Looking for Info on My Son's Skin Condition...

Updated on May 05, 2008
S.P. asks from Baytown, TX
10 answers

Here is my story.....When my son was born, I tried desperately to nurse him as I had done so with his sister with no problems. He never would latch on (something to do with a high palate), so I just continued to pump and feed him with a bottle. After about a month of pumping every 3 hours (whew!), I had had enough and decided to put him on formula. He did very well but after a few weeks of this, he started getting brown patches on his skin. They kind of look like small bruises in a way. I really did not think anything of it (this is also the time when he started getting "baby acne") until I went to his next check-up and showed them to his pediatrician. He got a little freaked out and started calling around to try and figure things out. He did a blood count and at that time, my son's platelets were extremely high but his white blood cell count was normal. He was also a little anemic. Our pediatrician first decided that we should go to see one of the top dermatologists in Houston. At that visit, the dermatologist gave us the diagnosis of what he thought was "urticaria pigmentosa"....a form of mastocytosis. This is where your mast cells in your body clump together and show up as "spots" on the skin. If they are present in infancy, there is a high likelihood that they will disappear by puberty. They "could" itch him (however we have NO clue if they are bothering him because he is SUCH a happy baby and never cries!!). Anyway, the dermatologist then decided that he would like us to go to Grand Rounds (this is where about 50-60 doctors come in and look at you and then make their diagnosis without getting any info from you.) They were all pretty much in agreement about the urticaria pigmentosa. After all of this, our pediatrician still wanted us to go to hematology to rule out cancer. We went to the cancer center at Texas Children's and did blood work and they took a close look at his white blood cells. His counts were normal, but within the cells, his infection fighting cells were a little low and another type of cell was high to compensate. But, they came to the conclusion that everything was ok and they hoped to never see us again (another whew!). Anyway, our pediatrician agrees that the diagnosis is the urticaria pigmentosa and so we are sticking with that. The spots are continuing to pop up and they do not look like any are going away. He is a very good baby and the spotsvdo not seem to bother him. My question is, are there any of you out there who are or have gone through this? My only fear is that he will grow up to be self-conscious of his "spots". I would also like to know if and how long this lasts? I know that it is a very rare condition, so any info would be great! I just want the world for my son!!!

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So What Happened?

I appreciate so much all of the wonderful advice that I received. This site is so wonderful because as moms, there are so many questions that we have, and it is so comforting to know that there are other people out there who may be going through the same thing as you. We will continue to love our little angel and search for answers as how to rid him of his spots. Thanks again!!!

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B.K.

answers from Houston on

My son has the same type of spot on his chest. It first showed up at age 2-3 and is still their. He only has one about the size of a silver dollar on his chest. The dermatologist said it will disappear by puberty. He will be 9 in June and has never had any problems as far as being self-conscious about it. He goes swimming with his shirt off and never ask's about it. It's just something he has always had.
I would be interested in knowing what dermatolgist you went to because it has been 6 years since anyone has looked at it and the derm. I went to had no idea what it was and only got his info from a book he had. If you have a recomendation please email me.
____@____.com

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J.A.

answers from Houston on

I would look into getting your son checked by a chiropractor that specializes in Applied Kinesiology, Brimhall, or NAET. They will check all of the organs, glands, immune system, and hormones in your son for any kind of dysfunction--you need to pay close attention to the liver since that is where brown spots usually come from. The NAET or Brimhall techiques will eliminate any possible food or environmental allergies naturally.

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R.W.

answers from Austin on

I have no knowledge about this diagnosed skin condition, but I have a hunch and if he were my son I'd be willing to try anything so I would assume you are too. Food allergies, intolerances or reactions, can come in millions of forms it may have nothing to do with the change from breast milk to formula but then again it may. If he were my son I would take him off of any cows milk based formulas and foods, you can get breast milk from a breast milk bank, or try soy formula and I would try to get him off of any solid food besides rice and one or two pure vegetables or fruits. I would keep him on that diet for about 6 weeks because something that is systemic takes about 30 days to get out of the system at least. If there is no change then ease him back one food at a time in two week intervals, to a 'diet' with more variety and go on as normal, but at least you tried. I have observed that cows milk can cause all kinds of strange effects in people, some very mild and seemingly unconnected but you know whats the harm in trying? By the way I love cows milk and cheese and cream and eat it regularly, I get tummy aches when I have a large serving of it and one of my sons get a mild eczema rash when he drinks it to often so we buy rice milk and it is very good but we still drink milk too. Try a food intolerance search on google and see what you get. Good luck!

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S.T.

answers from Houston on

I haven't but I wondered if you tried a non cow milk formula to see if that helped? My daughter developed brown spots and I did as well. My pediatrician suggested it might be excema related to an allergy and so we stopped drinking cow milk and the spots went away.

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H.F.

answers from San Angelo on

I am afraid I can't offer any insight, or experience, I do know however, that pigmentosa spots can darken quite a bit with sun exposure, so be really dilligent about covering your baby, use hats and apply sunscreen as soon as your doctor says it is ok (I believe infant's pores aren't mature enough so they can get clogged by sunscreen and aren't able to respire (breathe) properly). Also listen to the song "Freckles" by Natasha Bedingfield...it is something we all should do to appreciate who we are and what we have!

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S.S.

answers from Houston on

I work with an alternative doctor and he said that you can have some natural products for this condition. Let me known if you want me to set an appointment with him over the phone, he's in Canada.

1 mom found this helpful
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O.C.

answers from Austin on

Look for a natural alternative,
here is a website with dr's audios, listen to what dr's say about skin problems and how to help with skin conditions.
www.DailyHealthJuice.com

helps with psoriasis, eczema, etc.

thanks and God bless you
Oly

1 mom found this helpful
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W.R.

answers from San Antonio on

Hi S.,

I am sorry to hear about your sons condition however you are very blessed that he is a happy baby!!!
This product I am about to tell you about may help your son, but I cannot make any medical claims because it is a natural product. So with that said.....Mangosteen juice has been used for centuries by southeast asian countries to rid themselves of skin maladies, dysentery, inflammation, pain, etc., etc. You can find more info from the website I will give you. This juice was introduced to the U.S. 5 years ago and has now become #4 in direct marketing sales and with only one product. That says a great deal about the efficacy of the juice. IT WORKS!!! I am currently using the juice directly on my face for those red spots and hard embedded white heads that pop up like pimples but never pop. Within 2 days these spots have shrunk in size by 2/3's. I am ecstatic. I also drink the juice which regulates my organs, supports my immune system and keeps me from having anemia and gets rid of free radical toxins. I could tell you alot more, like my 13 yr. old son has been off his asthma inhalers and ADD meds for 2 years now because of this juice. Like I already said, I can't make any medical claims, but if I hadn't at least given this juice a try, then my son would still be on "drugs" and I would still have these skin conditions along with the pain from sciatica, carpal tunnel and allergies. There is so much more I could tell you and if you would like to talk, then please feel free to call me. But in the meantime, visit this websit4e, www.freedomfrommeds.com, tab thru the pages to read the testimonials and hear what the doctors say. Do your child and your family a huge favor and get some juice, I know from experience that you will be thankful that you did.

W.
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1 mom found this helpful
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M.F.

answers from Austin on

S.,

My 4-year old was diagnosed with urticaria pigmentosa at 2 1/2. It was right around the time that my youngest was born, and my m-i-l had given her a bubble bath, to keep her entertained, while I was still in the hospital. She loved it so much, we started giving her bubble baths all the time (I'm generally a shower kinda girl), and that's around the time that her spots started showing up/multiplying.

Not long before all that, she woke up one morning with what we thought was a spider bite on the inside of her elbow (we thought maybe she had squished a spider, bending her arm in her sleep). The dermatologist thought it was just one of her "spots," kind of oval in shape, like the rest, just irritated more by it's location. I think I later read somewhere that U.P. can be brought on by venom, so in my mind, that's still a possibility. I also wonder if there was something in the bubble bath soap that was irritating her skin, as well. (Keep in mind - I'm no professional.)

The dermatologist explained that there was nothing that she could really do to help, other than giving us some ointment, to help keep the "spots" from (I think) getting crusty. We also ran a CBC to make sure her counts were okay (since this disorder can also affect internal organs). She also advised us to shower instead of taking baths, and don't use hot water, as that will irritate it. She also advised that we be very gentle when drying her off, because brisk rubbing would irritate or increase the spots, too.
(Though they're mostly cleared up, you can see a few of her spots at http://www.frensley.org/gallery/2138659_UbV5V/1/110815501...)

After probably 4 months of showers only with very mild soap and gentle drying, there was no trace, other than a small scar on the inside of her elbow, where the "spider bite" had been.

I was frequently asked if she had chicken pox or if she was contagious. I'd explain that "she's not contagious, but has a skin disorder that makes her skin cells go whacko and overproduce, causing the spots." I'd usually get an "oh, okay," and we'd go on with life.

I hope yours goes as easy as ours did, and clears up as quick if not quicker.

Congratulations on your newest addition!
M.

1 mom found this helpful
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R.L.

answers from Houston on

I did a little research (as I am sure you did) and it looks like this particular disorder is pretty rare, so you may not find responses from other moms who have experience with it. Here is what Webmd.com has to say:

http://www.webmd.com/skin-problems-and-treatments/urticar...

http://www.webmd.com/a-to-z-guides/mastocytosis-10871

There were a bunch of other articles too, but I had trouble finding treatment options. If the docs you saw didn't give you treatment options you may want to see a specialist who ca help.

If it really isn't bother some and the docs are confident he will grow out of it, then I wouldn't stress too much about it.

My son has eczema, and in reading about Urticaria Pigmentosa it seems that this may also be allergy related. So you may have to keep an eye on things like asthma, seasonal allergies and other allergic reactions.

Sorry I can't be of more help. Since it is a rare disorder you may be able to find a research study that may help find treatment or a cure.

Good luck!

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