Wednesday, February 5, 2014

Rare Disease Day is Coming Up!


Rare Disease Day was established to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

Help me spread awareness about mastocytosis so maybe one day there will be a cure for it!  Go ahead and share this little blog post, pin it, share it on facebook, do whatever you can to help spread the word!



 Often times when we visit with doctors (especially those outside our usual visits) we are more knowledgeable about Titan's disease than they are.  It's very nerve racking to think they don't know what to do to help you! Often times I have to go in prepared and have a plan I'd like to try since they don't have a clue about triggers and what they do to his body.  I'm finding with this disease you always have to be prepared!

Rare Disease Day is February 28th so let's get this thing rolling and get people to notice Mastocytosis so maybe one day we can find a cure!



Thanks!
-erika

Tuesday, February 4, 2014

Snow Day!

  This winter has been full of snow days for us!  Around here snow days are fun days because daddy is a teacher/coach so we get the day off!  Yesterday we made sure to take some time and capture our fun play day!

We started off with this tiny little hill.....
Then decided it would be more fun to body sled.....
Little lady got her turn sledding too

 
Although she kinda enjoyed being cute better     

Little Man wanted to build a snowman so badly!  That's all he talked about coming home Sunday evening. We soon realized the snow wasn't really quite wet enough, that's when he decided it would be more fun just to wreck all our work.
 
 

After Titan quit on us we continued at our snowman attempt
 

This would be our result....
 

He thought throwing snowballs would be more fun
 

When dad gave him a snowball he got that look in his eyes like "mom this one is for you!"
 

Again...
 

And again...
 

Acadia tried to make herself some snowballs too
I'm pretty sure these are her "here's to you mom" eyes too!
Here's dad trying to teach her how to make a snow angel while she's clearly not happy about it
 

Titan figured it out



Somewhere along the line Titan thought it would be fun to be buried in snow, I'm sure dad thought that was fun too!


 





Hopefully if you got snow too you spent a little time outside having fun in it!  I'm grateful I have my little family and even more grateful that we can have little moments like this to cherish forever.

Enjoy!
-erika 


 





Monday, February 3, 2014

Found a Few More Common Triggers That Effect Us

After I had posted my brief findings of the cold medicines we were taking a fellow masto mom contacted me about a post on facebook I made about milk, it totally continued to us talking about our kiddos.  She directed me to mastokids.org to a list with Common Mast Cell Degranulation Triggers.

As stated in my earlier post I was giving him over the counter cold medicine for his little cough at night and other yucky congested symptoms.  That's when I read that Dextromethorphan: found in cough suppressant medications is a possible trigger. Great.  So no more cough suppressants at all even without alcohol.

Another thing I noticed that may have been causing our breakouts all week was Thiamine (vitamin B6):  found in vitamin supplements.  I have been giving him those gummy multi vitamins daily and pretty regularly the same week I noticed frequent breakouts.  Since I've found this info I've stopped giving them to him and the breakouts have decreased greatly.  I'm not sure if there's a vitamin supplement out there without that vitamin but if I find out I'll certainly make a blog post about it.


I'm adding screenshots of the triggers to avoid so that I can pin them to my Mastocytosis Board on Pinterest.







Enjoy!
-erika

Saturday, February 1, 2014

Another Sale to Share!

I opened my email to find Mpix was offering 25% off canvas gallery wraps! 

Now through February 5th, receive 25% off Gallery Wraps with promo code WRAPIT14. From your life to your walls, create a beautiful wall display for your home in a matter of minutes.
Our Gallery Wraps are handcrafted and wrapped around a wooden stretcher frame for a timeless decoration piece. Big or small, this sale applies to all sizes.
 

Just doing my part to share the wealth!

Enjoy!
-erika

Friday, January 31, 2014

I need help deciding on a new blog header!


So I've come up with both of these blog headers but I need some help getting things updated around here!  This is my current blog header which I would just swap out old photos for new ones and also change Dotson's to Dotsons.  


 

Or my other option is this:
 

I'm curious to hear your thoughts!  Please leave a comment with your opinion!

Enjoy!
-erika

Thursday, January 30, 2014

Drugs to Avoid with Mastocytosis

This is a follow up post to my post yesterday about Titan's recent breakouts.   I had an experience at the doctor that made me want to check the ingredients to some cold and cough medicines we've been giving him lately.  These are the two medicines in question, an equate children's multi-symptom cold relief and Delsum Children's Night Time Cough & Cold. 





I looked at the The Mastocytosis Society's page for the ER and what drugs to administer with caution.  Alcohol solutions were on that list.


After looking at the ingredients on these two meds I noticed Sorbitol and Malitol both of which are sugar alcohols.  I'm not real sure if that's the same thing as an "alcohol solution" but we are going to stop using them just in case.  Besides from what I understand children under 6 shouldn't be taking this medicine anyways.  We will use this alcohol free version of Delsym instead.  This was originally what our pediatrician prescribed a few years ago when Titan was little.  Somehow letting husband man wander in the store to pick up medicine these other few have made it into our cupboards.



*UPDATE:  I wanted to add this update that I found in my search about cough suppressants.  In a recent post I described the triggers in these cough suppressants to avoid as I found from a list of common mast cell granulation triggers.  If you are a masto momma you definitely need to have this list printed out and placed in a bag for your child to have on hand at all times (or at least have access to this webpage when you need help).

 After just going to their website I found an interesting way to check out the level of cough and cold symptoms in my area.  Just enter your zip code and it tells you the current cough levels, right now our area is very high, which is not surprising with all this flu going around!


Enjoy!
-erika

Wednesday, January 29, 2014

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


Last Day for Print Sale!

25% Off Prints Sale Ends Tonight!

As a mom, a project lifer, and a photographer I always love seeing these sorts of promotions popping up in my inbox!  25% off is a pretty good deal considering without the discount I probably would have purchased them anyways so technically I'll just be getting more prints right?!?!?!  :)  I also use Dropbox to store all my personal photos and a few photography project online as a double backup just so I feel extra safe about the security of my family memories!  I'm sharing this because if you sign up here:  https://db.tt/ywWxARIE  I get 1GB and my friend gets 500MB of bonus space for every friend who joins and installs Dropbox on their computer!  It's totally free to sign up and there's lot of ways to add bonus space to your account!  I still haven't paid a dime and I think I'm currently at 108GB!

Enter the promo code PRINTS14 by 11:59 p.m. (Central) tonight before this deal rides off into the sunset. Upload your favorite snapshots and transform them into timeless photo prints today.

Enjoy!
-erika

Tuesday, January 28, 2014

Sorry for the absence!

Wow I just checked that last time I wrote a blog post and it's seriously been since September of 2012......shame shame shame!  I have really just been super busy being a mom and trying to run my wedding photography business that this little happening spot in blog world became a bit neglected.  I'm here to stay now (or at least that's my goal....you know it's the new year right and to top it off still January!).  I've been throwing around ideas of things I'd like to continue blogging about and the talents that are at my fingertips.  I'm constantly searching Pinterest for new ideas for Primary so I'm thinking about posting and sharing everything I end up creating.  My son still has Mastocytosis so I can always be updating other worried mommas about that!  I'm a wedding and portrait photographer so maybe I can help someone out there take better photos of their kids!  We are expecting another little girl to arrive at the end of April too so I'm sure I could share tips and tricks on being a mommy of three! I've also been throwing around the idea of adding a neighbor friend down the street into my blogging mix!  She's totally into living off the land with her gardening and chickens!  She's super crafty and loves to help do projects to their home they've built!  She's pretty cool and I think you guys would love her! 

For now I'll share my most recent photos with you!  Another one of my creative neighbor friends (which is weird because we live in the country) is also a professional portrait photographer, she's very awesome and willing to trade out family pictures with me pretty frequently, took on my last minute request to have my family and myself photographed at the last minute for my birthday!








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