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infant with urticaria pigmentosa (Read 2757 times)
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infant with urticaria pigmentosa
04/21/12 at 17:29:57
 
Hello, I found this site while researching urticaria pigmentosa.

My baby boy was diagnosed recently at about three-months old. Before his two-month well-check I noticed he had a red spot on his arm and a couple other places. I asked the pediatrician about it at the well-check. At that point she said she thought it was a newborn rash, but to call her if it wasn't gone in two weeks.

During those two weeks he continued to get a few more spots and the original spot (as well as one on his leg) was bigger and looked a bit blistery. So I called and the pediatrician got us in that afternoon. She looked and couldn't identify the spots so she told me she was going to set up an appointment with the dermatologist.

She came back to the room about 10 minutes later and had an appointment set up for us two days later. Usually it takes 6-8 months to get into this dermatologist, especially as a new patient. I was happy he got in so soon.

At the dermatology appointment, the doctor scratched one of the spots and it didn't react much. I now know he was looking for Darier's sign. He commented that one spot on my son's face looked very yellow. When he was done with examining the baby the dermatologist told me he wasn't positive what my son had, but that it may be juvenile xanthogranuloma. He wanted to biopsy one of the spots to find out for sure. I had a feeling a biopsy would happen at the appointment so I was glad to have my husband with us for the procedure.

We waited for more than two weeks to get the results back. The dermatologist called me himself and spent about 20 minutes on the phone with me to tell me about how to proceed with the diagnosis of urticaria pigmentosa. At this time he said he didn't see a reason to treat my baby orally but he did prescribe a cortisone cream to apply to each spot once per day for a month.

We go back for a checkup with the dermatologist on Tuesday. Baby has continued to get more spots almost every day. I don't know how severe his case is though. Hopefully we will learn more at the checkup.

Baby also has his 4-month well-check on Tuesday. I am hoping the vaccinations don't cause a flare-up.

I do have some questions. If anyone can help I'd be grateful.
1. Is it dangerous for my son (since I breastfeed him) if I take ibuprofen for my pain?
2. Has anyone ever given antihistamines to an infant for UP?
3. Do any of the spots ever go away or do they stay for good once they appear?
4. Is it possible to tell if a baby is agitated from itchy hives?

I'm sure I have a hundred more questions, but this is what comes to mind right now. I'm still processing what is going on. I don't know a lot about it and that makes me a bit worrisome for my baby's comfort and future.

Thanks for reading.
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Starflower
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Re: infant with urticaria pigmentosa
Reply #1 - 04/22/12 at 02:20:54
 
Welcome to the group!

Although I haven't dealt with UP or a mast cell disorder in children (I'm the one with the disorder), I am mom... I can empathize!

To answer a couple of your questions...

Quote:
1. Is it dangerous for my son (since I breastfeed him) if I take ibuprofen for my pain?

Personally, I wouldn't... especially if Tylenol works for you.  Some people with mast cell disorders can take NSAIDs, but some can't.  You're right to ask this question since just about everything going through your body gets into your milk.

Quote:
3. Do any of the spots ever go away or do they stay for good once they appear?

Sometimes, with kids they do go away!  I think if it's going to happen they'll start to fade away around puberty.

Quote:
4. Is it possible to tell if a baby is agitated from itchy hives?

I'm surprised that the dermatologist didn't mention benadryl cream.  It's much safer for long-term use than cortisone cream.  You could try that and see if it makes any difference.  Just don't use too much... it soaks into the skin, and some people get sleepy from it.

Heather
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Re: infant with urticaria pigmentosa
Reply #2 - 04/22/12 at 03:44:55
 
Thank you for the reply Heather! I'll ask about the benadryl cream at our checkup.

I thought of another question. Do you think it's ok for me to use an amber teething necklace for my baby? The amber resin in the beads goes into the skin from the body's warmth. I would think the anti-inflammatory properties of the amber wouldn't be an issue like they are with NSAIDS, but I wanted to see if anyone knew.

The little guy is happy almost all of the time, but when he gets fussy I want to be able to read his mind to know if the issue is teething pain, itchy hives, gas bubbles, etc. I am very thankful that I can soothe him though.
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missybean
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Re: infant with urticaria pigmentosa
Reply #3 - 05/03/12 at 17:48:45
 
You know I break up my kids vaccinations, I do 2 at a time. I discussed my concerns with my doctor they are totally on board with it.
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