Mastocytosis Update

Titan is now three and we've had our ups and downs with this skin disease!  Which if you are new to my family you can read about here.  Hopefully my posts will help someone out there!

A few days ago I was informed that my kids had been exposed to some other kids who were tested positive for the flu.  About two months ago during their regular check ups we went ahead and got them the flu shot while they were getting regular vaccinations so I wasn't totally worried about it at the time.  Fast forward to the middle of that night and Titan found his way to our bed red, itchy, and super hot!  My first instinct was that he was having a usual reaction so that's how I treated it.  We took more antihistamines and stripped his pj's off and only let him cover up with a sheet.

When morning finally rolled around I started wondering if he had a fever as a symptom of the flu.  I took his temp and it was 97.9 so I was no longer worried.  I called up his daycare (they go two days a week) and our teacher told us he had a mild fever because you are supposed to add a degree to under arm readings.  Also said that two kids were tested positive for flu and both were sent home with low grade fevers.  Now I started to worry.  I called up their pediatric clinic just to get scheduled for a flu test.  During our visit the doctor that we saw asked about their coughs and how long they had lasted.  I told him about a month or so.  He then asked if I wanted to give them a prescription cough syrup, he then said it had codeine in it.  That tripped my memory and I immediately said no thank you, I don't think he can have that.  I had just recently read the list of things to avoid at our last Children's Hospital visit a few weeks ago.  We find that pretty often we are more experienced with masto than most doctors.  He had no idea he was about to give us medicine that could trigger issues for Titan.  You've seriously got to be on top of your game!





Here's his skin a few nights ago....now I'm getting to my whole story about the flu test trip (which was negative by the way-yay!).  I mentioned my kids have had a cough for the last few months.  Well my husband likes to give him a cough and cold medicine, me well I think he gets enough so I like to avoid meds, but that's pretty typical of us as individuals too.  These pictures are of Sunday night.  He was in our bed Monday night and Tuesday night with red, hot, itchy skin.  I asked husband man this morning if he had been giving him that cold and cough medicine.  Sure enough he had it last night.  I'm wondering if that's been triggering some of these reactions?  The meds the doctor wanted to prescribe us had codeine so I'm curious if the one we've been using has something on the list we are supposed to avoid.  I'm going to have to get all researchy I guess!  I'll let you know what I find out!

Enjoy!
-erika


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