Hi Tijana
Its wonderful to meet you and your tiny son Give yourself a pat on the back... and realize you did a GREAT job getting the right diagnosis so quickly. I know, as a Mother,,, it hurts when our children suffer and we cant seem to help it.. we will help you, I promise...
First thing is.. if he is still flushing, he needs one of his meds increased or another one added to it. Flushing means he is reacting and too close to having those mast cells misbehave. Call his doctor and see what he think about which med should be increased or added.

Next thing... I want you to start keep a diary of what he eats how he reacts hat his activity level is--every day. That will show you patterns in the long run to what he is reacting to.. I also want you to read about low histamine diet.  He wont react to all of those but for the time being, cut all of those out until he is more stable with his meds and reactions.

The good things is this... most children grow OUT of having mastocytosis around puberty and odds are he will. Until then I have no doubt he will be ok.. he has a wonderful Mother watching over him
Hugs,
Ramona

Dear Ramona, thanks for your advice   ... mastokid the first page you've visited, the only thing that I still have not registered, I have to find someone who has paypal:), in order to obtain more information. Janu I just started to introduce food, until now we try a food that is rich in histamine (carrots, apples, potatoes, pear, peach), a doctor we just mentioned shellfish, which of course he will not eat. Days of our standing banana porridge, who can not seem to try, because I'm afraid of his reaction. I do not know whether all react to all foods, with histamine or is this individual? Because so many foods rich in histamine   ...

Hi Tijana,

Welcome to our group!   I hope we can help you!!   We have some moms here, and we can help you!  You don't have to join the mastokids site.  You're right, you have to pay to be a part there but not here and we can help you too.  

Also, there is a European mastocytosis support community and I've gotten a couple of names for you that might help.  I live in Brazil and know how hard it is to find help and doctors who know the disease, so please don't leave us, we can indeed help you for we patients know the disease and how it works often better than our own doctors do.  We can give you information and understanding that will help you understand your baby boy and keep him safe.

Also, if you are interested, I do know that Dr. Luis Escribano, who is a major researcher.  He enlists children around the world for his studies.  He is in Spain.  You can write to Dr. Escribano and perhaps he may know of a doctor there who can help you.  Perhaps Dr. Akin also knows of one - I will ask him.

Here is the name of the website:  European Mastocytosis Support Network.    http://www.mastocytosis.eu/

There are two pages which may be of a help for you, the one for the Slovenia group:  http://www.mastocytosis.eu/countries/slovenia.php
and the other for the Czech group:
http://www.mastocytosis.eu/countries/czech.php

If you will notice Tijana, on the Czech group are the Mastocytosis medical protocols of Dr. Escribano.  If these are in your language, then print them off for your doctors to use when they have to do anything with your son.  This will help to protect him.  

There is also a listing of medications, etc, that should be avoided.  Print this out as well, for it will help you.  

Tijana, if you want to speak with Dr. Escribano of Spain, let me know.  Send me a PM and I'll give you his email address.

I hope this help!

Lisa