Daughter with mastocytosis

Renea - posted on 01/01/2013

my 2 year old has it to. I was wondering, when it gets cold does the bumps get redder and maybe bigger? And is it ok to give her benadrly?

Jessica - posted on 09/24/2009

Quoting Erin:

I have chosen at this point not to go ahead with a biopsy to find out if she is systemic, but am now second guessing that decision because her grandmother and her fathers aunt have recently been diagnosed with luekemia. I had a very difficult time getting a diagnosis for Mariah I was told the same that the 1 st lesion was a birth mark and then it went to being diagnosed with scabies, from there on I was turned in to child services for abuse because she looked like she had bruises all over. That went on for over a year every time I took her in for a well child check.

I can so relate to this. My daughter was diagnosed at 8mths with Mastocysosis.

It begun with a rash on her neck that seemed to spread down her back and front. She was only 2 in a hlf mths.

She had it in the creases of her arms and legs, her hands and feet..

My moms friend is a nurse so she brought me to the ER..and they said it was Contact Dermamtitis...from using fragranced laundry soap..and the nurse said the blotchy skin was bcuz her skin was confused on what color she wanted to be..bcuz she's mixed..iam white and her dad is mexican...but that was when she was 4mths..

when i went to her WCC they said is was Scabies...she was 5mths...

At 5in a hlf mths...her dads mom felt bad and bought sum off brand anti-itch cream and we put it on her after a nap. she turnned red (flushing) and i went into panic mode! I told them to wash the cream off and see if that helps. She begain to get drowsy..which i knew was wrong bcuz she just woke up from her nap..so we dressed her and brought her to urgent care..there they said is was an adverse effect from the cream (basically she's allergic) and the rash was not scabies...he gave me some numbers to dermatoligists. i called and made an appt.

When she was 7mths she was finally seen. They knew by the blotchy spots it could be Masto. The dermotoligist lightly scrachted her on her tummy and it turnned red with in seconds! I was confused but he explained why it had done that. When they said Mastocytosis..i was like HUH? Is it bad...good..what? i was only 17! and my daughter was 7mths..they didnt wanna diagnosed her right away...they took a skin biopsy..and they called me 2wks later...they said to me..its the worse case they have seen and the usually treat cases like that at their office. So they referred me to U of M in Ann Arbor. I called and set an appt. there and it was June 2008 when i had took my daughter, Camylia. They drew blood and examed her and told me that they wanted to take pictures to use in a meeting and to help diagnosed it more bcuz its so rare..it can go unknown. So i agreed. They also said its the worse case they've ever seen and they wanted a follow up that Dec. to see how it got..bad or good..but i could not make it. She had her worse out brake Sept 2008. She had a pearl necklace of blisters around her neck, the top of her back and one on her wrist and one on her ankle and one on her inner thigh...those 3 were weird bcuz she never had blisters there before..but it took her 2 wks to recover. U of M wanted to see her that Oct. but her doctors never got bk to me to get a referral for the insurance comp. to take me to Ann Arbor again..

Both U or M and the Dermatoligist told me that she'd grow out of it by the time she was 1..since she got it young...BUT she's now 2...its not so bad as it was..but she still has the blotchy skin and she gets sick easily bcuz of it. I have to carry an Epi-pen just in case she has an allergy attack...so far i kno shes allergic to benadryl cream...other then that..i have no clue...but i limit her milk intake and her citrus intake...i dont give her orange juice unless its watered down very good. She gets hives once in a while...or white bumps with a redness..she even wakes up in the middle of the night crying...i was told it could be night terrors...i do not think thats bcuz of the Masto...

Other then all that...she's very healthy and she loves eating and she loves playin outside..

I have an 8mth old son..i was worried he might have it..but so far..no signs of it. and they told me its rare for 2 kids in the same family to have it. so iam thankful for that.

Erin - posted on 07/16/2009

I have chosen at this point not to go ahead with a biopsy to find out if she is systemic, but am now second guessing that decision because her grandmother and her fathers aunt have recently been diagnosed with luekemia. I had a very difficult time getting a diagnosis for Mariah I was told the same that the 1 st lesion was a birth mark and then it went to being diagnosed with scabies, from there on I was turned in to child services for abuse because she looked like she had bruises all over. That went on for over a year every time I took her in for a well child check.

Deidre - posted on 07/16/2009

Does your daughter have cutaneous or systemic? We had problems sledding outside in those temps as well. It's so scary. My daughter Skylar has it and she just turned 2 last week. We found out a couple of weeks before her first birthday after being told it was a birthmark and then impetigo. She's doing good now that we know what's going on.