Flare or not a flare?

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Amy2

Joined
Mar 22, 2013
Messages
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16 year old diagnosed in March. Got down to 79 lbs. Quickly got up to 100 lbs, but has gone from 105 to 112 several times. Currently 106. Doesn't have much energy at all. Misses school 2 or 3 days a week, but doesn't have pain or discomfort in his stomach hardly at all and bms are perfect 6/7 days. About once a week, it will contain undigested food and he will feel "wiped out" for a few hours, EXHAUSTED.

He sees the doc on the 21st. Doc ordered fecal calprotectin test and blood tests, but son refused blood tests because he said he felt weak and they make him feel weaker, but did to the fcp (no results, yet).

He's been drinking a few Peptamen 1.5 every day, but still can't put on weight.

Still taking only Pentasa and vitamins.
 
Well, it could be vitamin deficiencies, even though he is supplementing, but without blood work you wouldn't be able to determine that. The Fecal Calprotectin should give you fairly good insight as to whether or not their is active inflammation.

Hope you find some answers soon.
 
I hate to say it, but blood tests will be really helpful. Do they really make him that much weaker? Is he dehydrated? I'm guessing something is up... but he's going to have to start with labs and I don't think too many doctors will take any action without back up.

When I hear exhaustion, I always think vitamin D, iron, or vitamin B12. Are those in the vitamins he's already taking?

Pentasa is a pretty mild med and didn't work for my son at all. And it's expensive :(
 
The amount of blood taken in a blood test is teaspoons. Not enough to make a difference is fatigue level.

It would help you and your doctor to understand what is going on if your son would get the bloodwork done before the end of the week. It is always SO much better to go into a GI appt with the labwork done so you can see what's going on.

Good that the did the FCP. Now try to get him on board with the blood work!

--Waiting on my own kid's results.....
 
Sorry to say that it sounds like he's just not absorbing. You can intake and supplement all you want, but if there's inflammation, it's not being absorbed, just wasted. Blood work is essential, my son gets woozy from it, more psychological really. Sounds like pentasa is not working well enough for him right now. Good luck with the doc visit!
 
He really needs blood tests period.


Weakness from that is not going to happen.

Feeling dizzy from a stick is another story.

I bring a hand fan- air flow helps
plus have him drink water during - it stops the response of "fainting" feeling from the brain. ( at least for me).


DS would not gain when he was inflamed. regardless of how much we supplemented.
 
I know he should have given blood, but he refused and he's almost 17. He said he will do it at his appointment on Monday. He doesn't feel faint or anything like that, but he has convinced himself (rightly or wrongly) that he feels worse after they take his blood - ususally several tubes.

We're going through a bad time right now. He's sick of it all. However, we found a therapist he LIKES and he is upbeat, after each session. :)

He weighed 108 today, so at least he hasn't lost anymore.
 
My son isn't great with blood draws (major understatement there) and his therapist has offered to go to the next one with him to talk him through it all. Might that be an option for your son?
 
He doesn't have a fear of needles or anything...he just doesn't think it's good for him to "donate blood" being so weak and underweight and he thinks that they take too much.
He's rebelled so little, it didn't surprise me that he finally said NO about something.
 
You did explain to him when you donate blood its like a pint.
Versus a few tubes .
They limit the amount of tubes that can be taken at a time by weight so the weakness does not happen .
Small children are only allowed a certain number of tubes.
Have his therapist talk to him.
There are things he can chose to control
Chosing to have a blood draw should not be one of them
 
He's convinced he feels worse and no one is going to talk him out of it. Yet, he didn't say he won't have it done, just that he wants everything to happen on the same day.

He is running the show, not me. He's basically an adult and that's how I treat him.
Going to war over when a blood draw takes place would not be smart.
 
MLP, I always have a magazine to wave over my son when he gets woozy, the air flow helps, the rooms are stuffy. But I'm bringing the spritz fan with me next time. So cannot believe I never thought of that before. Thanks!!!
 
Saw the doctor today and I could tell he thought my son is still doing well and not in a flare! :) I hope that is true. He didn't have the results of the fcp, yet. They took blood, etc. Son weighed in at 110 and the doctor said that was good considering my son weighed 79 lbs in March. He even said my son was "feeling good" where he'd previously felt scar tissue!!! :ylol2:
 
Son's #s all came back normal, so he's still in remission. Yet, after a week of feeling good and doing well, he had a very bad time in the bathroom, yesterday.
 
He's been doing pretty well, aside from some depression and low energy. He's seeing a therapist that he likes, once a week.

I know many on this forum believe that Pentasa is not enough to keep a person in remission, but if a person's #s are all good and they feel pretty good, are their chances good, that they aren't being secretly damaged?
 
Good to hear he is picking up physically Amy, I hope the therapist is able to help him through the down times. :ghug:

It is difficult to say Amy. Yes, Pentasa is a mild drug mean’t for mild disease but that is not to say that for some it does work well for very long periods. Realistically though, if the disease was moderate to severe from the outset then the chances of it alone keeping his disease in check would be very small indeed.
To assess where he is truly at and to be deemed in remission you really need to look beyond just clinical indicators and move to something more substantial, that being scopes and biopsy if the diseased area is in a accessible place, if not then further imaging via enterography and/or pill cam.

As hard as it is you need to be objective and if he continues to have issues that can potentially be put down to Crohn’s then push for more solid evidence that all is well. Unfortunately it is possible for all to appear well on the surface and still have inflammation festering away inside. It truly is the legacy of an invisible disease. :(

Dusty. xxx
 
DS was on Pentasa for about 18 months. During that time he seemed fairly well on the outside and his labs were slightly elevated but not alarmingly by any means. Not high enough for his former GI to take any action.

The next thing we knew we were sitting in the ER and talking surgery because the "mild" inflammation, over the course of two years, had taken its toll and built up scar tissue. He had ten inches of his small intestine removed and was finally pulled off Pentasa. We were only able to see the extent of the damage through an MRE.

So to answer your question... can they have good #'s and secretly be being damaged... in our experience, yes.

Maybe start with the least invasive fecal calprotectin? Just poop in a cup. It's easy and can put your mind at ease.
 
By his #s, I meant the fcp and blood tests. All just came back normal, not even slightly elevated. His symptoms are mild by just about anyone's standard on this board...occasional, mild stomach pain, occasional bms that contain undigested food. His low energy, may be chalked up to his weight; 113 and 5' 9 1/2" and the depression. He was pretty much abandoned by his family and most of his friends, too.

The directions on his Pentasa say to take it 3 xs a day...but he eats sporadically and he likes to take it with food, as he says it "helps the food settle". So, I asked the doctor if he should try to take it every 8 hours, OR with meals that might only be 3 hours apart and he said that he could take it with his meals.

He's seeing his dr in 3 months. What tests should I request? The only ones I'm really hesitant about are xrays and the pill cam. Heard about it getting stuck, too many times and he doesn't like to eat anything little and hard, like nuts. The pill cam seems like one big nut.
 
Nuts and seeds are generally not recommended for kids with Ibd .
Mre combined with a scope is what we have done with DS as well as a pill cam .
X-rays do not show much worth while.
If he is not gain in weight and still feeling horrid then are things that can and should be looked at.
I am not a big fan of monotherapy with 5-ASA for the reasons sited above in kids with crohn's.
Most if the time our kids don't look sick period and next thing you know they are facing surgery with or without a possible ostomy .

DS has had 2 ct , 1 mre and 4 scopes plus pill cam.
His disease is sneaking and blood doesn't tell the whole tale for him.
 
I know nuts aren't recommended, but my son takes it farther. He doesn't want to eat anything remotely like a nut, so I know he'd be very afraid of a pill cam and he seems to understand his body pretty well. Probably wise for him to fear it.

His weight has increased 43% since March, which the dr says is good, even though he's still very underweight.

Had a bunch of xrays in the hospital, so I want to avoid those as much as possible. I'm glad they don't show much. No reason to get them, then.
 
While a pill cam becoming stuck isn't ideal, it definitely pinpoints the problem if there is one. And if he is terribly concerned about it getting stuck you can request a dummy pill first. We needed a dummy pill to be sure A could actually swallow the large pill. She's only 8 but she swallowed it like a champ. Going for her second pill cam next week. It really is an easy test with low risk.
 
What about food allergies? Or Celiac? Or even a food intolerance of some sort?

(Sorry, can't remember if you've mentioned this before)
 
I don't believe that he could swallow the pill cam, even if he was willing, as the Pentasa are about his limit, size wise. On the SDC, he's been eating gluten free, though he's not been tested to see if he has Celiacs or any food allergies.
 
You don't have to swallow the pill cam, if he is unable to swallow the pill cam they can endoscopically place it.
 
^^^ yeah that
If you can swallow pentasa then a pill cam shouldn't be a problem.
DS had his placed during his last scope.
 
There have been several vitamin pills that he could not swallow, as they were big and hard, but not as big as the pill cam that I saw online. He can take the Pentasa because they are soft and slippery.

Yet, even if my son could swallow it, I don't see him being comfortable with the idea of a pill cam traveling through his gut. He demands that all of his food be soft or pulverized.

We need to consider other options.
 
Has he seen a psychologist/counselor to talk through his fears and concerns?
There is really no medical reason for his food to be pulverized unless he has a stricture or obstruction that needs to be surgically removed .
Have you discussed this with his gi or gp/ped ?
That is really concerning .
 
He's seeing a psychotherapist, although more for depression and anger issues. I think his concerns are reasonable and eating smoothies or well cooked foods seems reasonable to me, too. This all still feels very new to us.

He does not want surgery. I mean, he REALLY doesn't want surgery. A life filled with surgeries isn't worth living, for him. I know he can't and won't deal with a lot of physical discomfort. I wouldn't either, so I can't say the apple fell very far from the tree.
 

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