Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> Hi- my name is Louise. I have a daughter with MCAD http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1302229556 Message started by cnm1 on 04/07/11 at 15:25:56

Title: Hi- my name is Louise. I have a daughter with MCAD
Post by cnm1 on 04/07/11 at 15:25:56

My daughter, Rachel, 23 has just been dx with MCAD by Dr Castells. Rachel has been ill about 10 years. For 5 years she was homebound (8-12grade). She initially dx with CFS then POTS (dysautonomia). She sees Blair Grubb for the POTS. (I am in NE Ohio)
I started researching mast cell stuff after Rachel developed increasing issues with food allergies. She had no problems has a child. Shortly before Rachel got sick she started having alot of stomach issues. Also 6 months before she got sick - she started flushing. After 5 years she was dx with multiple food allergies: whey, soy, wheat, peanuts and eggs. An allergen free diet helped alot as well as her bucket of drugs ::) for POTS (midodrine, mestinon, florinef, welbutrin, zantac, claritin, flonase)
It was obvious after any flushing episode - her POTS would flare. I took a while for Rachel to get to see Dr Castells but it was worth the wait!! Rachel started on gastrocrom and advair 2 weeks ago. SHe is increasing the dose rapidly because she has no side effects and feels so much better. :D. IN spite of all her health issues, Rachel is living in Boston and attending grad school. She just called and said for the 1st time in over 10 years, she could exercise and feel good afterwords!!!!!!!!

Title: Re: Hi- my name is Louise. I have a daughter with MCAD
Post by Kim on 04/07/11 at 16:12:29

I want to say "welcome" and I am so glad your daughter Racheal is starting to feel so much better and is able to start experiencing life again! That is so exciting. I am glad that you found this site. It is very helpful for education, personal testimonials and support. Please keep us up to date on how things are going for Racheal!

Kim

Title: Re: Hi- my name is Louise. I have a daughter with MCAD
Post by cjoy on 04/07/11 at 18:29:56

So glad you found this forum. I am relatively new here myself but want to welcome you. I have learned so much from others on this forum. I am so glad that you found Dr. Castells and that your daughter is improving dramatically. :)

Title: Re: Hi- my name is Louise. I have a daughter with MCAD
Post by Josie on 04/07/11 at 21:44:10

Hi Louise ;-)

Welcome to our forum ;-) I have a diagnosis of idiopathic angiodeama ( swelling , no idea why ;-)

Your daughter is doing incredibly well being at grad school with only just being diagnosed . As you look around the forum you will find lots of really interesting information . Dr castells is a leading doctor in mcad so i am very glad you have found her . Unf your experience of 10 years to diagnosis is not uncommon here ;-( but you are over that hurdle , it must be amazing ;-)

I am glad Rachel is doing so much better ;-) Triggers remain an issue even after diagnosis and for many continue to be the best way to manage this illness . I am glad Rachel can exercise , but would urge caution to do so in a very protected manner as she may feel it later or the next day ;-) Her high risk times will remain the same , just less

My naughty list reads much like rachels , she is definately not alone in that . I have gone from well to poorly to at the moment doing better , but not there yet ;-) I am pre gastrocrom ;-)

Pots can run alongside mcad . i will leave it for others who ahve it , to say more ;-)

The chronic fatigue symdrome may stay but is more likely to dramatically change . A look at the symptoms list on the mastcystois society web page will give you a clue . Many , i would say all , of the symptoms are due to mcad , so as she does well and has varaiations , so will her fatigue .I have found if I rest at the point I know I need to I can sleep and recouperate . This feels hard to do in any schedule , but , it pays off ;-)

Sudden fatigue for me is a sign of trouble , in which I seek out and get away from a trigger and medicate .

hope to hear more from you soon , and Rachel if she would like ;-)

Josie