Mastokids.Org

[FR Hello]

For those on the forum and not on email...

My son is 15 months with UP. We are in Northern California and have been so frustrated with the doctors at Kaiser. We finally got a referral to UCSF and had such a great first appointment.

We did not see Dr. Frieden like I had hoped, but had 4 doctors come talk to us. The appointment started at 1 and we left at 2:20. A lot of the time was spent waiting for them to converse, but they definitely took the time to listen and and help come up with a treatment plan. The moment they saw him, they said it looked like classic masto and they see quite a few patients with it. That made me feel good. They asked me a bunch of questions and asked me what I wanted from the visit and then said they were happy we were there and looked forward to working with us. What a change from my doctor's at Kaiser....

I was able to bring pictures of Liam's hive reactions. The doctor was surprised to see the hives rather than just the spots flaring up but said he just has hyper sensitive skin on top of the clumps of mast cells. The basic consensus was that he has a moderate case and should be on a daily dose of antihistamines. They prescribed Zyrtec in the morning, Zantac at night (to help with bloating and gas issues), and Atarax as a rescue drug if needed. And they are recommending we come back in 3 months to evaluate the effectiveness.

There is something so reasurring when you talk to someone who knows what they are talking about. The doctors even said that they just finished reviewing a mast cell article in their Jorunal club (assuming book club for doctors) because they have seen a rise in mast cell cases.

Liam also had a little spot on his foot that I didn't know what it was. I had assumed it was a wart but it had been there for about 2 months. I mentioned it and they recognized it as a calcium deposit caused from all of the heal sticks he went through in the NICU.

Anyway, if anyone on this list is in Northern California and looking for a knowledgeable doctor, I highly recommend UCSF Pediatric Dermatology department.

If you have any questions please feel free to email me at frankierae@gmail.com
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Cheers,

FR