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They both get both forms,four times a day

Vit d, vit c, iron, multi vit, neocate, Pepcid,Prevacid, singular, zertec,cromolyn sodium, Flovent, pulmicort, albutrol, epi, Benadryl as needed. Nothing new, and no new changes

Me too , it's so hard for them, hot days are the worse😣

Yup they both are, and gastrocrom ( cromolyn sodium)

Thank you☺

Yeah that's what I've heard that's why the boys Drs are trying to get them seen by him, I guess he will see them if they have a Dx of Masto and systemic symptoms. We'll see, I hope so or at least I hope he has some ideas for the boys.

Thank you!Docs are trying to get both boys into Dr Cem Akin, Masto specialist at Brigham woman's, he's supposed to be the best I guess.

Jake is on a histamine free, dairy free, gluten free diet since about nine months. He is negative for infections and parasites as well. Hopefully scopes will give more info/ answers. :o/

Thank you so much for your reply and links! I was thinking his illness had more to do with systemic Masto, I have a six year old boy with systemic Masto that is pretty sick as well, he also has autism and seizures both they believe caused by systemic mastocytosis. I think what threw me was the...

Hi there, I'm mom to Jake a very loving little 4yr old. Jake has had health issues since birth. A skin biopsy revealed Mastocytosis at age 9mo,asthma,gerd,sleep apnea,severe restless leg syndrome, disaccharide malabsorption, vit d def, and anemic. Poor growth, and belly pain and diarrhea daily...

Hi there, I'm mom to Jake a very loving little 4yr old. Jake has had health issues since birth. A skin biopsy revealed Mastocytosis at age 9mo,asthma,gerd,sleep apnea,severe restless leg syndrome, disaccharide malabsorption, vit d def, and anemic. Poor growth, and belly pain and diarrhea daily...

Hi there, I'm mom to Jake a very loving little 4yr old. Jake has had health issues since birth. A skin biopsy revealed Mastocytosis at age 9mo,asthma,gerd,sleep apnea,severe restless leg syndrome, disaccharide malabsorption, vit d def, and anemic. Poor growth, and belly pain and diarrhea daily...