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06-29-2010, 02:48 AM   #1
talochka
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Join Date: Jun 2010
Crohn and baby

Hello everyone!

I am in such a dispair now and would greatly appreciate your help!

I have baby of 10 months old. Since first months of her life we were experiencing eating and weight problems. Though, she was completely on the breast feeding first 6 months, she would not eat well, would have a couple sips of milk here and there, etc. Of course, we had constant weight gain problems. Until 6 months there was no single months (with the exception of the first month) that she would gain more than 200-300 grams. By 6 months she started loosing. At 6 months we did a check up and they saw some kind of ulcers in her stomach, we went on the treatment and for couple weeks afterwards she was eating very well and gaining. Then it all went back to how it was before. At 9 months we did the scan again and the ulcers in the stomach were gone but the new one appeared in the guts.

Sister of my husband has a severe case of crohn with the operations every couple years.

After I told it to the doctor they said we need a biopsy. Now we are waiting for it- because in the Netherland everything takes ages....

If anyone had babies with crohn- could you please tell me if the symptoms of your children were similar?

My daughter does not eat (every feeding is a war), wakes up 10-15 times a night, at ten months we hardly weight 8 kilos. But she is still active, plays a lot, does not look too skinny.

Gosh, I do not know how I am going to survive till the biopsy because this not-knowing is worse than anything.

Maybe you can also give me the links to the forums of the parents whose children have crohn.

Thank you very much!
06-29-2010, 03:24 AM   #2
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Join Date: Oct 2007
hi Talochka, and welcome to the forum

it must be heartbreaking to see your tiny baby not thriving as she should - but the good thing is she is being investigated and i hope it will be only a short time until you have a diagnosis for her, and treatment to help the problem.

i found this link to a Crohn's support resource in the Netherlands - http://www.crohn-colitis.nl/crohn

there is also NACC - which is UK based, but they have a lot of information particularly for parents and children. i'm sure if you emailed them, they could give you some info.. http://www.nacc.org.uk/content/home.asp

good luck with everything, please let us know what happens.
07-13-2010, 08:46 PM   #3
Dexky
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Talochka, I am sorry that I missed this in your story. I can't imagine how scared you must be. Have you had the tests yet? Please let us know how it goes.
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07-13-2010, 11:57 PM   #4
DustyKat
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Join Date: May 2010
Location: New South Wales, Australia
Hi talochka and

This is such a difficult time for you, as you say, the waiting is the hardest part, knowing something is wrong but not being able to treat it or put a name to it. How long until you have the tests done? Have they put her back on the treatment she was before?

Ding has given you some excellent links there. Please keep us posted on how things are progressing and remember we are here for you.

Take care,
Dusty
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Mum of 2 kids with Crohn's.
08-04-2010, 05:09 AM   #5
amirah
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Join Date: Aug 2010
Hi my daughter is waiting to be tested she is 15months old, she only weighs 8kilos and has problems feeding, constant diarrehea, bad pains and sometime blood.
hope you find the answers you need.
08-04-2010, 06:36 AM   #6
Chrismac
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Location: Newcastle Upon Tyne, United Kingdom
Goodness, I hope you get the biopsy soon, please keep us up to date. We are here always.. and will give you any advice we can. I hope your girl and Amirah's get some rest and peace from the pain.. they sure deserve it.
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