Friday, October 17, 2008

Eosinophilic colitis

....is the diagnosis we've been given for granddaughter, Jasmine. It's a chronic, allergic, inflammatory condition of her large intestine. In simple terms, she is allergic to most foods. There is not much known about this illness. It may be autoimmune. We don't know yet.





She's just 20 months, and has been dealing with digestive upsets practically all of her life.

Diagnosed with GERD (gastroesophageal reflux disease) about a year ago, her mother (my daughter) thought at that time "we finally have a diagnosis". Now Jasmine would begin to put on weight, enjoy her food, and maybe even sleep through the night.

Although she did improve somewhat, we knew there was more to this picture. She was not getting better. If she wasn't having diarrhea then it was constipation. The type of food made no difference. Her mother could feed her prunes all day and it wouldn't relieve the constipation. It sounded like she had an underlying motility disorder. Blood tests, x-rays and allergy tests were done.

She gained 2 lbs. from January to August. Not good enough.

We knew there were food intolerances, but the only one we were certain about was milk protein. Not lactose in milk. Protein. I'd never heard of anyone, particularly a baby being allergic to milk protein. Jasmine was and still is. So she drinks rice milk.

She eats chicken and rice. Sometimes fruit, sometimes potatoes. Not much else. Her problems persist. So the next step was to take a look inside and biopsy anything that looked suspicious. That meant a trip to the hospital where she was put under anesthesia for her endoscopy (both ends). You can imagine that a toddler would not cooperate for this type of procedure, hence the need for anesthesia.

We now have another diagnosis. Although eosinophilic colitis is a disease she will have to learn to live with, there are medications to help. Not cure....just help her through.

If anybody knows anyone with this form of eosinophilic gastroenteropathy, I'd appreciate an email.


37 comments:

Mimi said...

She is such a doll too... I will do some research.

Beverly said...

I'm sorry to hear that. Was she tested for CF?

She's a real cutie. I'm hoping that you can all make the adjustment and get her on the right track. It's hard to see little ones suffer.

Bear Naked said...

Oh poor little sweetie.
I wish I could help.
I'll start asking around my circle of friends to see if anyone can help you.
I'm putting Jasmine on my prayer list.
Bear hugs to her.
(((Jasmine)))

Bear((( )))

Mary said...

Jasmine - what a pretty little girl. I would like to know more about this disease...sounds a little like what adults suffer with - irritable bowel syndrome? I'm not medically inclined so I will check it out "Eosinophilic colitis" and check back. Keep us updated.

Mary

Wendy said...

Thanks Mimi - anything will help.

Hi Bev, well you know what that's all about. It's been quite a ride and I know we're not out of the woods yet.
Yes, she was tested for CF. It was negative.

Hi Bear Naked, thanks. I appreciate any info and prayers are always welcome.

Hi Mary, irritable bowel syndrome is related. Same symptoms. It's the cause that's different and the treatment. Thanks for stopping by.

Shammickite said...

What a shame that such a nasty disease exists... sometimes I wonder why little sweeties like Jasmine have to put up with such discomfort. But thank goodness that medical science is able to diagnose this. Perhaps now that you know what the trouble is, a controlled diet can help her.

marmee said...

wendy your sweet little grandgirl is precious. i will be praying for you and your whole family. you all have a lot on your plate. hopefully someone will be able to give you some good answers on how to deal with this disease.

miss*R said...

I don't know a thing about this disease but I do know that many children who are being born now are very sensitive to foods & chemicals... have you heard of the Indigo children? I will keep her in my prayers xoxo
ps - thankyou for visiting my blog and with springtime here, I am sure I will have lots of news about my garden :)

Carin Fuchs said...

Your bright little sunshine really needs to deal with quite a lot.
I don't know anything about the disease but will try to find something about the research concerning the eosinophilic colitis done over here.

Lots of hugs and a few extra ones for your daughter, - she must have felt so desperate at times.

Carin

Rose said...

Poor Jasmine! This is not an easy thing for a child to deal with. At least you have a diagnosis to make it easier to find ways to help.
I'm not familiar with this particular condition, but I'm going to send you an e-mail, Wendy.

Anonymous said...

go to ....ww.apfed.org
or www.curedfoundation.org
there is also a yahoo group of parents of children with eosinophilic disorders you can join for support called eosinophilgastro.
Your friends can help by donating $ for a cure at either of these fine organizations apfed or cured. They are non-profits that are working for a cure and awareness. Your granddaughter is lucky to have a grandma like you

Viv

peppylady said...

Oh those allergies. I suffer from them yuk.

Coffee us on.

Wendy said...

Hi Shammickite - I agree. There are too many nasty diseases around. Controlled diet will help. But first the inflammation has to be controlled. Then the problem begins with trying to figure out what upsets her and what doesn't. Let's hope things settle down soon.

Hi Marmee - thanks for stopping by and prayers are always welcome.

Wendy said...

Hi MissR - thanks for visiting. I love to see what others have in their gardens, especially since you are in springtime. Yes, I have heard of Indigo children. I am wondering if more and more little ones will be reacting to our environment as time goes on.

Hi Carin - you hit the nail on the head. My daughter has been going out of her mind, not only with Jasmine's symptoms, but our slow and frustrating medical care.
Thanks for the hugs and offer to do some research.
Hope you're enjoying the season in your part of the world.

Wendy said...

Hi Rose, thanks for stopping by. Glad to hear from you any time.

Thank you Viv. I had heard of the apfed, but not the others. I will check them out.

Wendy said...

Hi pepperlady, not fun to suffer from allergies, I empathize with you.

Abbasgirl said...

I think this is the same disease a teen at my church has. It's totally under control now. She is happy and healthy. I will find out more for you.

Love, Annette

Wendy said...

Hi Annette - thank you so much. It is always nice to hear of someone who is doing well - even with a diagnosis such as this.

Grammy said...

Hi Wendy,
I was here not long after you posted this. But did not know what to say. I know some thing can be controlled with a organic diet. The more research I do. I find the blame on the food we are consuming, but I know nothing about what is happening to your precious granddaughter.
Big hug. She will be in my prayers along with you and your family.
I did add the baby thing to my site. Thanks.
xoxo
Grammy.

Cheryl said...

Dear Wendy.....Jasmine has a lot to deal with.....poor little pet......I have never heard of this condition, so unfortunately cannot give you any info........

As you know I am into alternative remedies and sometime homeopathy can be of great help supporting the body alongside conventional medicine.......it maybe further down the line something to think about..........

I feel for you........our grandchildren are so precious, all we want to do it protect them.....

Wendy said...

Hi Grammy, thanks for your kind concern. Organic is always a good idea and particularly for somebody with food allergies. Glad you added the baby widget - it's fun!

Hi Chery, thank you for your concern. I do hope some alternative or homeopathic therapies will work as well a bit later on, after all, we are treating the whole person, not just the body.
You are quite right. Our grandkids are so precious....
I wonder if her hypersensitivity to our world is a "wake-up call" to stop pouring chemicals and plastics into our environment.

Beverly said...

when I look at that precious face, I just want to hug her tight, and she would be better...I feel for her with the GI problems, I would have hated to have started so early....
I pray she can gain weight and get stronger...

Wendy said...

Hi Beverly, thank you so much for your good wishes. Everybody has been most kind and I truly appreciate all the help and resources.

Morning Glories in Round Rock said...

Wendy, have the drs given any indication that she may grow out of these allergies? Little Loudon was born with GERD, and I quit my full-time job to stay home with him. He was in so much pain there have been days I have not sat down. His mother was exhausted and could not cope alone. We found he has allergies to dairy, wheat (gluten), and soy. It seemed monumental at first, but gradually it becomes easier to cope and a routine is found. My poor daughter was so restricted on her diet because she was breastfeeding she lost a lot of weight.

You may find that after a period of being totally off the foods that cause a reaction, that she may gradually be able to add them back to her diet. It is a slow careful process though, and one that can't be pushed. There are more and more resources available, but it does require some detective work. Please email me if you want, I know how frustrating this process can be. Lots of hugs to your granddaughter--and daughter too!

Q said...

Dear Wendy,
I am sending you and your daughter and darling Granddaughter lots of postive thoughts.
I have a digestive disorder too, not eosinophilic colitis, but I have trouble digesting grains and yeast! This came on just two years ago. I wonder if it is something in our food chain? I do eat organic and that helps.
I see a natural path doctor who has helped me so very much. I will mention this next time I am in.
I also practice Ayurveda, that is all about good digestion! Some where in all of this I know there is help for your dear granddaughter.
Bless her heart,
Sherry

Amy said...

Your poor daughter and granddaughter. Subjecting a little kid to so many tests and meds and procedures is heart-wrenching. No child should have to live with chronic health problems, and it sucks that so many of them have to.

I'm not positive, but I think I may have a blog friend who suffered from this as a kid--she just had twins and is still in the hospital, but I'll shoot her an email and let you know what I hear.

(Also, kudos to you for supporting your daughter so much, esp. with your husband's health issues, too. I would have loved if one of my parents had been around and involved when my kid struggled. I bet it means more to your daughter than you realize.)

Wendy said...

Hi Morningglories, the doctors have not been very encouraging at all. I don't think they've had much experience with this.
Right now, she's on a mast-cell stabilizer, which is supposed to stop the production of eosinophils (white blood cells) at the source.

She may or may not outgrow this. I pray she does. Even the dietitian does not have much to offer at this point. It is a slow and discouraging process, but with people like you who through your own experience can give some encouragement - it makes things easier.
Thanks for your help.

Wendy said...

Hi Sherry, isn't it strange to have a digestive disorder at our age? Everything is working well and then - pow! What happened? Curious. I do think all the chemicals they pour into our environment has got to have an effect on our poor bodies.
Thank you for your kind wishes. I hope things turn around for you too.
Love and Light

Wendy said...

Dear Amy - well you hit that right on the head. Too many tests and too many procedures for this poor little mite. But you probably speak from experience.
I would love to speak to somebody else who is living with this stuff. Personal experiences are how we learn from each other. So if your blog friend is willing to email me, I'd be grateful.

Thanks for your support. I wish for you that your children had grandparents close by, but since that's not the case, I'm sure when it's your turn - you will be there for your grandchildren.

Beverly said...

Hi,Wendy, Just checking in here. I see that you have many helpful comments here. As someone said, it is good to have a diagnosis. So many people come to the cf forum besides themselves trying to figure out what is wrong with theri child, and once they get a diagnosis, it is a relief. Then they can get started on the road to treatment.

Many prayers for your granddaughter and all the family.

Wendy said...

Hi Bev, thanks for your prayers and for checking in. I am overwhelmed with all the good information and wishes from bloggerland. It is a relief to have a diagnosis. I am hoping her medication will soon take effect.

JeanMac said...

Oh, Wendy, so sorry. She's so beautiful. I hope your family and the MD's can help her.

Allie said...

Oh my goodness! Sounds like it's been such a ordeal! I hope this diagnosis helps.

What a beautiful child too!

I know that acupuncture can have astounding results with inflammation in the body. On younger children, they often use magnets instead of needles, but the needles don't hurt at all. I was skeptical when I first tried it for a back injury, but it worked so well, that I've used it for other health issues (including asthma, which is an inflammation issue) as well. It seems crazy that tiny needles can do anything, but I swear by it now.

Thinking good thoughts for her!

Wendy said...

HI Jeanmac, thanks for your kind wishes.

Hi Allie, thanks for your input. At this point if anyone comes near Jasmine, she screams bloody murder. Too many blood tests, x-rays, dr's appointments. She won't even let the nurse weigh her. Her mom has to do it.
But I'll keep this in mind for later on.
I am glad acupuncture has helped you. I am quite open to Chinese medicine and agree with their philosophy to treat the whole person, not just the body. Their philosophy of treating energy pathways, or meridians (hence the needles) instead of just the body is just different than our western ways. Who is right? Both. I think we can learn from each other.

Thanks again for your advice.

Michele said...

I just found your post via a search on google. My 8 yo daughter suffers from the same condition and we are currently looking for a cure. Praying for your grand-daughter!

Sophia Jason said...

You can visit the following website http://www.localdoctordirectory.com/library_story_1099.html
It has some good information on the disease and its treatment.
Hope this helps...Take care.

sarah benedict said...

Hi, my name is Sarah and I've been living with eosinophilic colitis for 19 years. The first piece of advice I would give would be to get good insurance because, as I'm sure you have discovered, there is a lot of medical crap to go through. If you have specific questions you can email me at sbenedic@andrew.cmu.edu - hope I can help.