Worried mom of a 3 year old

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verry_sweet
New Member


Date Joined Dec 2007
Total Posts : 4
   Posted 12/19/2007 2:58 PM (GMT -7)   

Hello I have done a ton of reading and I’m worried out of my mind. I haven’t eaten or slept  sad  

 

My 3 year old little girl has tested for Crohn's disease thru blood work and she has an appointment for a colonoscopy in the beginning of January.

 

She had her first pediatrician appointment on October 7 for diarrhea and one time she had bad (she was screaming in agony) gas pains. I was told she had a stomach bug.

 

She continued to have foamy, mucusy diarrhea upwards of 5 times a day until about 2 weeks ago (almost 3 months total). Her GI put her on a low fiber, no milk “junk food” diet and now everything seems to be back to normal. She hasn’t gone potty for the last 2 days and today she had a normal bowel movement (we can go out again yey). Thry all of this she hasn’t had any pain, fatigue, fever, bleeding or any other symptoms except for diarrhea.

 

I just need some advice and I guess I just need to straighten my head out. Does this sound right? What should I expect?

 

Thank you in advance for any advice.

 

~Danielle’s mommy

Post Edited (verry_sweet) : 12/19/2007 3:01:11 PM (GMT-7)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/19/2007 3:07 PM (GMT -7)   
I would wait until you hear more after the colonoscopy. I think that will give you more answers. I am a little leary of a diagnosis by blood test. There might be other tests done after the colonoscopy if it does show Crohns. While this is a life long disease, it is not a death sentence by any means. I have lived with this disease for over 32 years. I married, had 3 daughters and have been able to live a fairly normal life with little bumps in the road here and there. Once enjoyed a 20 year remission. Please let us know how things look after her colonoscopy. Good Luck!
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4100
   Posted 12/19/2007 3:25 PM (GMT -7)   
Crohn's in 3 yr old sounds rare, but certainly possible. It's a good sign that changing her diet has helped. You may want to have her tested for Celiac disease and lactose intolerance, both of which would cause diarrhea. Good luck and let us know how Danielle is doing.
48 yr. old female, diagnosed with Crohn's Sept-Oct. 2007


Zanne
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Date Joined Apr 2005
Total Posts : 3763
   Posted 12/19/2007 3:48 PM (GMT -7)   
My Mother was diagnosed when I was 1. So basically I grew up with it. When I was given the diagnosis myself at the age of 23 I knew that I could have a very normal life with some modifications. Yes it will be more difficult for your daughter if after all the testing it turns out that she does indeed have Crohns, but it may just make her, and you, stronger more tolerant human beings.

As Nanners said, I wouldn't go off the deep end with just a blood diagnosis. I would wait for the rest of the tests to come through. Your daughter may indeed have CD. But she may not actually have a full blown flare for years. I self diagnosed at 13 because I was having some minor issues. I was told I didn't have CD. I was not tested. Had I been given the blood test, I'm sure I would have tested positive, but the rest of the tests may have come out negative, because I didn't really have a full blown flare for another 10 years. I lived my teenage and college years without that diagnosis over my head, for better or worse.

In my opinion the best thing you can do for your daughter, speaking as the daughter of a CDer and a CDer who has daughters who may inherit the disease someday: Handle this like it is any other daily thing that must be dealt with. If you act like it is the end of the world, your daughter will pick up on it and be scared. I know you are scared, but try not to show it to your child. She needs you to show her that this is no big deal. Everyone has some "thing" in life that they have to deal with and this just may be her "thing". Some kids have to deal with learning problems, some kids need wheelchairs, some kids are diabetic..... this may be her thing The more you can treat this like a bump instead of a mountain, the better she will be able to handle this.

And when it is too much for you and you have questions or you just need a shoulder, we are here!
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


verry_sweet
New Member


Date Joined Dec 2007
Total Posts : 4
   Posted 12/19/2007 5:33 PM (GMT -7)   

Thank you for all the replies  :-)   

Gumby44 I have a feeling that it is lactose intolerance but her test came back negative. Oh well like you guys said just wait and see.

 

I know it’s not a death sentence and I didn’t mean to come across like that, sorry.

 

I have been fine around her. I believe that parents shouldn’t show weakness in front of a child and they should always (even if they don’t) know what to do. Her number one priority right now is getting some juice, playing and hoping Santa will come early lol.

 

It’s just really hard on me right now because I want to know everything about this disease and all the symptoms but they are so different in everybody. Plus her daddy is a truck driver and on the road, so it has been hard on us both.

 

I will update this thread once I find out more in January.

 

Thanx again

 

http://i28.photobucket.com/albums/c236/verry_sweet/Dani/MakingPlaydough10.jpg


wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 12/19/2007 6:04 PM (GMT -7)   

I am so sorry you are going through this!  Poor little thing. :(  I'll say a prayer for her. 

However, I wasn't aware there was a blood test for Crohn's - I know I have never had one, it was a clinical disgnosis that changed from UC to Crohn's last year.  What did they tell you they were doing for blood work?  I thought they had to actually look at the colon to make a diagnosis.


verry_sweet
New Member


Date Joined Dec 2007
Total Posts : 4
   Posted 12/19/2007 6:16 PM (GMT -7)   

The doctor didn’t really tell me much and now she is away until the 7th of January. I called Dani’s pediatrician asking him more about it and he said that the paperwork faxed to his office showed high white blood count and that the blood work for Crohn's came back positive. The thing is that they did a stool test before and it came back negative for everything. I would think they checked it for infection. That’s all I know as of now though.

 

 I feel like I’m spinning in circles and I cant get an answer anywhere. That’s probably why I’m so worried and frustrated.

 


Smrtgrl96x
Regular Member


Date Joined Nov 2007
Total Posts : 47
   Posted 12/19/2007 8:02 PM (GMT -7)   
Im the mother of a 2 year old and I truly hope he doesn't have Crohn's like me! I can't imagine scoping a three year old!!!!!
I did know about the blood test for Crohn's and understand it is remarkably expensive.
Gas pains are excruciating. I hope the doc can really work with you to help her feel better!
Claudia

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 12/20/2007 3:59 AM (GMT -7)   
I may be wrong, but I think the blood test is done at Prometheus labs and they test for a genetic marker. I don't believe its a 100% accurate test. I'm sure there are others on here who know more about it than I do. It isn't just a test for elevated levels of infection.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 12/20/2007 5:59 AM (GMT -7)   
Hi and welcome to the board! As someone suggested, if you have to have a colonoscopy anyway, be sure they biopsy for Celiac. Just my 2 cents... I hope everything comes back negative for you!
EMom

Grateful for everyone's help here!

Mother to 15 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium and a good multivitamin.

Started The Maker's Diet in early September.


wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 12/20/2007 10:21 PM (GMT -7)   
Zanne said...
I may be wrong, but I think the blood test is done at Prometheus labs and they test for a genetic marker. I don't believe its a 100% accurate test. I'm sure there are others on here who know more about it than I do. It isn't just a test for elevated levels of infection.
I am very interested in this blood work.  I can't believe it is more expensive than some of the things I have had to pay for.  If there is a blood test how can I find out about where to have it done?  What exactly will it tell you?

Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 12/20/2007 10:35 PM (GMT -7)   
The test is from Prometheus labs. The most uncomplicated version is that there are certain "markers" for Crohn's disease and ulcerative colitis - some antibodies that the body produces against its own tissues - that can help distinguish if you have IBD, and if you have IBD, whether it is Crohn's or UC. They are fairly sensitive but not always 100% accurate. So maybe he ran the Prometheus test and that's what he found. Also, Crohn's patients tend to have high white counts, high C-reactive protein, and high ESR (sed rate), so maybe those were the ones that came back "positive."
Co-moderator - IBS Forum


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 12/20/2007 11:55 PM (GMT -7)   
Hi Hope your little one is still doing good . CD can be mild to severe so if she has it hpefully it will be a mild case. Staying hydrated is a good thing to as well as diet recommended by her DR. no foods such as popcorn,nuts and seeds. Sometimes we have to wait for results to tell us more about what is going on.I can understand how you find it hard with your husband away but we will try to help you the support here is very good. I started out learning about CD too and found lots of info here .Glad you are going to keep in touch and try not to worry too much for now at least she is getting some help now and that is the first step to caring for thiss disease. lol gail

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 12/20/2007 11:58 PM (GMT -7)   
Hi Hope your little one is still doing good . CD can be mild to severe so if she has it hpefully it will be a mild case. Staying hydrated is a good thing to as well as diet recommended by her DR. no foods such as popcorn,nuts and seeds. Sometimes we have to wait for results to tell us more about what is going on.I can understand how you find it hard with your husband away but we will try to help you the support here is very good. I started out learning about CD too and found lots of info here .Glad you are going to keep in touch and try not to worry too much for now at least she is getting some help now and that is the first step to caring for thiss disease. lol gail

verry_sweet
New Member


Date Joined Dec 2007
Total Posts : 4
   Posted 2/18/2012 2:28 PM (GMT -7)   
Hi I forgot all about this post. I was Googling my name and saw it so I figured I would update it.

Well my daughter is 8 now and doing fine. I was told my someone at some point that she would have been the youngest person in the world to have this condition so I cancelled all her tests. I started massaging her belly one night and found a lump so I just kept pushing it along for a couple of days. And then one day she screamed out hysterically while on the pottie to the point where all my friends ran upstairs thinking she got very hurt but it turned out that she was passing a blockage the size of a small orange. I had to help break it up since it was too large and she was torn and bleeding already. It was massive and looked like a marble with all different colors swirled in to it. So there you go. Months of torture by many doctors and too many tests to count for this 3 year old and they never caught it. Thank god I never started her on all the meds. And she has never had a problem since.

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 2/18/2012 9:05 PM (GMT -7)   
Wow, thanks for the update!
*******************
49 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day)Colazal (9 pills/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), mesalamine enema as needed. Gluten free as of 5/30/11.

killcolitis
Veteran Member


Date Joined Dec 2009
Total Posts : 2396
   Posted 2/19/2012 9:33 AM (GMT -7)   
That's good news and I'm glad your daughter is doing well but what caused the blockage? Is it "normal" for non IBDer to have blockages? If not, I'd want to have a scope just to be sure at some point but I'm very glad that she's well.

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 2/19/2012 12:47 PM (GMT -7)   
It is not unusual for a child to have a hard stool that is blocking passage of feces through the colon.
*******************
49 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day)Colazal (9 pills/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), mesalamine enema as needed. Gluten free as of 5/30/11.

killcolitis
Veteran Member


Date Joined Dec 2009
Total Posts : 2396
   Posted 2/19/2012 4:24 PM (GMT -7)   
kazbern, that's usually the first thing most peds suspect in children with IBD. They kept telling me that was what the case was with my daughter, that she had "overflow diarrhea" (not the case unfortunately) but with a positive promethius test (i'm assuming that's what it was) I would wonder. But then, might be good leaving well enough alone...
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