Mastokids.Org

[Satori]

My daughter is now 9 and has been doing really well on the SM front for a couple of years and her SM has been believed to be GI limited for at least 4 years now. Her last masto type reaction was about 18 months ago from eating grapes and it wasn't pretty. Her stomach got really ripped up from the reaction and we had to put her on Carafate for a couple of weeks to coat her stomach so she could eat (the reactions cause chronic gastritis). She's been begging to try dairy, its been about 3 years I think since the last time she had dairy and it was a very small amount. I honestly don't remember how long its been. The last reaction I can remember was at a place we used to live at and we moved from there in 07 so its been at least 2 years.

Anyway her dairy reaction has always been ugly, lots and lots of severe projectile type vomiting with even very small amounts (no other symptoms, just vomiting and ripped up stomach). Were talking the amount in McDonalds french fries small. The reaction is not IgE mediated and is caused by the masto.

She wants to try dairy again since her little sister gets to eat dairy and its been a few years since the last time she tried it. The Dr has left it up to me as to when to try it again.

What would you do? It scares the tar out of me because of all the past reactions but she does miss out on a lot of stuff because of it like ice cream. I often don't have extra money to buy sorbet at get togethers or some parent shows up without warning with ice cream for the kids and my kid is left feeling left out even if I do have another treat, its not what the other kids got you know? Or on a lot of dishes she ends up not being able to eat simply because it has dairy. When you think about it, dairy is in most dishes in the US.

Would you allow her to try it? I'm really torn on this issue:(
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Mom to dd 9 (systemic masto), Celiac, CVID and dd 3, a whole list of issues and no masto.

[Cris R]

That's a hard call! As a mother, you want to protect your daughter, of course, but I also understand the desire she has to be like the other children. I think she is at a good age where you can discuss both options with her. Explain that you understand the emotional burden she faces, but by withholding, she feels better. If she tries the dairy, she may get sick again. Then, let her help you make the decision. Children this age get pretty good at weighing both sides of the situation and this would be a good learning tool as she gets older and is faced with more decisions on her own.

I am curious what you decide (or decided) and how it turned out. Hoping for the best!

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

[Satori]

We ended up doing it and everything seemed fine but we saw behavioral issues so were limiting it to small amounts in baked goods on occasion.
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Mom to dd 9 (systemic masto), Celiac, CVID and dd 3, a whole list of issues and no masto.