Greetings everyone.

My 16 year old son has beed diagnosed with Keratosis pilaris rubra and Keratosis pilaris atrophicans faciei, and is suffering quite badly from it. The onset of this afflication began 12 months ago, and has increased in severity very quickly. He suffers extremely painful stinging and "stabbing" attacks due mainly to rise in environmental temperature, humidity, and any physical activity. He can no longer participate in any sports (of which he was very keen), and can't walk any further than 50 metres without experiencing an attack. HOwever these attacks can develop in the coolest of winter evenings, or the middle of the night without any heating on. In the summer he has to constantly sit in front of a fan for relief, or in an air-conditioned room.

I have attached a pic taken recently, while having one of these horrible attacks.
I am just interested if anybody has experienced attacks of this sort, knows of anyone who has. Any feedback would be greatfully appreciated.

Attached Thumbnails

 

Hi Jazzie

I have KPAF also - Keratosis pilaris atrophicans faciei is not all that common. keratosis pilaris rubra faciei - red KP bumps on the face - seems to be more common.

At your son's age I had both also. The KPAF seems to actually attack the skin more leaving small pitlike impressions on the top of the cheeks. The skin becomes very red and inflamed and sore and when inflamed takes hours to cool down again. It is very sensitive to hot/cold, spicy food and alcohol.

There is a couple of medical journal articles that document successful treatments with KPAF. The link below has both articles on the site.

The first article talks about pulse dye laser treatment - I have had 2 treatments in New Zealand (where I live!) and this has helped reduc the redness. I will probably need a couple more for my skin to be near normal in colour. I am age 45 however and the active stage of the KPAF has finished just leaving my skin red and scarred.

The second treatment is using a drug called Roaccutane - I tried this at around age 37 (when I was finally diagnosed) but it did not help me. There is also a further article on 'medline' where an Australian Dr also trialled it with success - I will try and find this article for you and post the link to it.

If your Derm is not aware of these articles I suggest you talk to him about them to see if these treatments are appropriate for your son.

I really feel for your son having been where he is and am more than happy for you to email direct or even phone me. My email is gogorman 'at' orcon.net.nz

regards
Anne


http://www.angelfire.com/journal2/sadhelp/kp.htm

Hi again - found the article. You will note that the term 'atrophoderma vermiculata' is used - now this is where it gets tricky. My official diagnosis was Keratosis Pilaris atrophicans faciei with the variant of atrophoderma vermiculata. As this condition is rare different names are used by different derms in different countries. atrophoderma vermiculata is the name for the inflamed redness on the cheeks and the subsequent scarring and pitting, which appears to be what your son has. You may want to check with the derm that the term 'atrophoderma vermiuculata' applies to him.


'A case of atrophoderma vermiculatum responding to isotretinoin.Weightman W.
Department of Dermatology, Queen Elizabeth Hospital, Woodville, Australia.

Atrophoderma vermiculatum (AV) is a rare disorder leading to reticular or honeycomb scarring of the face and responding poorly to treatment. A case is now presented of the successful induction of remission in the inflammatory component of the disease following a prolonged course of isotretinoin; improvement was then maintained after cessation of the treatment. In severe cases of AV with significant scarring, a trial of isotretinoin therapy is thus worthwhile in an attempt to stop progression of the disease and improve its cosmetic appearance.

PMID: 9692315 [PubMed - indexed for MEDLINE]

This is just a summary of the article - you should be able to get the full article from your dermatologist.

I have a 12 year old son who looks like he may be developing my condition also - when it is clear that he is the above treatment would be what I would ask for.

The laser treatment can reduce the redness but it is so much better if we can stop the imflammation stage and the subsequent damage it causes to the blood vessels and the skin on the cheeks.

I hope I haven't overloaded you with info! Please let me know if you have any questions. I am no medical person but have been where your son has been and hopefully can provide some help and encouragement in all of this.

Regards
Anne

Hi again - just read 2nd article again - and noted they use the word Isotretinoin (this is the same as Roaccutane) and to make matters even more confusing they use the term Ulerythema Oprhryogenes.

Again as these conditons are rare the names get used differently depending on what 'school' you went to. Ulerythema Ophryogenes is where the eyebrows are affected (I have this also). It appears your son's eyebrows are fine. Often UO and KPAF appear together (as in my case) and the term KPAF is used to describe both of them .... confusing! - yes!

Hope I haven't lost you with all the jargon!

Be encouraged -there are treatments out there for KPAF that have been medically trialled and documented as successful - there is definate hope for your son's condition.

I'm very sorry that your son has such bad outbreaks. When I was 16 I had it so bad on my arms that I didn't wear anything above my elbow, and when I would talk to my mom about it she said no one notices it. Well everyone noticed it, and it brought my confidence down alot. Its really good that your taking the initiative to try and fix his KP now.

I never had outbreaks, though. Mind was just constantly there since I was 3 months old. I hope everything gets better for your son, though. I know how hard it is being a teenager in high school with KP.

D-man5655,

Thanks so much for your input. Have been off sick for a few days and just back on the computer.

Callum has missed a lot of school because of this, and had to end up pulling him out. Home school him at the moment, however, the specialist is trying him on a drug with which the specialists's colleagues have had some limited success - although he said the other patients weren't as bad as Callum. Anyway, it is worth a go. Giving it 6 weeks to see if there is any improvement. Callum's not too concerned with his looks, however it's the pain and itching that get's him down a bit, and not being able to participate in any sports. The hot weather has arrived with a vengience, along with the humidity - and that really plays havoc. Really appreciate your message and comments. Will let you know how the drug is doing ... the doctor said it would take a couple of weeks if there is going to be any improvement. Best wishes

Have had look at quite a few posts to get a handle on the affliction, and quite a few have had it since a young age. Don't know how you coped with it. Callum's only been effected for the last 12 months, and it hasn't been good. He gets embarrassed when he has an attack and the big red blotches appear - he is ok with his face, however we plan to get laser treatment after summer has passed. Have taken note of some creams and lotions to try from other people's posts, and plan to try some of them soon. Thanks again for your kind words, really helps.

Hi, Jazzie

I've had it that severe on my torso/stomach (not on my face, though). I replied to one of your posts in another section. It's a very difficult thing to deal with when your going through your teenage years. It was very traumatizing for me, especially as a young girl. And I know how bad the itching can get. I just went through a bout this past month. I really, really hope that he finds something to alleviate his problem and I empathize with him.

Take care

Jazzie - I posted something on the thread entitled - Could it be something other than kp - that may or may not be pertinent to your son's situation. Your son's picture is so incredibly similar to my stomach area that I had to let you know. Check it out and best of luck

Yes, thanks for that. I have had computer problems over the last 4 or 5 weeks, and still trying to catch up. I do appreciate your feedback. Callum has been prescribed a low dose form of hypertension drug by is specialist. It seems that they have had some moderate success with it with other people (with less severe symptoms). He's been on it now for about 5 weeks, and I can't see any change at all. Then only change has been to his sleep patterns, or lack of it. He doesn't sleep much through the night and he's always tired throughout the day. I don't know if that has anything to do with the drug - it could be something completely different, although it started about the same time. The attacks he gets are still pretty nasty, a lot of that I think is the very humid wether we are experiencing at the moment. Just trying to keep the moisturizer up at the moment, it is making a difference on his face, less leathery. We are going to have laser treatment once the weather is cooler, and I'm hoping that it will help him a bit , and also help his self esteem. Have you found anything that works to diminish the red blotches...? Thanks again for your kind words.

Hi Jazzie

Just been thinking about those red blotches that Callum and Freedom have ....strange that they are also quite itching and tend to come in attacks....

Does the derm call this KP as well? From being on this forum off and on for a few years I can't remember anyone else talking about itchy blotches on their stomach. (KP yes - but not real itchy). I think I said to you I have the KPAF but have never to my knowledge had the stomach thing.

Just musing away here ... if the stomach blotches appeared at the same time as the facial redness and other general KP you would suspect they were related - though why isn't it constant on the stomach like KP in other areas?

I feel for both of you -having flushed facial skin is bad enough but having itchy skin must be really annoying.

I hope you can both get some answers and effective treatments for this itchyness and also the other KP symtoms

Anne

Hi, Jazzie

- I'm curious about the hypertension drug that the specialist prescribed for your son? What is the rationale behind that? Has the doctor explained? Is that supposed to help his skin in some way? And if so, how? I figure he's a little young to suffer from hypertension in the first place... I happen to suffer from it (diagnosed a few months ago) and take medication for it. I've never seen any link between that and my skin, though.

As for the blotches, mine are dark black rather than red, since I have black skin. And no, I haven't found a solution for that at all. I've noticed that the bumps receded quite a bit, again though once I started back on the minocycline (the ones on my stomach anyway - they're almost flat). The kp on my thighs, legs and arms is another story, although it's not as severe there and I could always live with it. The trunk area was always my biggest concern. I don't have it on the face. I thought I was starting to develop it a couple of weeks ago but it disappeared (I think it might have been a temporary side effect from the oil-pulling I started).

I did notice that on my research on kp. It can be itchy but not debilitatingly so, like Jazzie's son and I suffer. And where it's particularly itchy for me is on the stomach area, which is why I think that there might be another skin condition concurrent with the kp. For my part, it's eczema and recently, as I've been told folliculitis and boils. I'm waiting to see what my antibiotic course of treatment ends up doing to report on it. My derm told me that he's seen many people in his practice with other skin disorders along with the kp and that it's not the least bit unusual... Waiting to see. Thanks for your words of encouragement.

I have kp and my face gets very red but is not as red as his does anyone know how to take the redness away. Also it's only red when it gets hot but is lightly red normaly.