Mastokids.Org

kath_dilley · Joined: 25 Feb 2009 Posts: 12 Location: Boscobel, WI

Do any of your masto kids have a different color to there skin. Our daughter Hannah has a yellow/orange color to her hole body. My husband and I are both light colored. We were told months ago that this was because of the orange veggies that she was eating but now she is on all adult food and does not have a hole lot of orange veggies. We saw the Derm last week and she seemed to be some what concerned about her color. She said to have her ped check it out at her next apt. I was just wondering if anyone else had had a problem like this!!

lorna · Posted: Mon Dec 14, 2009 6:38 pm Post subject:

Matthew has gone beyond the yellow/orange color and is now tanned. I think that it could be masto related. I don't think you have any cause for concern. But it wouldn't hurt to get a CBC done to check the liver to be safe.

Lorna
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Mom to Matthew, Diffuse Cutaneous Mastocytosis.

kath_dilley · Joined: 25 Feb 2009 Posts: 12 Location: Boscobel, WI

How old is your son and when did he start to turn yellow/orange? Hannah is 13 months and has been that color since around 6 months. We had a blood test done yesterday but have not heard back yet. I think it is just her color too but her Dr thought we should be on the safe side and have a blood test done so we did. I hope everything comes back ok.

momto2 · Joined: 22 Jan 2009 Posts: 17

My daughter looked very tan for a while. I don't remember when it started but it went away not to long after her first birthday.

lorna · Posted: Thu Dec 17, 2009 10:17 pm Post subject:

Matthew turned 3 in august. He was diagnosed with masto when he was 6 mths. People keep saying "lucky it's not on his face". I tell them that it is on his face it's just one be spot Smile

His skin coverage is pretty extensive. In between the red/brown splotches, the few places where there is actually a gap, the skin is yellowish brown.

I bet your little one's results come back completely normal, just as Matt's continue to do so - his serum tryptase was 29 last year and 32 this year. He has blood work done once a year. He's getting better at the whole process. I bought a dr's kit for him to practice with. He gives me "shots" and I give him "shots". When we got the blood work done and even his flu shots (swine and regular) I was honest with him about what was going on (I waited of course until we actually got there) and only cried for a sec - told him it was very important that he be very still.

take care,
Lorna
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Mom to Matthew, Diffuse Cutaneous Mastocytosis.

Cris R · Joined: 27 Jun 2007 Posts: 499 Location: Bluffton, SC

Lorna,

Jake (now 3) just had his blood work done too, and like you with Matthew, I was amazed at how brave he was. He just sat there and watched it, fidgeted a little when he was stuck, but otherwise stayed so calm. He cracked me up by saying, "Mommy, they're writing on my arm!" What a great idea to have the medical kit for play at home. I may borrow that idea!

Cris
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UP with Jake!
3 year old cutie pie! (Urticaria Pigmentosa)