I've been debating on what to blog about other than my sweet little family for quite some time now. While I'm interested in decorating and crafting things up for my home, that's just not really something I feel I can consistently blog about. I don't cook at all and in fact we don't even have a stove right now and we moved in almost 2 months ago!
I do have a son with Mastocytosis, I've blogged about him several times before and while he's doing much better than he was when we were in the stages of finding out what was going on with our little guy there's still lots of mommies that are just getting that diagnosis themselves and having those feelings of anxiety, fear, and likely some guilt (even though they shouldn't because it's totally nothing they did! -they just got lucky!)
Sunday I didn't get to Titan's meds before church,
he's currently taking:
1/2 tsp Zantac
1/2 tsp Zyrtec
1/2 tsp Hydroxyzine
Triamcinolone cream as needed for itching and blisters
EpiPen JR for emergencies
and purposely didn't give him his meds at bedtime since we knew we had a Children's visit Monday at 1pm. I wanted Dr. Kincannon to see what his body looks like without any medicine for a short period of time. Well at about midnight on Sunday, Titan woke up and found his way into our bed. He was kicking and crying and scratching at his feet and behind his head. I just knew he was so itchy from not having his medicine. I got up and rubbed anti-itch cream all over him, that provided instant relief but not long enough for his little body to relax and get some rest. So I buckled and gave him some Zyrtec and Tylenol thinking those were both over the counter meds and we were going to ask if he thought Titan would be able to get off any of his medicines. In about 30 minutes he was asleep again! :) Happy mommy and daddy!
Since school started on Monday for everyone else my mom came along with us since traveling 6 hours round trip in a car with an almost 2 year old and an almost 3 month old didn't sound possible alone! The drive up there went pretty good, Acadia didn't wake up the entire time so we never stopped! The trip back however we made 4 stops!
As we arrived at Children's we did the usual feeding and changing diapers and then sat and patiently waited for Titan's name to be called. I had my list of questions written down since I knew this Dr. was pretty quick and usually dominates conversation. (not bad bc I love him, just prepared that's all!)
*Will he be able to get off of any medicines?
*When do you think he'll outgrow it?
*Does Acadia show any signs of having it?
*Does he really need an EpiPen?
*How does his skin look after no meds since Saturday night?
*Do the spots on his neck look like excema (they've been there for many many months -possibly more than 6!)
Dr. looks at him and says does he think he'll outgrow it by two, no, but maybe by school age! YAY! But then again that little voice in the back of my head says "no one really knows if or when".....
And obviously that answered the next question of getting off any meds, since obviously to keep Titan comfortable he still needs them (Sunday night was a true testament of that!)
Acadia looks like a completely normal kid and we haven't had any concerns about her. I think as a parent of a masto kid though you just always wonder if you other kids will have it too. Remember it's not contagious and not genetic.....so "no" was his simple answer. I've heard that there's only two families that have more than one kid with masto. (If I'm wrong on this I would love to hear the actual number).
The EpiPen is apparently to make us moms and dads feel better, a coat of protection if you will. He said he hasn't had any masto patients that have had to use it (remember he's the only pediatric derm in the state) but that it's prescribed to help put everyone at ease. It's possible Titan could swell up, get really red, break out in hives, be really itchy, and start wheezing (which for a masto kid all of those except wheezing are totally normal) but the loss of breath isn't usually a symptom of masto according to our doc.
I'll have to get some recent pictures of his spots but this one cluster about on his collarbone has been there for months and months. With Titan's diagnosis of Diffuse Cutaneous Masto he usually just gets hives and blisters whereas from my observations Cutaneous Masto is more about having regular spots all the time that are similar to chickenpox. So with that said Titan's seem to come and go quite quickly. Our regular pediatrician mentioned it could be excema and to keep applying the Triamcinolone cream to it. Dr. Kincannon didn't seem worried about it and said "these kids have spots, it's probably just masto".
Before we left he asked if we wanted to come back in 6 months or a year (it has been a year since we were there last), I mentioned I didn't really know and he told me he felt like a year was too long for ME! ha ha I'll admit around the house and in everyday life, I'm totally fine with it and I let Titan be a regular kid as much as possible but come doctor visit mode I'm a completely different mom! I'm totally organized, I've got all my questions, and I'm crazy prepared! When your doc is 3 hours away you better believe you are going to make the entire 15 minutes worth it!!!!
I'd love to hear from more of you masto moms! It's great to have this community! I love hearing your lovely comments about your kiddos! I just hope my blog can be some sort of help to someone just finding out about their masto kid or even just someone trying to cope with it on a daily basis! So I'll be trying to blog regularly about my masto kid! Please share this if you know someone struggling with this rare disease!
Here's a list of all my masto posts!
Getting Diagnosed - January 2011
First Children's Visit - January 2011
Shots- March 2011
Ordered Masto Shirts - March 2011
8 Month Old Update - May 2011
10 Month Old Update - July 2011
1st Birthday - September 2011
Here's a pretty recent shot of what Titan looks like right now! No masto spots! Yay!