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help! need advise about my son

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Crohn's Disease
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Posted 10/13/2009 10:33 PM (GMT 0)
Hello, instead of myself, I unfortunately need some advise for my son. He has been experiencing abd. pain on and off for at least six weeks now. Bowel movements seem to be normal? goes everyday or every other day. He has alot of gas. He looks pale with dark circles under his eyes. Weeks ago they did bloodwork and it all came back normal. Few weeks ago, pains were back so they did more bloodwork. H.pylori was neg. Celiac blood test was negative. Sed.rate was 11.  and platelets were higher than normal?  So, today with these results I requested that he be sent to the Children's Hospital because they said he will need to probably have scopes done etc.

My first question is about the sed rate? Is 11 very high for a twelve year old. The doctor said the normal high is 10. He is saying that these levels are indicating inflammation. What are anyone else's experiences with their child going thru this?  Emom, I know you have been thru alot with your son and I definitely value your opinion or anyone else out there that can help me ask all the right questions.

What tests did your children go thru that seemed to give the most answers?  I hate to think about him going thru all of these horrible tests, but I know they are necessary. I am quite knowledgeable when it comes to this DD or thought I was, but now that it is my son maybe going down the same road as me, it is really throwing me for a loop! 

Still waiting for the stool sample results to come back.  I couldn't change his diet drastically yet because they were ruling out celiac.

So now I am not sure about what to eliminate yet until the tests are all done. Or start him on the SCD diet now?  Or maybe just a low residue diet for now?  Any tips you can give me would be great.

Shelley

Posted 10/13/2009 11:47 PM (GMT 0)

No, it seems within the normal range.  The following link indicates that the normal sed rate for children is up to 13, but also says some labs indicate an upper limit of 20 for normal. 

http://en.wikipedia.org/wiki/Erythrocyte_sedimentation_rate

The link below indicates the normal range for males is up to 15, and for females it is up to 20.

http://www.medicinenet.com/sedimentation_rate/article.htm

Posted 10/13/2009 11:51 PM (GMT 0)
Since the BM's are fairly normal and he has a lot of gas, I imagine that they will call it IBS until they get a more definite result from their tests. The gas indicates bacterial action, so cutting down on starches and sugars should help. I am not sure that it is worth waiting until he is sick enough for a well defined test result. Maybe wait until after a C-scope and then start? I don't know if 6 weeks is long enough for the tests to reveal the proper diagnosis. Often people here have a lot of trouble getting a diagnosis and the doctors are not really concerned about it since they treat most bowel problems much the same way.
Posted 10/14/2009 1:09 AM (GMT 0)
Sorry, smile1967. I'm not very well versed in blood markers for Crohn's. (Thanks njmom for the answers!) In fact, our team of pediatric GIs told us they do not like to rely on blood work for much with regard to IBD...confused Also, with anemia, different labs "score" it differently (for lack of a better word) and give different results. Is it possible this would also hold true for SED rate tests? confused

That said, here's what we went through. My son was quite anemic for nearly two years as we tried to figure out what was going on (no IBD in the family). Ultimately, it was a high CRP (C-reactive protein, another inflammation marker) test that told us something was going on in addition to just the anemia. I know his SED rate was elevated at this time, too, but I can't remember what it was.

Following that blood work, he had a colonoscopy which gave the definitive diagnosis. Within a few months after his diagnosis, we finally beat the anemia. Exactly one year after his diagnosis, ALL of his blood work was completely normal (after about 9 months on the diet) and has been there since.

I take it your son is not anemic since you did not mention it. I wonder why he is pale with dark circles...? Sounds just like my son looked when he was anemic...

I would try what Keeper suggests. Try cutting out the starches and sugars. As soon as we did this, my son's horrific gas completely disappeared! He started taking a high-quality probiotic at that time as well, so perhaps they helped too. I hope this helps a tiny bit! I hope he feels better soon, too!
Posted 10/14/2009 2:29 AM (GMT 0)
My daughter was anemic too, for a month or two before we figured out this was Crohn's.  At that time, her C-reactive protein level was at 125, which is apparently very high and indicates inflammation.  Coupled with her symptoms, her ped. suggested Crohn's and off we went for the scope.  After prednisone for three months, her CRP came down to a 3 and GI Doc said bloodwork was perfect. Lately it's back to about a 21, again we have inflammation but not any where near as high as last spring.  Her other symptoms were: weight loss, loss of appetite, fatigue, diarrhea (waking her up at night), stomach pain (often!), low fevers, chills, body aches (esp. in her back between her shoulder blades).  I kept thinking it was some type of flu or stomach virus. 

No one knew for sure tho really...until the scope. Until then, I'd suggest keeping a food journal to try and eliminate what bothers him the most.

Posted 10/14/2009 5:48 AM (GMT 0)
I am assuming he is not anemic, due to the bloodwork results so far.  He is more fatigued lately than normal and is alot more achey especially in his shoulders.  But you usually just assume that he is a normal athletic boy. I did not mention yet that last year, in Nov/Dec he had the same type of symptoms and was seen by a pedatrician. His bloodwork was a bit elavated and then it went back down to normal by the time she saw him and she then ordered an abd. ultrasound which showed inflammed lymph nodes in the stomach.  He was feeling better, so they left it at that and saw no more reason for further investigation unless symptoms reoccurr, so here we are now again.

I will definitely cut out the starches and sugars, and see if that helps.  I have already started him on a probiotic weeks ago and we will get the food journal back out again and see if we can see a trigger. Should I cut out wheat completely and potatoes and rice too?

Thanks so much for your input, it means the world.

Shelley

Posted 10/14/2009 12:15 PM (GMT 0)
Personally, I would try to cut one thing at a time and watch symptoms.  Gluten are anything containing wheat, oats, barley or rye.  If it's casein you're after, then read labels very very carefully (for gluten to if you go that route) because dairy is hidden everywhere in things like whey protein etc.  Potatoes and rice are acceptable foods on a gluten free diet, but not on SCD.

It does seem that a lot of sweet foods trigger a tummy ache for my daughter. As do tomatoes, steak, fried foods, soda.

Posted 10/14/2009 12:40 PM (GMT 0)

smile1967 said...
I will definitely cut out the starches and sugars, and see if that helps. I have already started him on a probiotic weeks ago and we will get the food journal back out again and see if we can see a trigger. Should I cut out wheat completely and potatoes and rice too?

I think you could try cutting just wheat at first, if you prefer not to go 100% SCD. It will surely help and it would be a way to gradually begin...

That said, some people with Celiac have found that a wheat-free diet isn't quite enough, and ultimately find total relief on the SCD, cutting all bad carbs. (This makes me wonder if even the experts completely understand Celiac disease! sad)
Posted 10/14/2009 3:25 PM (GMT 0)

I will cut out the wheat and sugar first. He had a coke at thanksgiving dinner on the weekend, so I am definitely seeing a pattern there now! I made two big patches of soup yesterday, so that should be some good comfort food for the next few days!  Thanks for the reply. Hope your children are well.

Shelley

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