Maiysa,

Although it makes sense that we need to avoid our triggers in order to keep our disease calmer, there is nothing that proves that the disease will not progress by doing so.  

For those who are non-clonal MCAS, although the disease is genetic, supposedly the issue here is not the progression of the proliferation of the MCs, but that of the release of the mediators and the damage they can do.  

Fo those of us who are clonal, then there are those two issues to have to deal with that of the proliferation and the mediator release damage.  

However, for those who are non-clonal MCAS, there are no studies as yet, except for the one study on the liver problems, which even say what kind of damage the MC mediators are causing.   And for those who are clonal, there are no studies which tie the activity with the quantity of proliferation.  

So, it is all unknown territory, Maiysa!   You must not torture yourself with this.   What has happened, was going to happen anyway for there is no way to know what could or could not be, what is preventable versus inevitable.   We can all go down this path called, "If I´d only known", but it´s absolutely 100% FRUITLESS and will not do anything but create grief and sadness for you.  And even if you could blame yourself or the doctors, it´s to no avail and will only cause you pain.  So, stop, please, torturing yourself over your son´s situation.  I understand your feelings, but you must not cause yourself such psychological harm for it won´t change a single thing.

How can I say this?   Because we´re finding masto in my children and I too can say this exact thing of, "If only Id known!"    What matters is NOW!!!

NOW that I know, I have changed everything from the way I look at my children when they get red or colds or things like headache, to the way I deal with those issues.   NOW, we keep in mind masto with everything that goes on in their lives be it activities with school or summer vacation, or be it foods and medications.  NOW, I´ve given instructions as to what to do if they feel bad.  NOW, I´m talking with their doctors and trying to help them understand more about the disease.  

So, although we don´t  yet know where this disease will go or how it will affect our children, we are not helpless!   There is something we can do NOW and that´s teach them and their doctors how to give them the best care possible.


Lisa


btw - one of my sons was diagnosed with proctitis and was bleeding from his rectum at age 19.  This was the ONLY sign of anything wrong.  Yet, he has responded beautifully to the treatment for the proctitis and is now taking Ketotifen every day.  He doesn´t need any other treatment except occaisional omeprazol when he gets gastritis.

Lisa always has GREAT info and she explains things so well My brain fog comes and goes--and when it comes, boy Im a bit of a moron LOL.

You know they told us for years that Masto didnt run in families--well our experience has been very different and finally NIH is getting into the picture and studying family lines with Mast Cell problems--and finding some really obvious Familial connections.

So, we do what we can to educate our loved ones about ourselves and the fact that it IS turning up in families, to keep an open eye to possibilities and start early treatment for those who have bad tempered mast cells

My own family is an active case in mast cell problems. I have one sister with Fibro, Diabetes type2, degenerative arthritis.

The other sister has Myelomas (3 operations to removes suspicious areas) she also has what she terms "IB" (we know what it really is dont we??) She also has TMJ and Diabetes type2.

My Grandson has multiple allergies, chronic urticaria where he rips into his skin itching,  chronic constipation--(he has been hospitalized for no bowel movement in 14 days and must take Miralax now), They told his Mom that he has abnormal liver enzymes and called it auto immune hepatitis--then the enzymes get better. He takes Benadryl usually twice a day to stop itching and making his legs look horrible.

My Father called me recently to tell me he has been in the hospital 4 times now with sudden anaphylaxis, he has no idea what caused it but he was in full blown shock each time.

Now my 25 year old son is complaining of "terrible stomach ulcers" where he has nausea, vomiting, weight loss and pain. He looks horrible, I was so upset, He had rings under his eyes, it affected his sleep and he just begged his Nurse Mom to "do something". I didnt have the heart to tell him it wasnt an ulcer.. I put him on Prilosec once a day at night, Claritan once a day, Benadryl at night and Zantac 150 twice a day (all over the counter meds, cause he refused to go to the Dr). . He called me 2 weeks later, and said. "Mom I feel much much better!". I saw him this last weekend, all rings under his eyes were gone, he was gaining weight, keeping his food down now. So its obvious to me its a mast cell problem.

My family doesnt want to hear it. Theyve seen me go into shock frequently and they just think that I am seeing monsters behind every tree.. I wish it was that simple.. But we all love our families and have to do what is right for them.

Lisa, Im praying for your family but I know it takes second place to the power of their Mom and how wonderful you are.

Maiysa, when you get that gut feeling and "know something", go with it..youre right and the Mama sense is a strong one.. Im keeping you and your family in my prayers and I know they are so lucky to have you!
Hugs
Ramona