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storm
New Member


Date Joined Oct 2007
Total Posts : 13
   Posted 10/26/2007 12:01 PM (GMT -7)   
HI
 
not sure if i should have posted this here but didn't really know where else to ask.My daughter who is 9 first started getting just below the belly button tummy pains almost 2 years ago,after going back and forth to the doctors she was sent to see a peadiatrician,first blood tests showed a ESR level in the 40s all other tests were normal ie coeliac,aneamia etc.Second blood test for ESR taken a few months later were normal.Tummy pains came in waves and could happen any time of the day,no energy,sleeps a lot,muscle pain,joint pain,mouth ulcers and has also lost 4kg in weight since january.5 weeks ago she had an endoscopy and colonoscopy,the gastro came to me after and said he found ulcerations on the endoscopy and thought this was her problem.Today we went back for results of biopsys they were all normal,the gastro had put in his first report after he did the procedure that he thought it was chrones but as results are normal pead does not think she has it.Could anybody tell me how reliable the biopsy results are or any ideas on this would be greatly appreciated.
 
thankyou

Post Edited (storm) : 10/26/2007 1:15:29 PM (GMT-6)


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/26/2007 3:25 PM (GMT -7)   
Hi Storm Welcome to HW and if you have questions please ask we have many caring people here and will try to be helpful .I am not sure what the test are reading as someone else might have an idea.You did not say if she had the small bowel checked and CD can occur from mouth to anus. The weight lost certainly needs looking into and the ulcerations would be a sign of something. Have you had her B-12 checked we need to keep that up it helps .Keep us posted. How is she eating and do you have her on low residue diet which helps some of us Ensure also helps but not sure it is recommended for children. ? lol gail

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/26/2007 3:30 PM (GMT -7)   
Ps. I would go with the GI on this one as they are the specialist in that field. lol gail

storm
New Member


Date Joined Oct 2007
Total Posts : 13
   Posted 10/26/2007 10:44 PM (GMT -7)   

Hi

thankyou for your replies.The small bowel check would that have been the colonoscopy?Ulcerations were found on the endoscopy so there must be a reason a 9 year old as them,H.pylori negative etc.Her dietician has asked me to put her on a high calorie diet because of the weight loss,this was said before she had above procedures.Very interesting you mentioned B12 as i am def in B12,ferritin,Folate and i asked for her to be checked and they have all come back ok.Her tummy pains have seem to ease off at the moment is that common in chrones ,this has happened before and then they came back confused

She gets ulcers in her mouth all the time and they are so painful and her dentist said it could be a warning sign of something lower down.After her colonoscopy the pain she had was the same as her "normal" pain ,same place everything and she was in pain for 10 days! Thankyou for all your suggestions and please if anyone has anything else to add feel free.

 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/27/2007 8:00 AM (GMT -7)   
Hi Storm yes the pains with CD can come and go and ulcers in the mouth are common. Sometimes they also suggest several small meals during the day .The colonscope checks the large bowel and where it connects to the large one. What if any treatment did the GI suggest for the ulcerations found ? Hoping someone will help with the bio .report but like a lot of people say CD can effect from mouth to rectum and not all areas are checked. Hope she is feeling better. lol gail

DebbieCrohns
Regular Member


Date Joined Nov 2005
Total Posts : 174
   Posted 10/27/2007 4:13 PM (GMT -7)   
Hi Storm,
 
Welcome to this great website, though I am sorry you have reason to be here.  I am really sorry your daughter is going through what she is and hope she can be helped to feel good all the time real soon.
 
A colonoscopy looks primarily at the colon and maybe the very end of the small intestine.  An upper GI with small bowel follow-through looks at the upper gastrointestinal tract through the small intestine.
 
I have a 25 year old daughter who was diagnosed with Crohn's 7 years ago.  Another board I have found real helpful, in addition to this one, is dragonpack, which is geared toward parents of children with IBD.  The URL is http://www.dragonpack.com/ibdsupport/parents/
 
Good luck and please keep us posted.
 
Debbie in Chicago

storm
New Member


Date Joined Oct 2007
Total Posts : 13
   Posted 10/27/2007 4:17 PM (GMT -7)   

Hi gail

No treatment at all was suggested for the ulcerations.Thankyou for the tip on several small meals i will do that.I am going to take her to see family GP next week and see if i can get a bit more information on where we go from here and to see if they can speed along pead and gastro getting together and sorting all this out.I am also waiting for all blood test copies to be sent to me so i can check all levels myself in B12 etc . the weight loss is very worrying she eats very well and does not have the energy to run around so she should be putting weight on. i am wandering if this could be that she is not absorbing things correctly has anyone got any ideas on this please.

thanks

 


storm
New Member


Date Joined Oct 2007
Total Posts : 13
   Posted 10/27/2007 4:41 PM (GMT -7)   
Hi Debbie
Thankyou for the link.May i ask what test confirmed that your daughter had chrones?I am so confused at the moment as you can see from my first post Gastro thought it was chrones when he did the endoscopy but as tests came back normal peadiatrician does not think it is.Is there a test that i could ask to be done that would say one way or another if she does have it?I really appreciate all your advice.

thanks

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/28/2007 9:43 AM (GMT -7)   
Hi I am going to move this up to see if others have any ideas. lol gail

storm
New Member


Date Joined Oct 2007
Total Posts : 13
   Posted 10/28/2007 11:06 AM (GMT -7)   

Hi

Thankyou gail.

My daughter has had a really bad day today,terrible pains in her tummy,vomiting.We telephoned the emergency doctor and he said he thinks the reason they won't say it is definately chrones is because all her blood test vitamin levels are within the ref range.To see her crying in so much pain is agony for us.

 


SoCalDad
New Member


Date Joined Oct 2007
Total Posts : 5
   Posted 10/28/2007 11:52 AM (GMT -7)   
Jeez Storm sorry to hear your Daughter is hurting

Mine is 16 1/2 w/ severe Ulcerative Colitis for 2 years and recently they figure has Chrons also

She does not vommit...

D w/ B on a regular basis (Diarreha with Blood)

A Stage 1 diet for few days might help..(Liquid Diet no milk)

Our Doctor at Childrens Hospital never did give us a copy of their Pediatric Nutritional Program diet..yet a year into it when my Daughter showed severer anemia..recommended we put her on Stage 1 diet..

We had no idea what she was talking about..Doc was like "OH I did not give you a copy of the diet..??..)

We now see a different Doctor there..But find Nurse Practitioner to be very helpful for day to day stuff..

Anyone have a link to "Official" IBD Diets

Post Edited (SoCalDad) : 10/28/2007 12:55:56 PM (GMT-6)


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/28/2007 7:08 PM (GMT -7)   
Hi Storm Is she eating seeds ,nuts, corn. ,popcorn anything that that might be triggering the pain certian foods can cause us to have pain. IBS can also cause lots of pain. Has her pedt. ever been called in when she is having pain? Sometimes I wonder if they know what kids go threw . Hope she feels better soon. lol gail

KaNDiCe21
Regular Member


Date Joined Oct 2007
Total Posts : 106
   Posted 10/28/2007 8:23 PM (GMT -7)   
For sure take her to a stomach specialist (GI.) They had a hard time with my diagnosis the biopsies could not be for certain. They ordered a camera pill and Small bowel follow through to confirm. That maybe something that you would like to mention. Its a good test and takes lots of pics for them to see exactly what is going on. Does she get sick after she eats? It sounds like a lot of the same symptoms that I have, but more tests need to be done to make sure. Good luck to your baby!
DX: Crohns in March 2007
Meds: Remicade


KaNDiCe21
Regular Member


Date Joined Oct 2007
Total Posts : 106
   Posted 10/28/2007 8:24 PM (GMT -7)   
P.S. GI's know a lot more about the stomach than any pediatrician, so listen to them first and foremost!
DX: Crohns in March 2007
Meds: Remicade


Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 10/28/2007 11:57 PM (GMT -7)   

I'm sorry to hear your daughter is suffering so much.  She needs to see a pediatric gastroenterologist.  Her regular pediatrician should be able to recommend one.  If she has a history of anemia and intestinal ulcerations and mouth ulcers and weight loss, there's a bunch of red flags.

Not sure if you're super-familiar with the way the digestive system works but it's helpful to understand it as much as you can.  It can be kind of confusing.

The pathway goes like this: mouth, esophagus, stomach, small intestine (consists of the duodenum, jejunum, and ileum), large intestine (also called the colon - consists of the cecum, ascending, transverse, descending, and sigmoid colon), rectum. 

The small intestine is super long and loops and bends around all over the place.  This is where most of your digestion and absorption of nutrients takes place.  When you get a "small bowel study" (also called a "small-bowel follow through" or "barium swallow"), they are taking several x-rays of the small intestine after the patient drinks a barium milkshake, which helps the x-ray pick up on all the loops and bends in the small intestine; they can look for narrowing in the intestine this way, which might indicate inflammation in there.

Another way to image the small intestine is with an EGD or upper scope; the only disadvantage here is that the scope can only go as far as the duodenum, so it's not a very reliable study unless you're particularly interested in the esophagus, stomach, or upper duodenum.

A colonoscope is a flexible tube inserted up the rectum into the colon; like the EGD, there's a camera attached to the end, which allows the doc to see the interior of the colon and check for ulcerations or any other signs of inflammation. 

I hope this helps you navigate the terminology a little better...

Anyway, like I said, it's definitely time for her to see a pediatric GI.  There are SO many things that can go wrong in there and it might take more testing to figure it out.  Nothing is ever absolute in the GI system (life would be much easier if docs could tell us definite answers, wouldn't it).  Best of luck and keep us updated.

 

 


Co-moderator - IBS Forum


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 10/29/2007 10:47 AM (GMT -7)   
Hi Storm, Crohn's can and does go naturally into remission from time to time, so it can be hard to diagnose.
 
SoCalDad, there is no foolproof IBD diet, but many people swear by the SCD diet (Specific Carbohydrate Diet). You can find the book about it, "Breaking the Vicious Cycle" on Amazon.com along with plenty of testimonials. The website for info about the diet is www.breakingtheviciouscycle.info
 
Yet another diet targeted at IBD is the Maker's Diet. http://www.makersdiet.com/public/default.aspx


Daughter (20) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress and needing more fiber but landed in hospital in 3/06 with cramps, vomiting, stricture. Now in remission with Entocort 3 mg (one pill), SCD multivitamin, yogurt, vit D3 1800IU, 900+ mg calcium, 50 mg B complex vit, 25 mg iron. No longer on SCD diet.   
 


storm
New Member


Date Joined Oct 2007
Total Posts : 13
   Posted 10/29/2007 11:27 AM (GMT -7)   

Hi

thankyou for all your replies.

Littleone is much better today.The pain stopped so suddenly she was so glad when it did,so was i!This is the first time she was sick, but i think it was because she was in so much pain,as soon as the pain stopped so did the sickness.

No anaemia has showed up in any of her blood tests,so thats a good sign,but also think this is why they are stumped on why she is like this.Ulcerations were found in the stomach or duodeum.We are unable to put her on any diet at the moment as dietician wants her on a high calorie diet because of the weight loss.They did not get a good look on the colonoscopy as the meds they had given her to clear her system did not work at all.So now just got to wait until pead gets back to us after he speaks to gastro.

thanks again for all the replies

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