Mastocytosis


My son began his diagnoses with Masto when he was about 3 months old.  The first thing they told me was not to google it, so that's obviously the first thing I did.....I should have listened.....but you'll probably google it now too if you haven't already.  I created this page so hopefully if you've found my blog by googling it you won't be so worried, I was super worried, like stay up and cry every night worried.  Then I found a great doctor, Dr. Kincannon, at the Arkansas Children's Hospital that happens to be our only pediatric dermatologist in the entire state.  I read all kinds of stuff about masto, I was worried my kid wasn't going to be able to sweat, get hot, play outside, play sports, basically do anything!  As a first time mom of a baby boy that news was devastating,  however Dr. Kincannon quickly rearranged our thinking.  He basically told us "he's got a skin disease no big deal and he can't live in a bubble".  Ok I can totally handle that! Here's our story about Our Journey With Pediatric Mastocytosis.

*If you'd like to learn about it here's some scientific info below -------> otherwise skip to the photos and I give my recap.

Mastocytosis has been defined in the literature as an abnormal accumulation of tissue mast cells in one or more organ systems. Broadly separated into two categories - cutaneous mastocytosis (CM) and systemic mastocytosis (SM), the disease occurs in both children and adults.  CM is a benign skin disease representing the majority of pediatric cases.
CM is diagnosed by the presence of typical skin lesions and a positive skin biopsy demonstrating characteristic clusters of mast cells. The preferred method of diagnosing is via bone marrow biopsy. The World Health Organization (WHO) has established criteria for diagnosing SM, restated below: - See more at: http://tmsforacure.org/patients/mastocytosis_explained_2.php#sthash.O40LoaUR.dpuf
CM is a benign skin disease representing the majority of pediatric cases. It often resolves during puberty and is not associated with systemic involvement, but because only a small subgroup of people with CM display a KIT mutation, not much is known about the factors that contribute to the accumulation of mast cells in the skin. - See more at: http://tmsforacure.org/patients/mastocytosis_explained_1.php#sthash.EKwF9toL.dpuf
CM is a benign skin disease representing the majority of pediatric cases. It often resolves during puberty and is not associated with systemic involvement, but because only a small subgroup of people with CM display a KIT mutation, not much is known about the factors that contribute to the accumulation of mast cells in the skin. - See more at: http://tmsforacure.org/patients/mastocytosis_explained_1.php#sthash.EKwF9toL.dpuf
CM is a benign skin disease representing the majority of pediatric cases. It often resolves during puberty and is not associated with systemic involvement, but because only a small subgroup of people with CM display a KIT mutation, not much is known about the factors that contribute to the accumulation of mast cells in the skin. - See more at: http://tmsforacure.org/patients/mastocytosis_explained_1.php#sthash.EKwF9toL.dpuf
CM is a benign skin disease representing the majority of pediatric cases. It often resolves during puberty and is not associated with systemic involvement, but because only a small subgroup of people with CM display a KIT mutation, not much is known about the factors that contribute to the accumulation of mast cells in the skin. - See more at: http://tmsforacure.org/patients/mastocytosis_explained_1.php#sthash.EKwF9toL.dpuf


We began our life as a family of three just like everyone else!  So excited to welcome our newest family member!  Looking back now I can see how red he looked but at the time I was a new mom and had no idea he didn't look like a healthy baby boy!


Titan's first few weeks of life were filled with LOTS and I mean LOTS of crying!  I just thought it was totally normal and often wondered why people had so many kids!  If he was awake and not eating he was usually crying.  Looking back sometimes I feel like a bad mom, I was so stressed out and sleep deprived. I would get so mad at him and very short tempered with my husband.  I would bounce on an exercise ball for hours in the living room just pleading with him stop crying! Everyone thought he had colic, I just knew it wasn't colic, there was something wrong with him but I didn't know what just yet. 


We experienced our first breakout when he was just a month old.  His whole body broke out in hives.  Our pediatric clinic was closed already (it was about 8pm) so we called the nurse hotline on our insurance card.  We were advised it was probably a reaction to something his skin came into contact with so we decided to give him a bath, which probably just made everything worse considering heat is a trigger for these masto kids!  We had already been using Dreft for baby clothes, but we were super admit afterwards that ALL his clothes were washed in it, nothing that was missed got tossed into the wash with our clothes! 


The next breakout in hives came at 2 months old.  I happened this time to be in town with my mom so we took a quick trip in to the pediatric clinic and this is what he looked like.  I showed Dr. Silvey (who we really like) the images above and he was able to examine his skin during a reaction.  He told us he possibly had a milk allergy and he wanted to set us up with a allergist.  That's when we cut off all milk products.  I was still trying to nurse and I eliminated all milk from my diet, even while eating out I would order things cooked without butter.


Just a few snapshots from home, his skin was so blotchy! 

 
He started to develop whelps about 3 months old when exposed to triggers.  These pictures were taken a few days following Christmas. We learned quickly that fragrance was a trigger after we let a lady at church hold him.  This caused more moments of feeling bad since I wouldn't let anyone but family hold him in fear of another reaction.  My family started wearing certain clothes to church and went without perfume so they would be able to hold him!


On the 31st of December we head for a drive out to Angelfire, New Mexico.  That's a pretty long drive for us.  I believe it took two good days of driving.  As we traveled there we didn't have much issues but when we arrived at our hotel in New Mexico is when we started noticing problems.  These blisters were developing on his little booty.  At this point in time we had visited with the allergist and had his blood drawn as she suspected he could have mastocytosis.  While in New Mexico I was calling everyday checking in to see if they had any results back yet.  As we drove back home our trip was miserable.  His booty just got worse and worse!  At this point we had given cloth diapers a try thinking he was allergic to the lining in disposable ones.  He was so miserable we let TW hold him in his lap down the highway with a towel in his lap just to get him off his booty.  This is when we learned that pressure was also a trigger.  I'm sure all that time sitting in his carseat certainly didn't help that!


Our allergist finally called to tell us his results came back in and that his tryptase levels were 105 which is outrageous!  A normal person's ranges up to 10.  They scheduled us with a trip to visit a dermatologist for a skin biopsy.  The skin biopsy would confirm everyone's guess that it was mastocytosis.  This is when we learned stress is a trigger.  The first image was his biopsy site and the following were what happened the next few days!  He just broke out worse and worse.  The hives on the back of his head, the lump back there too, and the colonies on his neck!  We were told we should consider moving next to the hospital at this point and the allergist that we visited gave us epinephrine just in case and made us practice injecting each other (he was too little for an epi pen yet so we carried around vials and syringes for a brief period).


These images were taken days after the biopsy too, at night.  Water blisters, hives, and colonies.


This was the following morning just getting worse and worse and developing more and more!


 After our biopsy was returned we got the news that it was confirmed mastocytosis.  At this point they scheduled us up with an appointment to finally meet Dr. Kincannon, the only pediatric dermatologist in the entire state.  We had been through a whirlwind of emotions at this point and meeting with him really helped calm our nerves and get us on the right track.  We were started on several antihistamines and steroid cream.  He improved quickly.


Here he is on his first vacation to Hawaii, he's about 5 months old.  My dad lives there so I took little man to visit while his seat was still free!  As you can see here the meds he takes daily really helped his skin! 


 I took these pictures when he was about 8 months old to show what his reactions look like with his daily meds.  Usually he looks pretty clear but sometimes something will cause him to have a reaction.  The left is his blotchy, red and I'm sure itchy skin.  The photos on the right are an hour later after I applied the steroid cream to his entire body.  Much better!!!

Now life is all about maintaining those daily doses of medicine, avoiding his triggers, and treating his periodic reactions.  There's no schedule for the breakouts, he could be fine for months then breakout three days in a row, it's pretty unpredictable.

If you've found yourself here because your child has similar looking issues I encourage you to check out this website and read EVERYTHING!  Also see a doctor so you can get on the track for treatment!

http://www.tmsforacure.org/patients/patients.php

If you are a parent of a child with mastocytosis please please please make sure you have the Emergency Room Information sheet printed out and in a bag for your child everywhere he or she goes!

http://tmsforacure.org/patients/important_documents_1.php
















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