Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> Hello http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1364166109 Message started by Cath on 03/24/13 at 12:01:49

Title: Hello
Post by Cath on 03/24/13 at 12:01:49

Hi everyone,
My name is Cath and I live in Liverpool,U.K. Where to start? My eldest daughter, now 8, was diagnosed with sever anaphylactic allergies to milk, eggs, all nuts, mustard, strawberries, raspberries, blueberries and blackberries at an early age. When my son, now 6, arrived it was no surprise that he too had anaphylactic allergies to milk, eggs, nuts, fish bananas, kiwi, melon and pineapple although he also suffers constant diarrhea and complex migraine. When Roisin my third child arrived she was tested straight away and again had obvious milk,eggs etc allergies but here things changed. She had terrible diarrhea that burnt her scan so had an endoscopy and colonoscopy and was diagnosed with eosinophilic colitis. We then discovered she was allergic to all food ( she's now 21 months and still 100% breast fed.) She had further tests and has been diagnosed with mast cell activation disorder. She is on lots of medication and had an NG tube for a while and now has a peg in her tummy. She has small amounts of neocate milk down this but still reacts. She is in and out of hospital and she is probably having another bone marrow biopsy after Easter. She's a little star and smiles through it all. They are now testing Sean for the same condition as they think he has it too. Caitlin also has raised tryptase. All new and very glad to meet other people who understand.
Look forward to hearing from you and sharing experiences
Cath

Title: Re: Hello
Post by Maureen on 03/24/13 at 12:44:45

Hi Cathy,

I am so sorry to hear about your children. I would rather have something wrong with me then one of them.

There are a lot of knowledgeable people here and I am sure you will get great information.

Hugs to you and your children, I will keep you and them in my prayers.

Maureen

Title: Re: Hello
Post by Lisa on 03/24/13 at 16:47:03

Hi Cath, welcome to our family! I am sorry you're having such difficulties with your children. How wonderful, however, that your doctors have hopped onto this so early! Having them recognized MCAS in children is an EMENSELY HUGE STEP FORWARD!!! My three children also have it but not quite so severely. It's definitely a challenge to work with, however, and this also indicates that either you or your husband or even the both of you likely have the genetic defect in order to pass it on to them. This doesn't mean you have the full blown defect and may not show the masto to the degree your children do, but it's there for this is indeed hereditary. What to do about it? Not much, sadly, but being aware of it at least helps you to consider triggers and learn to avoid them.

As to your children, you really need to have your hands in the hands of experts!!! Dr. Clive Grattan is the leading authority in the UK. Have you spoken with Irene Wilson of Mastokids yet? She's tremendous and can be of an incredible help to you. I also would recommend your speaking with Dr. Luis Escribano of Toledo Spain. His Masto Reference Center is the closest to you and he has children the world over in studies that he is doing. If you want I can try to contact him for you. I would suggest, however, that you do since dealing with the children has it's own challenges and their masto requires a special approach and especially since MCAS is not really recognized in children yet.

If I can be of some help to you, let me know. Send me a PM and I'll be glad to help!

Lisa