a maximum of four weeks and then from memory needs to have a period of time of not using before using it again. I have not used Enstilar but have also heard good reports.
Has your daughter used antihistamine as wonder if that could help in calming her skin down?
It’s a mind field and such a worry as a parent to see our children go through this and not feeling in control of knowing how we can help them.
I hope both our daughters show improvement very soon.
I will be interested to hear how your daughter gets on.
Best wishes.
Jane
Posted Mon 13 Apr 2020 10.57 by Ljane1980
Thank you for replying Haynes71 and JanePoppy
It is such a mind field and I feel like its all I have thought about over the last few months. I felt like we were making some progress when we saw the dermatologist but now waiting for a follow up appointment I am worried we will go back to square one. I plan to chase up the dermatology department tomorrow to see what their provisions are during the pandemic, but for now we are reliant on our GP to issue repeat prescriptions of protopic. I dont feel that I can pester them at the moment for a review, although they may be happy to do a telephone consultation with me and I will mention the medications that you have both recommended.
I have done lots of research into the home phototherapy units, the canopy beds are very expensive around £1000 to buy, but I was thinking as her psoriasis only affects her upper torso at the moment (she does have one large one on her leg) I thought we may be able to use a smaller hand held unit which are around £150. I have read so much about this and have found some reputable companies that sell the units with the same Phillips narrowband bulbs they use in the hospital so I am hopeful...... I am always hopeful for her.
Strangely we first noticed a few areas of dry skin when we were on holiday in Feurteventura and once we got home it got worse from there, so i dont know if the sun was a trigger. The GP diagnosed pityoriasis as he thought the initial patch was what is known as a 'halo patch'. the dermatologist knew straight away that it was psoriasis, but we are unsure which one.....after my extensive reading I think Plaque psoriasis, and i am just hopeful that this will have periods where it goes completly.
I will let you know how we get on with the GP, Dermatologist appointment and if we embark on the home phototherapy unit.
Thank you for your advice and support, wishing all our little ones well
Laura
Posted Mon 13 Apr 2020 16.29 by Tina77 (edited Mon 13 Apr 2020 16.31 by Tina77)
Hi there
We are in a similar position as Ljane1980, our son is 11 and since March has been being treated for pityriosis rosea by our GP and we are currently waiting for a private dermatology appointment. We have P in our family and believe it is P for him 😞. He has area's on his face, scalpe, neck, torso, stomach and back which are getting progressively worse.
Its heartbreaking to see on his young face and small body. Will be keen to hear how you all get on.
Best wishes to all.
Tina
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