My 16 yr old son

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Worried Mom2
New Member


Date Joined Apr 2009
Total Posts : 4
   Posted 4/21/2009 5:20 AM (GMT -7)   
Hello...I am new to this site and am trying to make sense of what is going on with my son...I will give you the background..if anyone has had any of this happen, please let me know. When my son was 8yrs old he became very sick, he starting with throwing up and very tired all the time and he had major weight loss. I took him to many Doctors and no one had a reason for what was happening. At the age of 10 he was Dx with GERD and was put on many different meds, but it seemed nothing helped. I continued to take him to different Dr's because he was still continuing to loose weight and at this point had constipation. We finally took him to Mayo clinic at the age of 14 but they were not able to perform the needed test until the following week so we made the choice to go back to University of Chicago Hospital which is were we had been for 4 yrs. The dr there did a endoscope and colonoscopy and told us he had crohns..they were not able to get to the small bowel due to inflamation, so the Dx was made based on guessing? He did have multiple ulcers that started in the esophagus and went thru to the intestines. He was started on predinose as well as many other meds but again had no relief. Here we are 2 years later and he is still no better and has lost even more weight, he is 5'4 and weighs 89lbs. no diarreha and no stomach pain..Any ideas??????

Zanne
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Date Joined Apr 2005
Total Posts : 3763
   Posted 4/21/2009 5:55 AM (GMT -7)   
First, the diagnosis can be made by biopsy, did they do any? The ulcerations in the intestine are what would lead me to think CD. Ulceration in the esophagus could just be really bad GERD. But I think I would get a second opinion. The diagnosis may be right, but the treatment isn't working. Or the diagnosis may not be right since you say he has tried other meds with no relief. But I would want another doctor to take a look, possibly run some more tests. The longer something goes untreated the more damage is done, and sometimes the damage can't be fixed with medication. The constant inflammation of CD can cause scarring that no amount of medication will treat, and that could be what you are dealing with. And keep in mind, we are all so very different. What you read as the normal symptoms of CD, some of us never have. So no D and no stomach pain could just mean that is the way his body is, or that the disease is located in a different place.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


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


EMom
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Date Joined Aug 2007
Total Posts : 990
   Posted 4/21/2009 5:57 AM (GMT -7)   
During his colonoscopy they would have taken biopsies of the tissue to help them make a definitive diagnosis, so if they said Crohn's, it must be Crohn's. Also, I think folks here would tell you that you don't HAVE to have diarrhea or stomach pains to have Crohn's. Does he have any symptoms other than being somewhat small for his age? Is he currently on any medication? I'm assuming whatever it is, though, it's not working for him since he continues to lose weight.

I am so sorry you and your son are dealing with this! My son has had great success with the Specific Carbohydrate Diet put forth in the book "Breaking the Vicious Cycle", by Elaine Gottschall. There are many compliant cookbooks available and tons of online resources, as well, but I recommend the book to fully understand the reason for the diet. Perhaps it would help your son! Sadly, very few doctors are aware of the diet, or recommend trying it if they are. At least this was our experience at one of the top childrens' hospitals in the nation... sad

Welcome to the forum, by the way! I think you will find great support and lots of helpful information here. I hope you get the answers you need for your son very soon!
Mom to 17 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium, vit. D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 4/21/2009 6:04 AM (GMT -7)   
Hi I follow low roughage diet as meds ans surgery are helpful I also believe that easy to digest foods are easier on the system less work on bowels that already have a big task to achieve..Also a vitamin helps and many of us have low B-12 ..Ensure products and boost help with those extra calories when we need them.. Some of these things or all could be of help to him ..Let us know how things are going with him.. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~


FallColors
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Date Joined May 2007
Total Posts : 1220
   Posted 4/21/2009 6:14 AM (GMT -7)   
Hello Worried Mom2,

Welcome to the forum! You mentioned Pred and other medications didn't help. What else was he on, and what is he taking now?
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


Worried Mom2
New Member


Date Joined Apr 2009
Total Posts : 4
   Posted 4/21/2009 6:47 AM (GMT -7)   
Thank you all for your post..He is currently on Methotrexate 17.5 mg once a week, Prevacid 30 mg twice a day, multi vit a to z, 1200mg calcuim w/vit d and Miralax. He has been on several other meds including 6mp with no signs of improvement. He did have many biopsy taken but they were not able to penetrate to the terminal ileum due to inflamation, he did have a small bowel follow thru and a CT scan that showed thickening of the small bowel. I am just really confused on why he is continuing to loose weight as well as his last bone dentsity shows he has a very fragile spine is is at risk of fracture. We did take him for a second opinoin and when the new doc had his pathologist review the biopsy reports and look at the slides..he could not say that it was crohns..he said its a 50/50...so you can see why i am so worried!
 

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 4/21/2009 7:21 AM (GMT -7)   
has he only been on oral meds?
The issue I had with oral meds is that they were not being absorbed due to my disease being very active. Oral meds and suppliments do not work for me. I had to switch to injectable 25 mg Methotrexate to get any relief. It took at least 3 months on that injectable med to start feeling better and most need six months. I have most of my vitamen suppliments are injectable as well.
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Worried Mom2
New Member


Date Joined Apr 2009
Total Posts : 4
   Posted 4/21/2009 7:42 AM (GMT -7)   
Yes he has only been on oral meds. I wondered why he is not absorbing the Vit and Calcium...maybe he has to much inflamation? and thats why they are not being absorbed?


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 4/21/2009 8:11 AM (GMT -7)   
What about the IBD serology test. I'm sorry I'm not sure exactly what it is called, but it has a pretty good accuracy rate. Its a blood test that tells if you have IBD, then based on the fact that his small bowel is involved it would be CD not UC. I'm sure someone will be along who can give you the exact name and more info or you can do a search at the top of the page. But it could be that Navy hit the nail on the head and he's not absorbing his meds.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


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


Worried Mom2
New Member


Date Joined Apr 2009
Total Posts : 4
   Posted 4/21/2009 8:30 AM (GMT -7)   
He did have that blood test done, it it came up normal. Thats what is so confusing about this, it seems that all the test done have ruled out crohns but he still seems to have many of the symtoms with the exception of abdomial cramping, joint pain and diarrhea. Hopefully the latest biopsy he had done will confirm the dx. Thank you all so much for your input!! I truly do appreciate it.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 4/21/2009 9:38 AM (GMT -7)   
unfortunately crohn can distroy where ca and etc are absorbed along the intestines (for example we all know that b-12 is absorbed thru the terminal illum usually this is the first thing to go with crohns). Once those areas are damaged one may never get that ability to absord that vitamen (or etc) back (although we hope too).
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

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