Mastokids.Org

jaimie82 · Joined: 30 Sep 2007 Posts: 6

My Daughter is now 3 years old and has all of the sudden in the last 24 hours gone from having small brown spots to full out hives. She is also having stomach pain and vomiting. I took her to the ER to see if maybe it was something internal and they said no, although I am not sure they know exactly what they are talking about because they have never seen someone like her with UP. I am wondering if this is normal for a child with UP to have all of their spots become full out hives and if so do they go down or fade at all?? She was diagnosed with UP at 6 months old and other than a few irritants like a seat belt or extreme heat she is never itchy and they never seem to bother her until the last 24 hours. I feel so bad for her and in some way feel responsible for this.

Peanut_07 · Posted: Sun Aug 23, 2009 2:36 am Post subject:

oh gosh, that is so scary... I suggest going to her doctor that diagnosed her. I think that it would be best to ask a doctor that knows, especially if there are hives all of a sudden and vomiting, something needs to happen whether it be her mastocytosis or just being sick, it must be aweful! good luck!

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

How scary! Any new foods, medications, or other life changes recently that could have been a trigger?

I hope it clears up quickly and you have no further issues!

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

jaimie82 · Joined: 30 Sep 2007 Posts: 6

Thank you for your support. My daughter is okay now, her spots went back to normal. This was kind of a wake up call for me as up until now we never knew what could happen. I am going to try and get some more info on how I can be better prepared.

Thank you.

Jaimie and Lexi

Ethan'smom · Joined: 27 May 2007 Posts: 114

glad to know she is doing better!!! How scary!!
HUGS
_________________
"It's Ethan's world,
I'm just living in it"

lauren0005 · Joined: 16 Jan 2010 Posts: 21 Location: Allen Texas

Jamie82:

What did you end up giving your daughter to make the hives go down? I realize it has been 2 years since your post. Your daughter must be 5 or 6 now. How is she progressing?
_________________
Mom to Baby Ava (diagnosed at 10 months) You can email me at Lauren0005@aol.com

lauren0005 · Joined: 16 Jan 2010 Posts: 21 Location: Allen Texas

Jamie82: Sorry, just realized that I was looking at your daughters BIRTH date and not the date you posted Smile

still learning the ropes of this site as my daughter was just diagnosed yesterday. Maybe my eyes are just bad from 2 days of crying... who knows. Still interested in what made the hive outbreak go down though
_________________
Mom to Baby Ava (diagnosed at 10 months) You can email me at Lauren0005@aol.com

Bentleys · Joined: 05 Sep 2009 Posts: 23

Lauren,
I feel so bad for you that you have been crying, because I remember being there. When my little girl was diagnosed at 4 months old(she is now 9 months) I cried for like a week and did a whole bunch of research.
Honestly, and I have heard this a lot from the other Moms, you learn to look past it. When I look at my daughter now I dont even see the spots. She probably has 50-100 spots. They have mostly stayed off of her face, but still has a lot everywhere else. For some reason I just dont even notice them anymore unless they are red and hiving.
Another thing that took me a while to realize is that they only go red and only itch if something is bothering their skin. My little girl never really seems to itch. I guess every case is different, but it might help you to realize that she is not going to be in constant annoyance with itching.
I know that it can all be overwhelming at first, but just try to think of how much worse it could be. At first I was told that my little girl had skin cancer. When I heard it was UP I was relieved. kinda sounds funny but it could be so much worse.
Your little one is very lucky to have you as a Mom and I know that it seems terrible right now but it will get better!
Good luck,
Britnee Bentley
Mom of Destree- 9 months UP

lauren0005 · Joined: 16 Jan 2010 Posts: 21 Location: Allen Texas

Thank You Desiree! I am already doing so much better. I think the hardest part is hearing that some kids grow out of it. SOME kids?? I will be hoping for this, but my gut is telling me this is a permanent deal.
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Mom to Baby Ava (diagnosed at 10 months) You can email me at Lauren0005@aol.com

Bentleys · Joined: 05 Sep 2009 Posts: 23

Well it does say that only some outgrow it, but even for those who I'm pretty sure it does get better. I have heard that after age 5 symptoms pretty much disappear and then after age 10 they start to fade. Your daughter has UP right? I think that as long as it is not systemic she should have a really good chance of outgrowing it. Good luck!
Britnee

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

Lauren,

I was there too when my son was diagnosed at 6 months old. He is now 3 years old, and I can tell you that masto is just part of our life. Sure, I get tired of being asking about his skin and all that, but managing his condition is just second nature by now. At times, I feel very sad thinking about him dealing with this as he gets older, but it is who he is and he has never known any different.

I have even heard mothers of children who the disorder who are older say that their children don't want to "grow out" of their spots....it is part of who they are. I think that says a lot.

Good luck and let us know if you have any questions! You may also be interested in checking out our membership opportunities (see link on main page). Members get to participate in a Members Only email list, and it is a great place for support and advice.

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

Macy'sMommy · Joined: 28 Oct 2009 Posts: 4

Hi all,

My daughter Macy was diagnosed with UP at roughly 4 months. She is now 3 years old and has love spots pretty much everywhere but not on her face. This past week was the first time she has had a flare up with hives, it has happened 3-4 times over a 4 days period and now seems back to normal. We counter act the hives with Benadryl and they seem to go away. The main concern is what causes it - it is on everyone's mind. The more stories we share and experiences bring help to all. I enjoy reading these to gain knowledge wit the hope that someday and cureis found and more research is done on this issue. She was sick the week before with vomiting and fever but so was my other child who doesn't have UP so i am going to assume vomitinga nd hives in this case are not related.

Does anyone have concrete on what causes hives for there children?

...Tony & Ursula
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Ursula (Macy's Mom)
Ottawa, Canada

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

Ursula,

Most of us seem to see our children's masto kick it up a notch when there is an illness. Since all these systems work together, when the body's messengers are calling out the immune forces, the happy little mast cells jump in the fray, and thus starts masto issues for our kids.

I also want to mention that those of us on the members email list have remarked that this spring and summer seem to be particular hard on our children. Most of us have seen more frequent and more severe reactions than what is normal. I have no idea why, but seems odd that it would be happening to so many of us.

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