Good for a year then ..BAM!

[jschreck]

officially diagnosed last year december 8. started on pentasa. (ddnt do anything for him). x mas eve feeling horrible. pain in his back, abdomen., tired, weak.
Xmas morning fever 103, to hospital transported him to childrens in Pittsburgh. Colonoscopy, endocsopy, steroids did the trick. Stayed in hospital 5 days., home on medication methotrexate inj once weekly. doing well... worked all summer full time to save for college, lifting weights, eats what he's supposed to. Looking forward to wrestling his senior year. (wants to give it his all). Starts feeling ill Halloween. Still not feeling well. Ct of abdomen showed inflammation with lymph nodes in abdomen, but not related to crohns., So what do we do.?? She thinks its viral and has to work it's course. (for a month??) Feeling worse each day, no energy, not able to practice with wrestling team., "wiped-out" can barely get from bed to couch., pale. what do we do???

 

[my little penguin]

Have you asked for a fecal caloprotectin test?
It can tell if there is more inflammation going on as well.
How are his labs( sed rate and crp)?
Vit d , iron etc levels?
Have you tried giving weekly updates - I have found calling more often especially when their not doing well helps.
Did they give anything else to help with the pain ?
Has he tried peptamen sometimes EN gives the maintence med enough boost to get over the edge.
They have plenty of samples at the GI office just ask.
Insurance may cover it or part of it if it is ordered through the local durable medical equipment company -
Is he sleeping well taking folic acid every day ?
If his weight increased or decreased he may need to bump up the folic acid.

 

[izzi'smom]

I am a huge on second opinions...did you go to CHOP last year? THey are in the top 3 childrens IBD hospitals. Cinci and Boston are close behind. I am sorry he isn't doing well. I have heard that IBDers are affected more often and for longer by viral issues. Has he gotten bloodwork lately?

 

[my little penguin]

Second cchmc ( Cincy) we took DS there twice for 2 nd opinions very good.
Pm me if you need more info

 

[Sascot]

I would agree on the second opinion! Even if it's nothing to do with the Crohn's it still needs checked out - a month of feeling ill is rather a long time! Hope you get someone to do something soon.

 

[Crohn's Mom]

Hi Js and welcome

Did the CT happen during an ER visit ?
Were the results read by his GI doc?

I think Mlp has the rest of my questions already asked ~ so I will leave mine to those two

I hope it is viral, however, I would get another opinion if something doesn't resolve soon.
Hang in there and best of luck !

 

[Scaryman]

I'm curious about his blood levels and sed rate etc.

 

[kimmidwife]

Definitly get a second opinion! It cant hurt and usually can only help. A month is to long for a "virus" I hate when doctors brush you off like that.

 

[Catherine]

Inflammation of lymph nodes in abdomen is common in the under 10 age group, not so common in older teens or adults.

For my child, with what is now considered a interesting presentation of crohn's it was who first thing to show up in testing and was left untreated for 6 months.

Has your GI seen these results? If not I would see if he can request them and give an his opinion.

 

[jmckinley]

I just wanted to offer some support and I agree with the 2nd opinion. While the SED and CRP will probably be elevated, fecal cal would probably be better from what I understand. Another opinion won't hurt and might save you months of struggling to get a flare under control. We were relaxed about Ryan's flare and it took us nearly a year to get it under control.

It bites when the med that works for them stops working! I hope it's just a virus, but even that needs to be nipped. IBD'ers don't necessarily have the immune function to nip a virus by themselves. The meds our kids take suppress that.

 

[Farmwife]

Yes the BAM feeling is alive and well here also.
I hope things can improve quickly.
Hugs to you both.

 

[DustyKat]

Hey jschreck...:hug:

How is boy doing? Is he feeling any better?

Dusty. xxx

 

[jschreck]

Thank u all for your support! Went to PCP started steroid. First day was great, then just felt "eh" now this morning felt horrible!! Feels weak, tired , pain! Ugh!
Labs showed elevated see rate, other levels normal, takes folic acid daily, mvi daily, probiotic. I hate that he s feeling like this!!! I just want to scream !!

 

[my little penguin]

Sorry he is still feeling bad.
Is the Gi aware of the latest blood work and the pred?
You need to keep them in the loop since the dose of pred prescribed by the pcp may be vastly different than the Gi protocol.
How many mg for how many days?
Typically you are on pred for a minimum of 5 weeks to many months when ordered by Gi.
3-5 days when ordered by pcp .
Plus if he is flaring it may take a while for it to work - all the more reason to talk to his Gi .

 

[izzi'smom]

UGH!!
Hoping that he starts to improve soon... (((HUGS)))