It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Crohn's Disease / Ulcerative Colitis Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 12-13-2007, 11:19 PM   #1
Veteran
(female)
 
Join Date: Dec 2006
Posts: 367
Kel123 HB User
Unhappy My 4 Year old May have CROHNS--anyone else have experience with such a young child?

Hi,

My daughter and I (and whole family) have been on an exhaustive journey through tummy troubles and I am wondering if anyone can relate or share experiences.

She is 4 years old and had salmonella poisoning this past August. We have no idea where she got this from. No one else was sick. She was hospitalized with bloody diarrhea, dehydration, vomiting, and doubled over abominable pain. A CT scan showed severe infectious colitis, and enlarged spleen, enlarged liver, and free fluid in her colon and gutter. Her stool had lots of wbc's and was positive for salmonella. Her labs were all out of wack. She improved after 4 nights in the hospital and was sent home. She has since had probems with her stomach hurting. She complains of pain in her stomach just after eating every meal (right around her belly button) she usually poops (soft, not liquid diarrhea--pretty normal looking) and then seems to feel better. This happens 3 times a day. She is woken up at night by stomach pain sometimes. I have struggled with wondering if this is behavioral, or for real. Whe have been to the Dr. several times about it. Her labs are pretty normal now except elevated sed rate 15, and c-reactive protein 18. The stool is negative for salmonella. The GI dr. did a calprotectin level on her stool (supposedly an inflammatory test for the gut) and it was 1133 (normal is less than 50!!!) we had a colonoscopy and upper endoscopy on Monday that showed a lot of nodules in the colon and the duodenum was swollen and bumpy with an inability to see the veins. The Dr. said he thought it looked abnormal to his eye. He thought the colon and everywhere else looked ok. He took 20 biopsies from the esophagus down to the bottom. I forgot to mention my daughter has had chronic apthous mouth ulcers since she was a baby. You can always count on seeing at least one or 2 and sometimes up to 6 in her mouth at all times. The dr. is thinking celiac disease at this time. So.......biopsy results are in and it is definitly not celiac disease. No evidence at all. BUT her colon biopsies show inflammation as well as the terminal ileum. (where the dr. thought looked good) The area in the duodenum biopsied normal.

Could this be inflammation from the Salmonella still 4 months after the fact?? Could this really be crohns?? The dr. said the biopsies are pointing to IBD__crohns but he is not 100% and doesn't want to start meds or label her yet. I am sick over this.

We have her scheduled for a small bowel follow through with barium and crohns antibody testing next week. I am just scared. She is such a happy little normal child and I hate to have all this on her shoulders at such a young age. Her other symptoms are 3 pound weight loss, and decreased appetite. Thanks for reading this incredibly long thread. Any insight or similar experiences would be great. My Dr. is wonderful and I trust him and know he is doing everything possible, but the unknown is so hard to deal with!

 
Sponsors Lightbulb
   
Old 12-14-2007, 06:50 AM   #2
Senior Veteran
(female)
 
Join Date: Sep 2005
Posts: 658
Brocallie HB UserBrocallie HB UserBrocallie HB UserBrocallie HB UserBrocallie HB User
Re: My 4 Year old May have CROHNS--anyone else have experience with such a young chil

That's very troubling, indeed. As I mentioned earlier, I am active in the autism community (have an affected dd). Many of the kids have the same symptoms as your dd, and the theorized cause is active infection in the gut, usually from measles virus from the MMR (biopsies have proven it.) Most of the affected kids are put on gluten free/casein free diets which allows gut healing and often dramatic resolution of autistic symptoms. BTW, if the salmonella triggered Celiac, it may be too soon for the blunting of the villi to be evident on the biopsy--she could still have Celiac. Dietary enzymes, probiotics are also used and help, along with a product called Lauricidin.

I understand your dd is neurotypical, but gutwise she sounds so familiar. You might want to do some sniffing around online on the "autistic gut" or enteropathy. Dr Arthur Krigsman out of NY and TX works extensively with the affected kids so reading up on his work may be useful as well.

From one mom to another, I am so sorry your dd and your family is going through this. I know how scary and hard something like this can be. Please keep us posted and I'll be thinking of you all.

Last edited by Brocallie; 12-14-2007 at 06:51 AM.

 
Old 12-22-2007, 08:05 PM   #3
Veteran
(female)
 
Join Date: Dec 2006
Posts: 367
Kel123 HB User
Re: My 4 Year old May have CROHNS--anyone else have experience with such a young chil

Brocallie,

Thank you for the encouraging words and all the great information. I am sorry to hear about your daughter, it is great that you are so involved in the autistic community. I did research what you talked about previously. I think the wheat and gluten free diet could definitely benefit my daughter, and I may try it once we are done with all the diagnostic tests. She had more bloodwork drawn on Tuesday for crohns antibodies (ANSCA AND ASCA tests) and has a barium upper GI with small bowel follow through sceduled on Thursday the 27th. If that looks ok, the Dr. wants to do the video endoscopy pill. He is very suspicious of crohns now, but wants to be sure before labeling her as such. I guess her biopsies showed crohns characterisitics. I don't know if I mentioned she is also allergic to eggs. The biopsy results were not allergy related though. Her pain comes and goes, and I just want to get to the bottom of it. I will probably start her on probiotics also. I am also concerned about it being early to test positive for celiac. She did have the celiac bloodwork panel, and that was also negative. Right now, I wish we were facing celiac and not crohns, but we will deal with whatever we are handed. I just want her better . Thanks again for everything.

Kelley

 
Old 12-23-2007, 11:31 AM   #4
Senior Veteran
(female)
 
Join Date: Sep 2005
Posts: 658
Brocallie HB UserBrocallie HB UserBrocallie HB UserBrocallie HB UserBrocallie HB User
Re: My 4 Year old May have CROHNS--anyone else have experience with such a young chil

Hugs. Hang in there. I understand the helpless feeling of seeing your little one suffereing. I also hope it's celiac, but remember, she can still be gluten intolerant without the specific celiac antibody. There is a lab in Dallas, called Enterolab that can do EXTENSIVE testing to help you determine the precise problem. You can send in samples from anywhere for testing.

Good luck.

Last edited by Brocallie; 12-23-2007 at 11:35 AM.

 
Old 12-23-2007, 08:51 PM   #5
Senior Veteran
(female)
 
Join Date: Dec 2006
Location: western us
Posts: 7,267
ms_west HB User
Re: My 4 Year old May have CROHNS--anyone else have experience with such a young chil

I have no idea where you are located but Dr. Theodore Bayless @ John Hopkins Unversity is awesome in this area. He saved my life. I was actually misdiagnosed and treated with Crohns for 4 years and Dr. Bayless got to the bottom of the issues and diagnosed me when no one else could. Good luck and I will lift your precious child up in prayer.

 
Old 12-23-2007, 08:56 PM   #6
Junior Member
(female)
 
Join Date: Aug 2007
Location: usa
Posts: 14
juujuubug HB User
Re: My 4 Year old May have CROHNS--anyone else have experience with such a young chil

my daughter was diagnosed with crohn's in the summer she turned 12 in oct so i pray for your daughter but the doctor told me it is a good thingthat we caught it so earlier most of the time people don't kow until they are older and by then they have more damage done it is hard my daughte takes 11 pills a day and ccould not have a lot of food like kids want no caffine no pizza no salsa no corn and other things we are sstill finding out so good luck and let me know how the test goes i love the gi doctor that my daughter has he is so good

 
Old 12-24-2007, 07:06 AM   #7
Veteran
(female)
 
Join Date: Dec 2006
Posts: 367
Kel123 HB User
Re: My 4 Year old May have CROHNS--anyone else have experience with such a young chil

123dietdrpepper,

Thank you for the information. I actually live in Richmond Va, and I will probably seek another opinion from John Hopkins. I know they have a pediatric IBD research team there. If I may ask, what were you actually diagnoses with?

JuuJuubug,

I am so sorry you are also dealing with this. I am at the point now where I just want to find out what it is so we can make her feel better. I heard it is much more common in the pre-teen to teenage years. I am feeling lucky that if this is what it is, we have caught it early, and can watch her very carefully. I will add your daughter to my prayer lists also. This is so much for a little child to have to deal with. I love my GI dr. also, and he is being very careful because he doesn't want to diagnose her and label her as crohns unless he is absolutely sure that is what it is. He doesn't want to be wrong and then have her deal with the consequences of it long term (insurance wize) Thank you for your post. I hope your daughter stays well. Did you have the ansca and asca labwork done in California to confirm the diagnosis? (crohns antibody testing) What other tests pointed to crohns if you don't mind me asking. Thanks so much. I am the type of person that does better the more info I have. Have a happy holiday.

Kelley

 
Old 12-24-2007, 02:50 PM   #8
Senior Veteran
(female)
 
Join Date: Dec 2006
Location: western us
Posts: 7,267
ms_west HB User
Re: My 4 Year old May have CROHNS--anyone else have experience with such a young chil

Wow! John Hopkins would be a great option for you. Dr. Bayless saved my life. I was in my early 20's and 5'4" and went down to 90 lbs. I actually had endometroisis with involvement of the bowel and bladder. It caused the bowel to adhere to the abdominal cavity. Another doctor treated me for 4 years for Crohns and I did not get better.Now we know why - it helped being treated for the correct disease. I pray that your son is properly diagnosed and does not in fact have this disease.

 
Old 12-28-2007, 02:22 PM   #9
Veteran
(female)
 
Join Date: Dec 2006
Posts: 367
Kel123 HB User
Re: My 4 Year old May have CROHNS--anyone else have experience with such a young chil

Well, I have an update on my daughter....Christmas eve day she had 8 episodes of bloody mucousy diarhea and severe stomach cramping. It came and went all day. I felt so bad for her, but selfishly did not want to take her to the ER and ruin her christmas. I fed her a very bland diet and rested her bowels. Christmas day she still had some pain on and off and more stools than usual. Thursday she had an upper GI with small bowel follow through. It was abnormal and showed thickened folds in the duodenum and inflammation in the terminal ileum. There results are consistent with her clinical picture and biopsy results of chrohns. To throw a loop in things...her ANSCA and ASCA crohns antibody testing from California came back positive but looked like more of an ulcerative colitis pattern. The Dr. has put her on Asulfidine 3 times daily and metronidazole. I have another appt in 2 weeks for blood tests and a full blown sit down talk with the GI specialist.
Does anyone have any suggestions on dietary restrictions? The main things I should avoid for now? Any help would be greatly appreciated. Thanks

Kelley

 
Old 01-01-2008, 07:17 PM   #10
Junior Member
(female)
 
Join Date: Aug 2007
Location: usa
Posts: 14
juujuubug HB User
Re: My 4 Year old May have CROHNS--anyone else have experience with such a young chil

i hate to here about the test came back with what you was hoping not to her .You ask what test was ran on my daughter he did 3 different blood test at first 1 was to see if she was allergric to gultin i thibk and the other 1 not to sure and the crohn's and ulcerative colitis so he ran the scope down and up her from that he could tell it was not ulcerative colitis and like you said your doctor wants to make sure what is is before he puts down crohns our doctor told us the same thing so he did a biospoy of her intenstinse and it came back as crohns i live in alabama but he is a pred. gastr. doctor and a very good 1 we go back tomorrow 1/2/2008 for a check up so wish us luck and as for what she can eat my daughters doctor said we just have to do a trial and error nobody is the same .My daughter can not have caffine,corn pizza but she can eat cheese pizza who knows why ,she can not have spices like chilli ,tacos, and steak sauce and we are still learning more so let me know how things go.Tomrrow when we go back i am going to ask about my daughters slepping cause she can not sleep not sure if it has anything to do with the medsshe is on or what but she won't go to sleep until 4:00am sometimes and by then she is crying cause she is so tired goodluck and i will letyou know how things go tomorrow

 
Old 01-02-2008, 01:33 PM   #11
Veteran
(female)
 
Join Date: Dec 2006
Posts: 367
Kel123 HB User
Re: My 4 Year old May have CROHNS--anyone else have experience with such a young chil

Juujuubug,

I hope your appt goes well. My doctor also tested for celiac disease (wheat and gluten allergy) We also had her allergy tested and found out that she is allergic to eggs. How long until the medication showed some improvement? I think my daughter is feeling better. I think she has a high tolerance to pain because she is so used to her tummy hurting all the time. The bloody diarhea has subsided, and she is going much less than before. Is your daughter in remission now? when she reaches remission, will she still have to be on medication to keep in remission? These are some of the questions I have. It is hard to keep on top of medicating her three times a day. I feel like I am always giving her something. Thanks for all the information. I feel so alone in this. My daughter is so young at 4 years old to have this that I worry about the long term effects with her. I am sure that 12 years old is a very difficult time to be diagnosed as well. Independence and pre-teen problems are hard enough without having to restructure your life around a chronic illness. I am glad that I found you and we can relate. Thanks again.

Kelley

 
Old 01-03-2008, 04:13 PM   #12
Junior Member
(female)
 
Join Date: Aug 2007
Location: usa
Posts: 14
juujuubug HB User
Re: My 4 Year old May have CROHNS--anyone else have experience with such a young chil

Kel

The appointment went good other then him having to give her meds. to sleeep cause she can't sleep at all there are times she is up until 4:00am .We don't go back until june so thats good we were going every4 weeks then 3 month as for is she in remission i think so like you i am still learning about this disease but i think i am figuring it out because when i read that they would have flare ups i had no idea if i would know but believe me you will now when she is having 1. So are they for sure that your daughter has crohns? If so what meds is she on my daaughter takes nexium for 1 week then prevacid the next week she can't stay on 1 all the time causeit does not work for her she takes asacol 2 tablets 3 times a day ,methscopolamine 2 tablets twice a day and at the beginning she was onpredinsone for only 10 days thank goodness i am also glaad that i have found someone we a child will this take care andkeep me posted.

 
Old 01-04-2008, 05:41 AM   #13
Veteran
(female)
 
Join Date: Dec 2006
Posts: 367
Kel123 HB User
Re: My 4 Year old May have CROHNS--anyone else have experience with such a young chil

Hi Juujuubug,

Well it sounds like her crohns is under control..that is good. My daughter is on metronidazol 3 times daily and azulfidine 3 times daily. She takes the liquid compounded form because she is so little. She definitly seems better after starting the medication. She is not stooling as much, and she is complaining very little about her tummy hurting now. I am relieved. Steroids are next if her bloodwork comes back bad on Tuesday. She definitly has IBD, thay are still sorting everything out now. Her bloodwork looked like more of an ulcerative colitis pattern, but her biopsies, upper GI, colonoscopy and endoscopy along with her clinical picture and the mouth sores she gets all look like crohns. She is being treated for crohns now. We have another appt Tuesday afternoon so I will know more then. I hope your daughter gets some much needed rest and stays in remission. Take care
Kelley

 
Closed Thread




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 07:12 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!