Friday, August 10, 2007

Eosinophilic Disorder!

Sooo,I haven't posted much about my daughter being sick cuz .. well, it makes me cry everytime I talk about it or start writing about it, but I think that I should because it's a disorder that is rare and happens mostly in children. It is getting more common though and there is some great resources out there. So I thought that I would share her story as briefly as I can and if anyone knows anyone going thru the same thing maybe I can help point them in the right direction!
Lauren was (and still is in my book!) perfect and healthy and normal and she got what we thought was a stomach virus in December, she had just been sick with a stomach virus about two weeks before and it is the right time of year so we didn't think to much about it . Well in December she was really really really sick for 7 days! I took her to the emergency room and they said " she doesn't have appendicitus" and sent us home. She got better but got sick again in January, so I took her to the doctor and he said she had the stomach flu..."three times in three months?" I asked ! So we got sent home again and THEN she got waaay worse in April. Screaming in a fetal position asking GOD to make her and Angel!!!! she did this off and on all day and nite for 2 straight weeks! We had 3 emergency room visits and 2 doctor visits and 2 days in the hospital with a morphine drip to control the pain all in those 2 weeks. HELL...I can't even describe my feelings I had those weeks. She had every test in the book and they all came back normal. So, we went to the Phoenix Children's Hospital and they said that a virus "probably settled in her intestines and caused some damage and sent us home with some prescription strength liquid Pepcid. The Pepcid worked a little , the pain was def. less, but then she got really sick again one day and started bleeding when she went to the bathroom, another emergency room visit and lots of tests. We went back to the Children's Hospital for her to get a colonoscopy and a scope. They took biopsies and found eosinophils in her small intestine and colon. Eosinophils are white blood cells that are made in your bone marrow and usually triggered by and allergy or parasite. She tested negative for parasites and she had a blood test called RAST for allergies and tested negative for allergies. These little eosinophils clump up and release toxins and it causes tremendous pain. If they find a certain percentage you have an eosinophilic disorder. The kind of Eo's disorder you have depends on where they find them in your digestive system. There are severe cases where children can't eat at all and they have to have feeding tubes put in their stomachs...of course this is what I saw when I started researching! My daughter is not a severe case but it can get worse and my goal is to get it under control now. She is going to the Cincinnati Children's Hospital sometime here in the future, we are waiting for all of her test results , etc. to be sent there and then they discuss her case and make an appt. They are THE hospital to take your kid if they have this. They have their own section that deals only with these disorders. She will be up there for a week for more tests and then at the end of the week they decide what course of action is best. So, I'm praying every nite and hanging in there for her :) We have good days and bad days but most are good! She's loving school and just started first grade and it's keeping her busy and her mind off of it. She's very tough, tougher than me and I'm very proud of her! If you want to know more please check out these websites
www.apfed.org and www.curedfoundation.org and www.eosinophilictucson.com these are great websites and provide a wealth of information and resources, they helped me alot! Also you can visit www.cincinnatichildrens.org for the Cincinnati Children's Hospital info. Please feel free to contact me if you are going thru this or know of someone....I know what you're going thru and you're not alone and you're not crazy! Take care everyone :)

3 comments:

michelle said...

Oh, I hope they can help her! Is diet a factor? My hubby has celiac disease, also in the intestines but an auto-immune disease that cannot tolerate gluten. We were actually relieved when he was diagnosed so that we could do something about it. Sounds like you are at that point too. If it turns out gluten is a factor for her(I know it is linked to lots of things) a great food site is killthegluten.blogspot.com. Trying to help any way I guess! Oh, has your party fairy girl shown up yet?

PAINT MINE PINK said...

Sarah i have never heard of this disease before (i suppose like many others that we never hear of), thankyou for being so brave and open to enlighten us about it. i truly hope your beautiful daughter will be ok. Times like this you have to be so strong.

id love you to keep us updated on her progress,

hugs,
Shannon :)

Jules said...

Oh poor you and poor poor her she looks like a sweetie.I knlw what its like to have a child sick youd much rather it be you.I hope and pray she finds a cure real soon.I am your cotton and candy blog swap partner and am just spying here to check out what you like.Feel free to spy back.
Hugs
Jullie