Anyone heard of Mastocytosis?

mcgeeva

So DS #2 has had a spot on his back since birth that will not go away. So we took him to a dermatologist after his last pedi apt where they insisted we go have it looked at. After a month of putting a cream on it for what they thought was eczema, I went for a follow up today and they said it's not eczema but a Mastocytosis. Has anyone's kids had anything like this?? I was told to keep Benadryle on hand if he has an allergic reaction. Apparently foods, touch...pretty much anything can cause it to react and cause an allergic reaction all over the body. I am just curious how bad this is? The dermatologist wasn't too informative so now my next stop is the allergist in case I need an epi pen. 

Then I had to head to his weight check at the pedi office and he only gained half a pound in a month. He didn't grow any length wise either. We have added rice cereal to all BM bottles and tried to start foods. I go back in a month and if he doesn't gain anymore then we are going to try some medicines for reflux. Feeling blah. DS#1 was crying when I left daycare because he went to put his socks and shoes on and realized I wasn't taking him with us to the doctors. Between the two I feel defeated like im missing something. Thank god it's friday. Ready to go home and snuggle my boys.  

Hope everyone has a good weekend

TJ1979

I'm not familiar with that mcgeeva. I'm so sorry. I sounds like you are having a rough day. I'm curious about the suggestion to add rice cereal. It's not really high in calorie. Is it for the reflux? How old is he now? I'm on mobile.

kflynn81

***** LURKING****

I don't normally post when I'm lurking BUT.... I have a form mastocytosis and have had since birth. Sounds nearly exactly like what your LO has. I can answer any questions if you want   Send me a PM.... but obviously you can see I'm doing ok with it

luvboston

I have it if you have it as a child it goes away usually. Mastokids.org

Also it's a very serious disease depending on the type you need to see a specialist there are only two on the east coast I go to one Dr.richard horan and dr. Castells.

I have attacks that land me in the ER it sounds like your son does not. Usually kids have many spots that look like chicken pox are permanently all over there body. I take an h1 and h2 blocker to keep attacks at bay and an epipen. If I have surgery I have to be preloaded with Benadryl.

Did they do the triptase bloodwork? You can't diagnose without it.

mcgeeva

Hey ladies! Sorry long weekend and finally getting back on Thank you for responding! 

TJ1979 The rice cereal your right has zero nutrition but they think he has silent relux.  He's not gaining like he should so they think the rice cereal will help thicken the BM and lessen some of the spit up even though he still spits up. I feel rice cereal is tricky. On the BFding board people will say im killing my kid by giving him rice cereal but what else am I suppose to do?? They also told me to add olive oil to his food to up his caloric intake.

kflynn81 I will definitely be sending you a pm!

luvboston: No they didn't do bloodwork. They gave me a prescribed cream thinking it was eczema and when it didn't change in color or size or anything they brought in another doctor a month later and said this is what is it. Don't give him any of these list of foods for two years etc. But after reading about it friday afternoon I see there are two types - ones on internal organs or the ones on the skin. Obviously they wouldn't know if it's the ones on the organs without testing. So I think my plan of action is to get a second opinion? I went today for a biopsy at my dermo so I may just schedule an apt there with him. Do I insist on a blood test? My problem is they say DO NOT give these foods but other then that say it's not a big deal. If it's not then why would I avoid all these nutritious foods?  

 

TJ1979

Okay, I understand the rice cereal thing the way they suggested it.  But there is also evidence to show that this backfires, because their bellies get filled up with the rice and they actually eat less good calories.  I would really try to focus on getting him some good fat in his diet, like avocado, nut butters, and fatty fishes, if those foods are on his okay to eat list.
I don't know anything about that specific condition, but I would definitely look into a second opinion.  And really try to get more information.

ETA: Also I'm really sorry you're going through all this.  Big hugs!

mcgeeva

TJ1979 See that's the problem. I can't give him avacados, bananas, spinach, a bunch of fruits etc. All the things I would like to give him. Which then makes me worry about having low iron, protein etc. 

luvboston

What I think they gave you is a list if high histamine foods to avoid which makes sense on one hand however doesn't make sense if he doesn't have a problem with them. I would def get a second opinion. This disease is an orphan disease not many ppl really know about it. Also there is medicine cromyln soduim to deal with the histamines if that is his issue. Where do u live?

mcgeeva

luvboston Im in NOVA Va

TJ1979

omg mcgeeva, I'm going to be in Alexandria the first weekend in October.  Are you near there?

mcgeeva

TJ1979 yep! about 10 miles from me! You going for business? 

TJ1979

No. my B and SIL live there. 

mcgeeva

Oh nice! And your coming from texas right?? Good timing before it gets cold

TJ1979

Yep! It will be P and I. My first time leaving E.

mcgeeva

Sweeeet! How long are you staying??

TJ1979

We will really only be in Alexandria overnight.  We are driving to Philly in the morning.  If I were there longer, I would totally say we should meet up!

mcgeeva

Yes! Well if you ever come back again for longer do so! Especially since our lo's are close in age