A Worried Mom and a Healthy Baby

Every once in a while I get random emails from mothers who have found my blog post about mastocytosis. While I am always excited to meet more mom's who are dealing with this same thing I am not excited that there's so many of us left to battle all these thoughts rumbling around in our heads!

Most days I go about my daily business and the thought that my child has a disease is in the back of my mind. Then there are the days that I get sucked in to the internet and read WAY too much! I get on pages like The Mastocytosis Society on FB and totally get freaked out and start thinking about all the what if's and then usually end up with several snotty tissues by the end of the night. Tonight was one of those nights.

I'm not going to lie but sometimes I get a little overwhelmed that our child has this awful disease and I just start feeling awful thoughts about it developing into Systemic Masto (which involves your internal organs) and having much worse effects such as nausea and vomiting, to name a few. Then to top it off I read, tonight, that people have developed leukemia from this disease! Talk about instant sob mode! Geeesh.

But I'm here to report good news tonight and take that step forward in the right direction. A few weeks ago we visited Children's again (here's the first blog post about our Children's trip) and Titan had some blood drawn to send off for lab work. I asked if they would let me know what his Tryptase levels were. If you didn't know, you and me have levels below 20, the first time they were taken his were 105!!!!! When I asked them to inform me I was quickly reminded by the doctor that he didn't expect them to drop much but they would still let me know. As you can imagine I was smiling from ear to ear and wanted to shout out the news at the wedding I was shooting for my cousin in Utah last weekend when I got a phone call that his Tryptase levels were down to 48!!! I was like a little kid that just got a new puppy! Such joy I found in hearing these silly numbers. I'll be honest I'm not real sure what this actually means, but in my heart they mean he's doing much better! All I know about Tryptase is that by the high level they were able to rule out allergies as the culprit of all those hives and blisters, which lead us to the next step which was a skin biopsy that revealed this disease.

Tuesday was Titan's first time to experience grass. I know this seems silly and not super important but I've been dying to put him in it. I heard one of our doctors mention that a patient was complaining about their child breaking out in blisters when he played in the grass (this lead to finding out the child had masto and this was one of his triggers). We were in town so I decided that was as good of a place as any if he did end up having a reaction from the grass at least we were close to a hospital! Grass experience went really well though! As you can see he really likes it! He kept pulling it and trying to eat it!!! ha ha

On a side note.....we ran out of medicine for him Monday morning and I was unable to pick it up (due to insurance reasons) on Monday evening, meaning he skipped a dose. Then he missed a dose in the morning before we could get up to the pharmacy. This is an example of what his skin does in a short period of time!!! Thankfully this isn't that bad and it soon got better in the afternoon when we could get his meds.

Right now he takes:

Morning- 1/2 tsp. Zantac

- 1/2 tsp. Zyrtec

- rub triamcinolone cream all over him after his bath

Evening - 1/2 tsp. Zantac

- 1/2 tsp. Zyrtec

- 1/2 tsp. Hydroxyzine

- rub triamcinolone cream all over him after his bath

(Epinephrine as needed in emergency)

*He was on Singular as well (which we would give to him in powder form in his bottle in the morning) but he has since been taken off this medicine. Honestly I didn't really see a change.

If you have Masto or a child with Masto I would love to hear from you or even if you just want to be a cheerleader for Titan we'd like to hear from you too!