Welcome, Guest. Please Login
MCD - Mast Cell Disorders
  Welcome to our forum.
  HomeHelpSearchLogin  
 
Page Index Toggle Pages: 1
Send Topic Print
Biopsy results help please? (Read 560 times)
ZWVMom
Rookie
*
Offline


I may not be perfect but
I'm always ME.
Posts: 14
Carthage, Texas
Biopsy results help please?
01/02/13 at 09:46:06
 
Okay... so... we started all of this last October, and, throughout my journey of all of this, I have yet to find the answer to this? We went to Boston in June and became a patient of Dr. Castells... but, because we were on Flovent, and had been for years, she didn't want to do any testing until it was out of my daughter's system for at least 3 months. So, she diagnosed my daughter with MCAS, and Anaphylaxis until further testing was done. So here we are, finally getting the GI biopsies done, and the results are so confusing! During the biopsy, he found dried blood and an area that was really red and agitated, which he had no clue as to why... then the biopsy results came back, and he has no idea what level is considered elevated, what it means, or where to go from there... All are numbers of mast cells on high power resolution, colon 27-30, small intestine 27, stomach 55. The next problem is that before the testing her primary problems were constipation and abdominal pain... but during the procedure he saw no signs of inflammation at all, and she's had nothing but severe diarrhea since the procedure...He's emailing Dr. Castells, but her nurse said she's out of town, so it may be awhile before she replies, and honestly, I'm tired of waiting, she had her EGD on Dec 18th... it's been the longest wait ever to get the results! So... if this were your kid, what would be the next step? Zoe's just 6, and omg... our world's been turned upside down this past year! I've done more research than actual doctors do to become doctors I swear... *lol* Thanks! -Chrissy
Back to top
 

Chrissy, mom to Zoe, age 5 and Zivi, age 3
 
IP Logged
 
DeborahW, Founder
FOUNDER/ADMIN
********
Offline



Posts: 1207
USA
Re: Biopsy results help please?
Reply #1 - 01/02/13 at 10:39:02
 
I just wrote a long response, and it disappeared. Grrr!

Right now, her mast cells are reacting. you need to get them calmed down. Do you have a plan of action from Dr. Castells regarding what to do when she goes into anaphylaxis or starts to trigger? If so, can you share that with us so that we can give you suggestions as to how to apply that right now?

Basically, she probably needs extra histamine blocker meds right now, but being a child, I have have no idea what you would add or increase. I only know how to do that for an adult. You need to call Dr. Castells' office, demand to speak to a nurse today, and tell her to get you an answer from Dr. Castells as to what to do. Get aggressive, you have no choice and it is their responsibility as her doctor to help you.

In addition to increasing meds, the goal is to get her mast cells calm and stable again. That can take days at this point, so be patient. She must avoid stress and extreme emotion, as that degranulated mast cells. Surround her with happiness, rest, relaxing things -- watch movies, play at home -- don't go out, that is too tiring and stimulating for her mast cells. Make sure the home atmosphere is happy and relaxing, so if there are any siblings, they must be sweet and good right now so that your daughter will always feel relaxed and her mast cells can calm down. I have the same diagnosis as your daughter, and this is how I get my mast cells back under control. (My doc is Dr. Akin, the partner of Dr. Castells)

As I mentioned, if you have instructions from Dr. Castells as to what to do when she is flaring, please share them with us and we can try to help you figure out what to do.
Back to top
 

Feel well!
DeborahW, founder
WWW  
IP Logged
 
ZWVMom
Rookie
*
Offline


I may not be perfect but
I'm always ME.
Posts: 14
Carthage, Texas
Re: Biopsy results help please?
Reply #2 - 01/02/13 at 12:19:07
 
Well, she did go into Anaphylaxis on Saturday, and of course the ER wouldn't do Epi, so, they did Solumedrol and Benedryl instead and sent us home with Orapred... I've got 24 meds in my arsenol over here, but, she's completely maxed out on meds, and we're using Benedryl right now, which is our last emergency med. We're so used to reactions, it's like 2nd nature now.... Zoe's completely homebound, attends school through Skype, and doesn't leave the house unless we're going to the ER or doctor's visit. It's the only way we can keep her reaction free. She's been reacting ever since we left the hospital after her EGD on the 18th... I know how to handle the whole reaction part of it, it's the GI Biopsy results I'm confused about... because they are greater than 20, does that mean that the major criteria for SM has been met? and, if so, what comes next? Her GI has no clue, and quite honestly, I'm so used to everything coming back negative, I mean EVERYTHING, that I didn't expect them to find anything... *lol* I mean, you hope that you get something concrete so you don't feel crazy, but you hope they don't, cause you will have to face the facts of the disease with your kid... not that I'm not doing that already, but kids with MCAS can outgrow this... kids with SM usually don't... do you know of a flowchart of anykind, that says hey, start here, then go here, then go here... etc?
Back to top
 

Chrissy, mom to Zoe, age 5 and Zivi, age 3
 
IP Logged
 
Joan
FORUM ADVISOR
*****
Offline



Posts: 1401
Colorado
Re: Biopsy results help please?
Reply #3 - 01/03/13 at 17:35:39
 
Sorry your daughter is suffering!  I agree with Deborah that Dr. Castells office needs to guide you on meds and help you interpret test results.  Have you been to the MastoKids.org website?  I haven't been there lately, but have heard other patients say good things about the information there.

Regarding GI results in adults, numbers of mast cells alone does not necessarily mean SM.  I would imagine the same would be true of children, but I don't know for sure.  My GI doctor said that when he finds excessive numbers of mast cells in the GI tract, he checks for whether or not the cells appear normal and does a tryptase test on the patient.  There is a disorder in adults called Mastocytosis Enterocolitis that is diagnosed by proliferation of mast cells in the GI.  You could Google it and see if you think the symptoms sound like her problems.

Have you been keeping a food and symptom diary and trying a low histamine diet or other elimination diet to check for food triggers?  Has she been tested for food allergies?
Back to top
 


Joan
 
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print