Just wanted to give an update on my little man..now that I have answers

mcgeeva · October 2014

So all went great today at Children's Hospital! Apparently the doctor I saw learned from doctors that head the Mastocytosis foundation and worked at NIH. So she was 100% more knowledgeable then the three doctors I saw previously. She actually threw away the info I was given. None of the printouts they gave me were correct information. They do not grow out of the condition by two as I was told and there is no way to know what will trigger the spot to release the histamines. Hence no reason to limit food. She showed me other children she is treating and what their spots look like which one was identical to Carter's. Only one kid that was 4 was allergic to peanuts but she does not believe that is due to this. She said the only reaction these kids have is anaphylactic shock with this condition, so they brought in a nurse to show me the signs to look for and how to administer the epi pen and gave me an action plan. So I just need to go buy another box to carry two on me at all times. Only other thing I have to do is come in every 6 months from here on forever to have a blood test done to check his triphase levels (ignore my spelling). His are at a 4 which is really good. When it gets to 20 that is when the condition is systemic, which then you have to deal with bone marrow doctors and check liver enzymes etc. The only other time she steps in is if he ever needs surgery. She has to make sure no drugs are administered that are known to release the histamines which I guess there is a list. But until that point there is no reason to even worry about that. Other then that we were told no one is to touch the mast cells spots except a doctor. With all said this is definitely manageable if everyone that watches him knows the action plan

Well that is all I have. I hope everyone's having a good day!!!!

kmc84 · October 2014

I'm SO glad you got some good, solid answers! That's a lot to have on your mind, but it sounds like you have a great plan in place to keep Carter safe and healthy!

luvboston · October 2014

Glad you went and saw someone that seems to know what they are doing. However being someone that has this you do have to pay attention to what you eat if he is getting more spots then you know certain foods are causing a histamine reaction. For example I can't have eggs or spinach unless I am heavily medicated as it sets off my mast cells most of the year. And before surgery they always give Benadryl.

mcgeeva · October 2014

luvboston said:

Glad you went and saw someone that seems to know what they are doing. However being someone that has this you do have to pay attention to what you eat if he is getting more spots then you know certain foods are causing a histamine reaction. For example I can't have eggs or spinach unless I am heavily medicated as it sets off my mast cells most of the year. And before surgery they always give Benadryl.

Exactly! She just said we have to figure out what those triggers are since there really is no specific ones that affects everyone. So now that you know it's spinach and eggs you will take Benadryl if you know your going to eat it instead of avoiding it? Just curious. Because say it is spinach, should I 100% avoid or allow tiny bits to be ground in some food so he get's his vitamins or is that crazy?

Thanks guys! Definitely excited to fatten him up with food! Just going to go slowly

luvboston · October 2014

mcgeeva said:

luvboston said:

Glad you went and saw someone that seems to know what they are doing. However being someone that has this you do have to pay attention to what you eat if he is getting more spots then you know certain foods are causing a histamine reaction. For example I can't have eggs or spinach unless I am heavily medicated as it sets off my mast cells most of the year. And before surgery they always give Benadryl.

Exactly! She just said we have to figure out what those triggers are since there really is no specific ones that affects everyone. So now that you know it's spinach and eggs you will take Benadryl if you know your going to eat it instead of avoiding it? Just curious. Because say it is spinach, should I 100% avoid or allow tiny bits to be ground in some food so he get's his vitamins or is that crazy?

Thanks guys! Definitely excited to fatten him up with food! Just going to go slowly

I take a medication called cromyln soduim 4x a day, 1/2 before I eat and before bed it is supposed to stop the mast cells from releasing all at once. However some days or weeks are just bad ones where this medicine does nothing so I will not eat any of my trigger foods. For example I am perm off tomatoes and all sauces because my body just cant handle it. Also when I am pg I eat no eggs unless I pre medicate with benadryl and cromyln and don't eat them often. Sometimes I also have to go on prednisone to keep things in check.

I also stay away from grapes because they have high histamines. There is a list of high histamine foods.

If you find a food that causes him problems I would avoid it and only give it to him once and a while.

TJ1979 · October 2014

I'm so glad you saw a knowledgeable doctor, and have some answers finally! It still sounds like it's going to be a little rough going, but definitely better knowing you have a plan, and someone to ask when there are issues.

mcgeeva · October 2014

luvboston my doctor yesterday wrote that down for Carter but I had zero clue what it was. When did you find out you had this? Did it get worse for you? Just trying to figure this all out since we are just now going to introduce all these foods.

luvboston · October 2014

mcgeeva said:

luvboston my doctor yesterday wrote that down for Carter but I had zero clue what it was. When did you find out you had this? Did it get worse for you? Just trying to figure this all out since we are just now going to introduce all these foods.

2009 however they are pretty sure I have had it my whole life looking back at my pictures and taking a history. I have always had face flushing.yes it has gotten worse in some ways but better in others. I almost died in 2009 because no one knew what was wrong with me, so compared to then much better. Also all the immune treatment I have had sometimes sets the mast cells off.

however

mcgeeva · October 2014

Aye im so sorry luvboston that is so scary! Glad they figured it out so you can try to manage it without further scares.

mdiblasi10 · October 2014

I am so happy to hear you found the expert! She sounds like she gave you answers and a good action plan.

Robeano · October 2014

What a good update! I am so glad you got some real answers, and a doctor who knows what they're talking about.

Sounds like this is manageable for you guys right now, thank heavens for that eh?

jesselayne8 · October 2014

So glad you have answers and an action plan if needed!

ccam · October 2014

So happy that you have some answers!

JBDamonM · October 2014

Very happy you got some answers.....also you know about the Epi co pay coupon that is out there right now right? I got three sets for free. Just google it.

mcgeeva · October 2014

JBDamonM said:

Very happy you got some answers.....also you know about the Epi co pay coupon that is out there right now right? I got three sets for free. Just google it.

Yep!! My doc yesterday said I can go back a month after I got my prescription filled to get another set for free! So going back this weekend

We shall see if it works!

Mayzie15 · October 2014

Sounds like you have a great doctor and a good plan in place!

Mrs.AmyDylan · October 2014

Yikes. So glad you got to talk with a doc that actually could help. Just knowing what is going on will bring you a world of change. Good luck with learning all his trigger foods.

imoverit · October 2014

Great appt. glad you have a more solid plan.

Just wanted to give an update on my little man..now that I have answers

Re: Just wanted to give an update on my little man..now that I have answers

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