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05/12/2010 09:46 PM

I suspect my baby has Crohn's Disease

shany
 
Posts: 3
New Member

I found this site and started reading about some of the posts relating to babies with crohn's.

I have reason to believe that my one year old daughter may have the disease. Over the passed couple of months I've been to many doctors, specialists, we've had blood work done at least 5 different times. I began to get concerned when i noticed weight loss at around 6 months. She was nursing at least 10-12 times daily but for some reason she was losing weight. She was 14 pounds. She is now 14 months, she has an extremely healthy appetite and she is still only 14 pounds. she has grown a total of 6 inches since she's born. She has runny stool at least 4-5 times daily and about two months ago she began developing a rash that looks like eczema. In one of her blood tests they noticed a high white blood count and for no obvious reason, she was not sick or anything. We retook that portion and it came up that way again.

The Endo suggested it can be celiac, colitis or crohn's, he even mentioned turners disease which we just tested for , still waiting on results.

I am losing my mind, it's seems like the diagnostic process will never end. If anyone out their has a similar story or any information they can share, please reach out.

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05/13/2010 05:10 AM
libit
libit  
Posts: 2449
Group Leader
I'm an Advocate

Shany getting diagnosed with crohns can be very frustrating with all the tests. Especially at your young daughters age. Its a disease that wrecks havoc on our bodies. We do have members on here with young children and if you need to contact one of them I'll be glad to send them a message and ask them to respond to you. I wish you and your daughter all the best and please keep us posted on how she is doing. Our thoughts are with you.

05/13/2010 10:32 AM
shany
 
Posts: 3
New Member

Thank you so much. I would love to contact anyone that can give me some feedback, I think that would be very helpful.

thanks again


05/13/2010 10:58 AM
mycrohns
mycrohns  
Posts: 194
Member

Welcome to the group Shany! Aww...I am so sorry to hear what you and your little baby is going through. I hope your daughter can be diagnosed correctly and soon to know how to control anything from that point. I don't have any children and I was recently diagnosed with this beastly disease. But, like Libit said, you will find that this site does have much information to offer, as there are parents with children that have Crohn's. i sure do hope someone will chime in and give their feedback on this.

What do the doctors say? so for the Celiac, Colitis and Crohn's, it came back negative? Please let us know on the update for Turners disease..

My thoughts and prayers are with you and your daughter. I hope that all will be well and you will find the answers that is much needed at this time.

Please keep us updated and I am here for you in any way that I can me.

Hugs, thoughts and prayers!

XOXO

Natalia


05/13/2010 10:11 PM
shany
 
Posts: 3
New Member

Hi Natalia,

Thank you for your concern. I am so sorry to hear that you have to deal with having this disease now. I hope it is manageable and that you get better as quickly as possible. I will pray for you.

Right now we've ruled out , kidney, thyroid, and some other important things. She's given blood so many times I just don't have the heart to take her for more blood tests, it's too traumatizing. She's so tiny they couldn't get blood from her arm for the turner's test they filled 3 vials with blood that they took from her tiny little finger. It's just too sad. We will see the GI in three weeks to test for the three C's, I am now monitoring her stool with the lab.

The turners results come in in one week hopefully. I will keep you all up to date as answers start hopefully rolling in. Thanks so much.

Post edited by: shany, at: 05/13/2010 10:13 PM


05/14/2010 07:08 AM
karih
karih  
Posts: 129
Member

Hello Shany, sorry to hear about your daughter! That is so sad to hear with her being so little. My daughter is 7 years old, and was diagnosed with Crohn's in March, but suffered for one and a half years prior before the diagnosis.

This is a bit interesting for me to hear about your daughter, because when my daughter was an infant, she had blood in her stool for a while. Makes me now wonder if even back then it was related to the disease. We changed her formula to soy based formula when she was an infant, and it helped her out a lot. The blood went away, and she was able to have bowel movements normally, but she still had terrible spit up, well into her toddler years. Not sure if that is anything you have tried, or maybe even it is just a silly suggestion in the scope of things.

If they are considering cileac, could it also be possible that maybe your daughter is having an allergic reaction to a food that she is receiving, if you are nursing her, through something you are eating? I only mention this, because I found it interesting that cileac is being considered, when she is not eating foods, but then again, maybe it is just on my limited knowledge of the disease. It was also something the doctors were considering to be the culprit for my daughter. What makes me think of the allergies, is because my daughter got the same kind of rash, suffered from this itchy rash for about 3/4 years before we learned she was allergic to eggs and removed them from her diet. Again, maybe this is a silly thought in the scope of things. I will also add, that for all of my daughter's itchy skin, the lotion that helped the most, even through all the prescribed stuff, was the Aveeno baby lotion that you can just get at walmart, the one with a dark blue cap. These are just things that popped into my head when reading your post, and looking back over my daughter as an infant, what helped her, and her allergies as well. Hope something I mentioned helps you in some way, even if it just leads you to something else!

I hope you are able to find out answers from your doctors soon, so that you can know specifically what your daughter needs. I hope she feels better soon! Feel free to send me a message anytime if you need someone to talk to.


05/22/2010 02:33 AM
zaftigmama
 
Posts: 6
New Member

Wow - it must be so distressing to have such worries with a one year old! My daughter was just diagnosed, she's eight, but I'm pretty sure her first symptoms started around six years old. I can't imagine trying to diagnose such a young child, who can't really speak up and tell you what's wrong.

I know how hard it is to bring them in for bloodwork - even when it's the right thing to do, it's so heartbreaking. Good luck! I hope you get some answers soon.

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