is there anyone out there with a child with mast cell desiese

Jamie - posted on 06/07/2011 ( 7 moms have responded )

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My name is Jamie, I have a 2 yr old that was dignosed with mast cell when she was 3 months old. It is terrible most kids won't even play with her because they think she has chicken pox. I just need someone else to talk to if there is anyone that is dealing with this desiese send me a shout.

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Jamie - posted on 06/09/2011

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It is not hereditary. no one in my family or my husbands family had anything like this. All they keep on telling me is that if she still has these spots when she is 5 I need to have her bone marrow tested again for cancer. This is still a very rare disease.

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Anthony - posted on 09/01/2012

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I have had mast cell since I was about three. In most cases it goes away by puiberty. But in some cases it will further develop into adult hood such as myself for example. your childs skin is going to be really sensitve she can,t be in extreme heat or cold whatever she is alergic to will cause hives as does the extreme weather. when this happens take her a luke warm bath. you can take her to the hospital so doctors can moniter it and decide if it will develop into another form of mast cell. they will mostlikely take a sample so do not be alarmed.as for school give them doctornotes and explain to them how it works. Do not worry about her health it is exremely rare for it to develop in to a health risk rubing the cells (lesiues) will cause them to swell so try to teach her not to scrach. The other thing your daughter will experiance is self consciousness about her skin just tell her comferting things and that she is pretty and other helpfull stuff. I am 20 so I think I know what I'm talking about. your best choise though is to go to the doctor for them to observe it and decide if it will develop or go away. whatever you do goodluck to you and your daughter

Elfrieda - posted on 06/11/2011

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Oh, that's hard. :( I'm so sorry to hear it. I think my parents were sick of doctors by the time my sister was 5, and they never did that test. But that would explain my mom's nervousness when my sister started bruising all the time in high school. (she was just anemic)
I really do wish you all the best.

Elfrieda - posted on 06/09/2011

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Oh, I have a question. Back when my sister was diagnosed (over 20 years ago) they knew almost nothing about this disease. It was horrible the way they poked and prodded her to find out what was wrong. I have been wondering, is it hereditary, or how does it happen? Do you know? I sure hope I won't pass it along to one of my kids.

Elfrieda - posted on 06/09/2011

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Oh, I'll bet. Poor both of you. Does she have the all-over blisters?

One thing that really helped my sister was no contact with chemicals from clothing stores. My mom got special natural laundry detergent (Shaklee) and would never use soap to bathe her either, she always just used baking soda, which helped with the itching as well.



Aw. :( I feel sorry for your little princess. I hope it goes with her like it did with my sister, where it got better and better with time. By the time she was 7, she wasn't breaking out in blisters anymore, and now she's in her twenties and doing great. (she still uses the special laundry detergent, and has some sensitivities, but it's not ruling her life by any means)



That is so rude that the parents won't let their kids play with her! Maybe you should form a group of people for playdates that know you and your daughter, just so that there aren't the constant weird looks.



The only problem with other kids my sister had was in grade 4 when she went to a new school, her friends thought it was funny to lightly scratch her arms and legs, because of the huge welts that would form! So annoying. I was so mad, I wanted to go over there and rough them up myself, but my sister wouldn't let me.



Oh, speaking of huge welts, another trick my mom had was always having a wet cloth with baking soda in her purse (in a baggie) so that if my sister got really itchy, she would soothe it with that.



Well, I hope you find some people who can support you on this! I know I'm not exactly what you were hoping for, but I hope some of those tricks will help your little girl.



Be well.

Elfrieda - posted on 06/07/2011

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Is that the same thing as mastocytosis? My little sister had that. I have never even heard of anyone else with it!

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