My son has crohns

[sweet291]

my son has crohns

my son is only 16 years old and has had a total of four flare ups so far. he was dignosed with crohn's about 1 year ago and hes in depress mode. he say he doesn't want to talk about it. Just last week he lost 13lb in three days. His sed rate was 38 and wbc 1.7. any advice hes on pentasa, mercaptipurine, protonix so far it was working but hes getting his ups and downs any advice for a worried mother


thank you for listening
sally rivera

 

[DustyKat]

Hi Sally and :welcome:

I'm so sorry to hear about your boy...:hug: Any age is tough to deal with this disease but when they are children and teenagers I think it is just that much more difficult.

Where is your son's Crohn's located?

How often is he having bloods taken? What do the docs say about his WBC count since it is low and he is on 6MP.

I hate to say it but he doesn't sound well controlled if he is having flares whilst taking the meds and 13lbs weight loss in 3 days is something I'm sure he can ill afford.

If he has small bowel involvement has he had blood levels done for B12, Iron Stores, Folate and Vitamin D?

Sorry for all the questions Mum.

Dusty. xxx

 

[sweet291]

Regional enteritis of small intestine with large intestine this dignosis was done in jan 2011 and his last endoscopy and colonscopy showed that the crohns inflamation spread to part of the stomache, the intestines and colon.
the docs is taking his blood on a weekly basis his sed rate was 38 on 1/25/2012
and its now from yesturday 23. his wbc went from 1.7 on 1/25/2012 to 2.0 on 2/1/2012.

not that i know of i have lab results copy in my hand what would that be

 

[sweet291]

it also says in the lab resukts that his ANISOCYTOSIS IS VERY LOW

 

[DustyKat]

They aren't a part of basic blood testing, so FBC, Liver Function Tests or UEC's. I know you have different names for those tests in the US but the tests I have suggested, if they have been done, should show up under the names B12, Folate, Iron Stores and Vitamin D.

Since your son has terminal ileum (regional enteritis) involvement I would ask that they be tested.

Did they change his meds based on his last scope?

Dusty. xxx

 

[sweet291]

when u say terminal what do you mean plz explain i am a newbie in this
we have an appointment next friday
in the lab his LYMPH is low, his Rdw is 20.5, his NEUT IS 1.0 low, his lipase 62 low

 

[sweet291]

doc thinks he might have an infection due to his wbc being 2.0

 

[DustyKat]

Oh my, I'm sorry, I hope I didn't scare you by using the term terminal. I was using it in the context of the last part of the small bowel where the ileum ends, the terminal ileum.

A low WBC can be caused by some viral infections but since your son is on Mercaptopurine I would have thought that might be a more likely cause...he may be too immunosuppressed. Most infections, particularly bacterial, would raise your WBC count, not lower it.

Dusty. xxx

 

[mnsun]

I'm not a doctor and I'm biased toward a more dietary approach but my advice would be:
--try a quality probiotic on an empty stomach every day (go to a large website retailer and read the hundreds of user reviews in regard to a product called: Jarrow EPS--take 2-3 a day or whatever works)
--take around 3-4 grams enteric coated fish oil (the brand I currently like is source naturals ultra potency--the 120 cap bottle is enteric coated)
--avoid caffeine and sugar (including fake ones) and do an elimination diet to find out whether dairy (milk especially) or gluten affect exascerbate symptoms. Everyone must make a cursory food diary eventually.
--consider LDN in addition to current medications, see the Low Dose Naltrexone thread in the Treatment section for useful links to show doctors. Any reasonable doctor should agree, "It couldn't hurt".

All the above are not immediate cure-alls. Probiotics may exhibit an effect within a day or two. Fish oil may take a few weeks. LDN usually doesn't START to noticeably work until over a month. Low Dose Naltrexone is a generic prescription, for an off-label use, running only $15 a month--doctors don't know about it and it is only in phase 3 of the drug approval process for use in Crohn's.

Dietary considerations are a necessity which your son will eventually realize whether or not he wants to now. Search the site for safe foods or low residue diets(just modify it to eliminate sugar and limit white flour) to start with. As I was diagnosed with crohns of the terminal ileum, MAYBE my post is relevant at: Your Story>Success Stories>MY Supps for MY Dis-ease

Hope this at least gives you something to think about, in the long run. Keep surfing! This site is a treasure trove for personal experiences you won't find elsewhere. Good luck!