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Newborn Baby - Mastocytosis
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Newborn Baby - Mastocytosis

Dear all

My baby boy name Qinyi. 7mths 1wk... who has mastocytosis... would like to know whether any med can cure? it will resolve until what age? what I can do for my baby? I'm pretty worry...

Thank you.
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474256_tn?1237993296
Hello!  Do you know what type of Mastocytosis Qinyi has?  Is it cutaneous or systemic?  Currently there are no cures for mastocytosis but there are medicines that can help some symptoms.  I have Urticaria Pigmentosa and I don't take anything for my type of mastocytosis.  Most inconvenient thing for me is just having the reddish brown spots on my neck and trunk of my body.  If your child has a type of Urticaria Pigmentosa I do believe that half of the children with it should see it disappear by adulthood.  I am part of the other half that still has it through adulthood but I do notice that the spots are fading little by little through the years.  I hope this helps you out some.
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Hi, jennifer,
my son age 7 months and two week, Emmanuel has also mastocytosis, he has dark brown spots all over his body am quite worried. I have been doing research to find a treatment but in mauritius its quite difficult .  

Am Anna2009
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Please help me to find a solution for my son who has mastocytosis... would like to know whether any medcin can cure? it will resolve until what age? what I can do for my baby? I'm pretty worry...

Thank you.
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474256_tn?1237993296
I'm sorry Anna but no medicine can cure mastocytosis.  Your son will probably have the dark spots until at least puberty.  In most cases the urticaria pigmentosa or some form of cutaneous mastocytosis  will disappear by adulthood.  Some types continue to have it through adulthood.  I have Urticaria Pigmentosa still and I'm 30 years old but the spots are fading slowly but surely.  My twin brother also has it but his have faded a whole lot to where you don't notice them anymore.  I believe your son will probably be fine.  His spots will probably look inflamed when they're rubbed against but they will settle back down and it will just cause them to itch a little bit.  I suggest getting a dermatologist to have a look at your son.  They know more about mastocytosis and will be able to diagnose what type he has and give you any advice on medicines that might help with any effects.  I've always been told by my dermatologist to use Benadryl if the itching gets to me but I find for me it stops after a little bit and it doesn't cause me any problems so I take nothing.  I hope this helps.
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Hi.  I just wanted to add some words of encouragement.  There seems to be a lot of variation with mastocytosis and all of its forms.  I'm finding that even people that are diagnosed with Urticaria Pigmentosa end up having VERY different experiences.  Here's my experience:
1.  I'm a 25 year old female and was diagnosed with U.P. at 3 months
2.  I have it spread evenly throughout my entire body (people frequently say they thought I just had 'interesting freckles.' haha)
3.  Although the doctors said it would fade over time, it has never faded.
4.  I've never taken any medication for it, not even Benadryl.  I have, however, found that I tend to get headaches more than the average person, I'm red and flushed for a longer time than most people after running, I am more sensitive to hot water (can only stay in a hot tub for about 10 minutes before my skin goes crazy), and I'm sensitive to certain clothes materials (no wool or coarse materials).
5.  Although I was a cute, nice, and sweet little girl, I did get made fun of every once in a while in school.  Kids automatically pick up on differences, and sometimes they don't know how to react to those differences, so they end up making fun because it's the easy thing to do.  Teach your child about their skin, how they are different.  Teach them how to react: I felt that taking an informative and 'as a matter of fact' approach rather than being defensive always worked best.  Drive the point that everyone has differences, some that are more noticeable than others, and that is what makes them special.  Start out young: read books to your child with messages about being proud to be different, love their skin, kiss their skin, don't view it or talk about it as a problem, don't try to hide it, don't avoid talking about it, and don't bank on the hope of it disappearing some day...
6.  If raised with the right attitude, I believe that growing up with U.P. can be such a growing experience.  I like to say that I have a talent of "putting myself in other peoples' skin" and empathizing with people more so than others.  
Hope this helps!
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