Help Us!

My 2 year old daughter was recently diagnosed with UP and it seems to have her doctors baffled!  My husband and I have been researching as much as we can on the web but I am coming up short on some things.   I have read that Asprin is a big no-no but what else?  Is this a condition that will be in the background all her life or will it be up front and center?  Any advice will be very much appreciated!!! 

ilovemyspottygirl ilovemyspottygirl
26-30, F
7 Responses Mar 4, 2010

My son is now almost 12. His spots showed up when he was 5 months old. It was March and the weather was warming up but I still had him in winter sleepers. I thought it was heat rash. He was diagnosed at 8 months. Since then, we have had many ups and downs. Right now is a down time. Here in Canada we are experiencing a heat wave and he is flushing and his rash is really flaring up. He does have some boys at school that pick on him but has some friends that stick up for him. He takes atarax and zantac and they usually seem to work well. Since his school does not have air conditioning in the classrooms, he has his own fan and spends his recess in the office (which is air conditioned).<br />
He has a great outlook and rarely does his rash get him down.

nancyb215 are you in the Toronto area? I have a four year old daughter with UP - she is completely covered, even some on her face. She is such a beautiful and joyful girl, but it breaks my heart when other kids whisper about her or say she has chickenpox (not to mention other parents/nannies!). We've all dealt with this.
She has just started junior kindergarten, and although she's very outgoing, and I've told her how to deal with questions, comments, looks, I can tell she is becoming self-conscious. I recently overheard her tell her twin sister (who does not have UP) that when her spots go away she'll be a princess. Oh dear. She doesn't take medication and fortunately seems otherwise healthy. We've taken a few things out of her diet that she may have mild allergies to. She sees a dermatologist at SickKids hospital (worst ever name for a hospital if you ask me). If there's anything you can share about your experience with Canadian resources or schoolyard bullies, I'd like to hear it.

Kia ora<br />
My 4 yr old developed UP at age 2-3 months in a heatwave. Over a 6-10 month period they spread from her jaw/necl over her torso and back; then over the next 2 years down her legs. Doctors have not known about it, including biomedical paediatricians and GPs. 2 allergists had to test to determine and one skin specialist recognised it immediately after a 2minute consultation and recommended steroid cream and sent me one my way. Needless to say I didnt take that option. Everyone assumes its excema but its quite different. She is sensitive to egg white and intolerant to wheat and gluten. I keep her off dairy. We try to keep her off red foods and high salicylate foods. I think sugar may be a problem. It has completely done my head in over years and has been quite depressing. Biomedical expert recommended at least give her a probiotic and at most a longlist of supplements incl. fish oils. Others have recommended lots of greens to detox the liver. She just wants to eat and be like other kids. She is super sensitive to heat, chemicals, preservatives, food additives and colourings. It is worst on her neck. today her back has broken out in itchy bites. She calls them her chicken pox and mozzie bites. She is a beautiful girl and seems to have worked through the self consciousness that has plagued her in early years but i do worry about her having to put up with all the comments and taunts from kids over the next 5 + years.

I am 51 year old male who developed UP at 4 mnths old after a bout with chicken pox. I always thought this was the cause of My UP, however, no one else seems to have gotten it that way in these comments. To be honest I have almost all but forgotten that I went though my childhood with the dreaded spots. I was covered from head to toe with the spots and to add insult to injury my older brother coined the spots Pooker dots and I was tourmented from both children and adults with no understanding or sensitivity. This made me grow up tougher and after many fights i developed a reputation and most kids averted attention to my leapard spots due to fear of a beating. I became a champion wrestler and broke records in track in jr hi and high school. My spots fadded at 13 and are just a memory now. Although, they still hide deep inside. I was recently in line at the bank and notice a little girl with blochy skin and wondered what was wrong with her skin. All of a sudden it hit me that she has UP just like me. The first time id ever seen anyone with this. I asked her father if she had UP and he said yes in surprise that i knew of this. l leaned down and told her I had the same thing when I was a child and it went away when I went into puberty at age 13. She got a big smile on her face and her father thanked me for saying something. I am now a successful physical therapist and UP is mostly a bad memory. Most children outgrow this but not all. I remember that mosquetos never bothered me and sunburns caused the raised hives and itching to get worse as did a hot bath. Eventually I believed that the spots made me special and gave me powers others didnt have. I hope this helps.

I personally have never tried any treatments. To be honest it wasn't until I joined this site that I really began to wonder what caused it. I had always wondered, but never seriously looked. As for food allergies, last august I went and got tested for food allergies because I have always had stomach problems. Turns out I have sensitivities to over 30 foods! I can still eat some of them as long as I watch my intake of them and predominately avoid them, others I won't be able to eat again.

My daughter is 2 and we were told at 10 months that she has UP. She has gone through ups and downs. The biggest issue for me is how to treat her. Both physically and mentally. She is going through terrible twos and I am lost. If I discipline her, she breaks out. Physically, when she eats certain things, she breaks out. When I bath her sometimes she breaks out. It's hard to know what is right, but my advise is to love her and get to know her body, most of the time I can see it coming. Keep a journal too.

My little girl was 2 weeks old when I first noticed a brown spot on her forehead, which then spread everywhere. Now she is 2 and seems very comfortable, and healthy. Same thing, doctors assure you they will out grow it with little compassion for your little one. So I just wait and hope that she will. Either way, she is amazing, I keep debating on trying one of the online treatments( carcitab,gemnitrax or pigmentin) have you tried any of these?

I've had it since I was two months old. From what I've read on here, and my own research due to my doctors being less than useful, it appears that everyone's is slightly different. I read a lot about people having flare ups and i being intensely itchy, I've ever only been itchy like around my ankles from boots rubbing, but the itch and redness can stay for days. Also any pressure on the skin will cause it to get red and stay that for a good 5 minutes on myself, and if i scratch myself it will get red and raised and stay that way for a good 10 minutes. <br />
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When I was younger the doctor told my mother that it would clear up by the time I hit puberty or turned 16, it typically does, but there are some cases, like mine, where it didn't. Which now raises questions on if it is internal and on my organs as well. ( I don't want to scare you with that, I myself am not sure what exactly that would entail, I've lived with digestive problems my whole life but that has been hereditary for me.) It did clear up a bit as I grew up. When I was a child only my face wasnt covered with the little spots and they were bright red. They've become less noticeable as I've gotten older and frequently are confused as freckles from those who don't know me. <br />
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My advice to you and your husband, is to get her to love them as a child, be comfortable with them. It's hard growing up visibly different from everyone. I almost guarantee that you/she will have to tell her school nurses and doctors what it is every time she see's them. They never seem to remember and never know what it is. Prepare her because she will get stares, she will get a million people asking her "hun, do you know you have a rash?", but if you get her to love them, accept them, it makes it all the much easier on her growing up. My dad turned Urticaria Pigmentosa into a little jingle so that I would always remember it when people asked, and it was upbeat so I felt pretty good about it. <br />
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If you have any questions feel free to ask me. I'd love to help as much as I can.