Mastokids.Org

[mom of cool kyle]

I am sad when I read your post and other parents' as well. It is a very diificult thing to contend with. People are so ignorant and don't even realize how thier comments can be hurtful to others (even after you've given them an answer and they still don't get it). Just want to let you know it does get easier over the years. I used to really struggle with it and then I finally realized I don't owe everyone in public an explanation about the way my son looks... and they can can all just get over it. I don't mean to sound harsh, but the final thing for me (that almost made me punch someone out) was being asked to take my 2 year old child and sit at the back of the airplane because the sight of him was making other passengers uncomfortable. That was over ten years ago and it is still hard to get over.
We are all so very blessed to have these wonderful children, but it has definitely been a lesson in tolerance.
_________________
Britta Kyle's mom

[Davo's mom]

Maybe this is for the new masto mom that is feeling over whelmed. You loving your baby and letting that baby shine is really all that needs to happen. I don't mind to put people at ease I'm afraid I might be the parent that would want to get my child away if I didn't know what was going on. So for my, my son , & their sake I just say it, it's over & David can shine. It seems if I'm O.K. they're O.k. & mostly Dave is O.K. That is really my main concern. He takes my lead so if I think he is the best thing in the world he will think the same thing too. Even my daughter 5 will pipe right up on her own"he's o.k. he just has spots, but they look good" we laugh! Anyhoo, don't let it get you down as mom's we all have broad shoulders, as a masto mom they just got a little broader!
My guy really is a site very spotty, but so delicious with so much personality I'm positive people don't see his spots after 1 min.!
Leslie

[danyell]

When my son first started getting these light brown spots every were his doctor had a case worker come in and speak to me,they thought I was beating him.Then at several of the late night ER visit they would just look at me in disgust,I could tell they thought I beat him or something and I would just tell them he has mastocytosis and to look it up and the try to say something.It sucks but people are always going to judge us because they dont know.
_________________
Isaiahs mom
diagnosed at 3 months now a wonderful 2 yr old
mastocytosis possibly systemic

[Macy'sMommy]

My daughter is three and was diagnosed with UP when she was 3 months old- she has spots pretty much everywhere except her face. AT first I found some situations almost unbearable- ie. swimming pools were horrible, or, if she lifted her shirt at the park everyone would stare, etc. I have gotten better about it- I found since it is such a rare disease, I use terminology with people like "she has very severe skin allergies- her skin is having an allergic reaction all the time"...allergies seem to be something people can understand these days, and I didn't like using the word "disease"..and I ALWAYS say - "it's not contagious."

If I see parents staring at her I actually go up and inform them what it is... I don;t wait anymore, becasue it makes me angry seeing them pull their children away from her. At the pool, i decided she;s weraing one of those big body type swimsuits (these days a lot of kids have them, with the arms & part legs) and I buy fun ones she likes, so it helps a lot.

I do think she will soon start asking why she has them and noone else does...she hasn;t figured that out yet (blessing for now). SHe is in nursery school, and I found that edcuating the teachers has helped a lot & I plan to do the same when she starts kindergarten next year. I may even do an educational day with all the kids if the tecaher will allow me- but am not sure if that will make her feel too "different".

I am not kidding myself though...my husband & I are prepared for many days when she will come home in tears from being teased, and I am not sure we can ever stop that completely, but we certainly can do everything to help her through these difficult situations. She is an amazing little girl, and I do believe she has this for a reason- she will do amazing things in her life, and I hope that because of the UP she will always see a persons beauty comes from within. I am actually a better person now because of my little Macy.

if anyone has any good suggestions on how to talk to her about this and what explanation to give her on why she has 'spots" for when she asks us (which I know will be soon) we would welcome any suggestions.

thanks,
Ursula (macy's Mommy)
_________________
Ursula (Macy's Mom)
Ottawa, Canada

[Cris R]

Ursula,

My son is almost 3 and we talk to him pretty often about his spots, and how they make him special because not everyone has them and God made him unique and all that. But, I have also been thinking, as you said, about how to explain why they are there in a more factual way, but on his level. I was thinking about relating it to children playing....if there are just a few, they stay pretty calm and not much happens. But, the more and more children there are, the more likely they are going to get overly excited and bounce around and maybe cause juice to spill or a lamp to break. Then tell him that is what a teeny part of his body called mast cells are doing. I think that would make sense to a small child.

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

[danyell]

Hello everyone, it has been a while.My son is three now and we have been informed that he has UP.6 months ago his spots started to progress and were spreading to all of his limbs and his neck and his hair line all around his face.So we asked for a new derm doc and they have started him on Photosynthisis,which we call the magic box and he loves it we go three times a week.He thinks he is getting magic powers.It has really helped the spots have almost completely stopped spreading and look lighter.It has also helped with the masterious outbreaks of red ichy spots everywere.so if any of you have not heard of this feel free to email me and I will gladly get you the info.
_________________
Isaiahs mom
diagnosed at 3 months now a wonderful 2 yr old
mastocytosis possibly systemic

[lauren0005]

We clear out parks all of the time. I just have to laugh it off. My daughter is only 17 months, so she doesn't realize it. I used to dress her in clothing that covered most of her spots, but I am not doing that anymore. We live in Texas and it is HOT!!! I used to get knots in my stomach everytime I was asked about Ava's spots. I don't care anymore. Small minded people can leave the park. It is probably better that my child does not play with theirs. Just like they don't want Ava to give their child spots... Well I don't want them to give my child stupid The less small minded people she is around, the better off she is if you ask me. So I don't mind when people leave the park anymore!
_________________
Mom to Baby Ava (diagnosed at 10 months) You can email me at Lauren0005@aol.com

[jacksmom]

I have found that people are less scared when my son has his Medicalert bracelet on. It has helped tremendously with looks and questioning. People who really want to learn still ask, but the people who are fearful that he is contagious figure out that it goes beyond illness.

I was guilty of always having it with us but not insisting he wear it. We are working on it:)

Kristy