H's Brother

No, I should have explained that better. GI was trying to explain to me that pain level does not always match what he sees visually.
But you are wonderful to be irritated by the idea he might say IBS.
Dd started with Aza once biopsies were returned. I wouldn't allow ds to be given AZA because of risk. That drug scares me more than biologics.
I wonder if what he saw today could be something else. Scope prep? He was very mellow about it. Said "if" a few times...
 
Scopes done. He has small ulcers in his colon, not too many, and some changes in the TI.
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That sounds exactly like my daughter's first set of scopes. She had ulcers through her colon - from her rectum till her cecum. Her TI was friable and bled when they biopsied it.

Biopsies showed granulomas and chronic inflammation, as well as acute inflammation. Every single biopsy showed inflammation.

Our med situation was complicated, because M was already on a biologic for her arthritis, but it didn't treat IBD. Since she was already on a biologic, her rheumatologist felt it would be best to switch to one that treated both diseases. So we switched to Remicade.

She was also on MTX for her arthritis.

We added Entocort because she had abdominal pain and Remicade took a while to kick in.

So essentially we treated her Crohn's very aggressively and I am SO glad we did. Scopes done 8 months later looked so much better. Her colon looked "perfect" and her small bowel looked slightly red but mostly normal. Biopsies were NORMAL except for in her TI where there was mild inflammation.

She has been on biologics since then and we have been lucky enough to avoid complications like abscesses, fistulae and strictures.

I am not sure what your med options will be since you're in Canada but if you're not willing to try Imuran (and I can understand why), then probably MTX will be used if the doc is not willing to try a biologic yet.

Sending HUGS :ghug:. Given H's history, I would prepare yourself for a Crohn's dx.
 
Glad I miss understood
I would think mtx as well as a first step
Given family history and you caught it early
When used as a monotherapy
Mtx typically is shots
Only pills are used for combo with biologics

More hugs your way
I hate the @ifs
 
I wanted to add - my daughter takes Levsin for belly pain. It is an IBS med but it works well for crampy belly pain. I just wanted to mention it because whatever he is put on will probably take a while to work and your poor kiddo has been in pain for quite a while now.

The other option for pain relief would be EEN or steroids. Those would probably work a lot better. Do you think he'd be open to trying EEN?
 
Maya142 said:
I wanted to add - my daughter takes Levsin for belly pain. It is an IBS med but it works well for crampy belly pain. I just wanted to mention it because whatever he is put on will probably take a while to work and your poor kiddo has been in pain for quite a while now.

The other option for pain relief would be EEN or steroids. Those would probably work a lot better. Do you think he'd be open to trying EEN?
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At this point I think the pain he thought was stomach pain must be TI or other intestinal pain since his stomach looks fine.
He used to love drinking his sister's shakes(foreshadowing?) I think he could do EEN but now I want to wait for MRE so all the diagnostics are in..
He's lately moody so would hate to live with him on steroids but we do what we must.
Does Levsin work for any part of the system?
 
Levsin works sometimes on intestinal cramping
Other kids use bentyl
Ds does better on bentyl
But has tried both
It’s hit or miss
Both are anti spasmodics

Definitely wait till after MRE before changing anything
Dx first
treatment afterwards
Better to know what your treating

Sometimes once kids start to feel better even in steriods
They act better sorta thing
It’s hard to be up beat when you feel horrid and no one tells you why

Poor kiddo

Hope you get answers quickly
They really make you wait a few weeks for biopsy results

When my otherkiddo (non ibd) had a scope for possible ibd
Ds GI has them give him the biopsy results the next day
GI figures one kid with Crohns was difficult enough
He didn’t want us to have to wait longer than necessary

Normally out patient biopsy results are given within or less than a week
Inpatient scopes within 24 hours

The past 4 scopes have been inpatient so very spoiled
Next one is outpatient
 
They told me 6-8 weeks! But they put a "rush" on it so if I'm lucky ...2 weeks.
It was 12 weeks for H!
 
Hugs, hugs and more hugs!

Even if it was suspected...... Your never ready!

Not much I can say but offer an ear if you need one.
 
Levsin does work for intestinal pain. I mentioned it mostly because I figured he can't start EEN or steroids till you have a firm dx. So in the mean time, maybe Levsin could help. My daughter's pain is in her TI based on where it is located (lower right quadrant).

Steroids may make him moody but sometimes they have the opposite effect. If the kiddo is feeling better, then they become so much happier. Sometimes my daughter is SO happy because her pain is FINALLY better and is bouncing off the walls on steroids, but other times she cries easily becomes moody.

It also depends on the dose for her.

Hang in there - 2 weeks is not too bad...especially considering for H you waited 12 weeks!! We only have to wait a week for outpatient scopes. Sometimes two or three days.
 
Glad you are starting to get some answers, even if it's not necessarily the answers that you wanted... Hope the biopsy results come back soon--it's so hard to wait.
 
OK. I will let you stick your head in the sand a little longer. When I had my "you are getting old time to screen for cancer" scope, I had ulcers in my TI and my colon. The GI was concerned because of my girls' history so took biopsies and it was all normal. She chalked them up to prep. I have actually heard that story from a few people. BUT they were all non symptomatic.adults.

What did the GI mean by "some changes in the TI"? Has he been scoped before? What kind of changes?

I don't like IF and I don't like waiting. HUGS!

T was "mild" an went right away to MTX. 20mg. She did injections for a while and then moved to oral. It takes a while to work fully so most GI's have you attack the disease with either EEN or steroids while waiting.

Sorry if I am misunderstanding anything or missing anything. Reading and typing in the dark with severe jet lag, I will catch up again tomorrow.
 
A's scopes are never "impressive". Mild acute inflammation and the elusive lymphangiectasia. It doesn't look horrible, but it's certainly life altering. We were offered bandaids like Bentyl and Levsin but they didn't help. IVIG was life changing and Cellcept fills in the gaps.

He may or may not have Crohn's. I think it's important to remember that Crohn's is probably one of the more common diagnoses he could have. It certainly sounds and looks like more than IBS. Sorry Mama.
 
I totally understand about keeping your head in the sand. I was the same way when kiddo number two was diagnosed. Sending you lots of hugs too!!!
 
In the category of things we forget.....

If you can, show up to mre with very little in their stomachs and with them hungry. It helps get the barium down.
 
We received the news today that C has Crohn's (H's brother). 8 weeks of EEN plus 20mg Mtx injections to start asap.
He's handling it ok. Truthfully we've been really distracted getting the tb skin test and chest xray done, buying the shakes and so on.
I'm bribing him to do EEN so he's on board.
I saw it coming so just in taking care of business mode now. I think the shakes will help his abdominal pain.
Tomorrow we talk to the dietician, I guess he'll need about 8 plus calorie shakes a day, he's about 78 lbs. Does that sound right?
I'm keeping him home a few days to get used to the dietary change.
 
Oh--so sorry about this news, even if you were expecting it. I hope that there is some relief in at least knowing what it is and being able to start treatment. Good luck with EEN; hope it brings quick relief to his symptoms.
 
Great big hugs
Even if you know it’s coming
It’s still sooo hard to hear
I think the calories depends more on age than weight
“Plus” versions are harder on the gut
Might be easier to start with the regular version first
Since he already has a lot of abdominal pain

What is his age ??
 
I am so sorry! Sadly, I know how you feel. Like you were somehow sucker punched. It's not fair but on the brighter side of things, you are way more educated this time around and IDK if it will be the same between a brother and sister but it does give them a "special" bonding it is nice that at least one person in the family knows exactly how they feel.

If he is anything like T, he is probably relieved that it wasn't all in his mind, it is real, people will take him seriously and now he can get treatment.

You know what is best for your children but for mine I think staying home would have been torture. They rather liked the distraction of school when they were on EEN. The first few days they didn't go to the lunch room and got special privileges to drink their shakes in the guidance office.

I am really so sorry you have to travel this road again.
 
Sending HUGS!! It is really tough to have a second kid diagnosed. When my younger daughter was diagnosed with arthritis, I was shocked. We went to multiple doctors looking for other explanations - just hoping it was something else.

Eventually, we had to accept that it was arthritis.

The advantage is that you know the disease and the ups and the downs. Of course, every kid is different, as you already know. My two girls both have AS but they have different "problem" joints and have responded to meds very differently.

But they do have a built in support group right at home ;).

In terms of formula and EEN, my daughter was never able to do 100% EEN, but did do 85% EN, 15% food. She went to school while doing it. At that point she was so sick and miserable, she didn't even want to eat.

But he may also have diarrhea while his body adjusts to the formula, so keeping him home may not be a bad idea. My daughter was not able to tolerate Boost/Ensure - caused diarrhea and nausea and belly pain. So watch for that (I know H tolerated them, but C might not). We switched to Peptamen Jr which was good for a while and then eventually Neocate.

Good luck. Hope the MTX works quickly and doesn't cause side effects. My older daughter uses Buzzy for the shots and says she can't even feel them, so if he's nervous about the shots, you could try that.

Sending hugs!!!
 
my little penguin said:
https://www.nhlbi.nih.gov/health/educational/wecan/downloads/calreqtips.pdf

So about 2000 at least

https://www.nestlehealthscience.us/brands/boost-kid-essentials/boost-kid-essentials-1-0

So about 9 a day at 240 calories each
More if he is hungry ;)
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We can do 9 of the regular shakes!I was thinking it would be about that of the high calorie shakes because last time I talked to a dietician he was eating 2500 calories a day. Which is insane, but kids are different. He eats like a full grown man!
 
crohnsinct said:
I am so sorry! Sadly, I know how you feel. Like you were somehow sucker punched. It's not fair but on the brighter side of things, you are way more educated this time around and IDK if it will be the same between a brother and sister but it does give them a "special" bonding it is nice that at least one person in the family knows exactly how they feel.

If he is anything like T, he is probably relieved that it wasn't all in his mind, it is real, people will take him seriously and now he can get treatment.

You know what is best for your children but for mine I think staying home would have been torture. They rather liked the distraction of school when they were on EEN. The first few days they didn't go to the lunch room and got special privileges to drink their shakes in the guidance office.

I am really so sorry you have to travel this road again.
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You know, that is happening with the kids. C was always really mean to H because she is the next younger kid from him and on top of that was perceived to be special and favored because she was sick. But lately, something has changed for the better. Now they will be travelling overnight with me to the city for GI appointments-lots of bonding time.
And he probably is relieved. That was the one thing he would say to me at night alone, "Mom, what if I have a scope and nothing is there?"
I think the only thing that really bothers me right now is the road ahead. I can deal with injections and tests and travelling so far for appointments. And all the weird stuff that comes up literally ALL of the time. But when I read here about the older kids, surgeries, emergency room, missing opportunities....but there is no point borrowing trouble.
I feel really bad for kids who are navigating this as young adults.
 
Maya142 said:
Sending HUGS!! It is really tough to have a second kid diagnosed. When my younger daughter was diagnosed with arthritis, I was shocked. We went to multiple doctors looking for other explanations - just hoping it was something else.

Eventually, we had to accept that it was arthritis.

The advantage is that you know the disease and the ups and the downs. Of course, every kid is different, as you already know. My two girls both have AS but they have different "problem" joints and have responded to meds very differently.

But they do have a built in support group right at home ;).

In terms of formula and EEN, my daughter was never able to do 100% EEN, but did do 85% EN, 15% food. She went to school while doing it. At that point she was so sick and miserable, she didn't even want to eat.

But he may also have diarrhea while his body adjusts to the formula, so keeping him home may not be a bad idea. My daughter was not able to tolerate Boost/Ensure - caused diarrhea and nausea and belly pain. So watch for that (I know H tolerated them, but C might not). We switched to Peptamen Jr which was good for a while and then eventually Neocate.

Good luck. Hope the MTX works quickly and doesn't cause side effects. My older daughter uses Buzzy for the shots and says she can't even feel them, so if he's nervous about the shots, you could try that.

Sending hugs!!!
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I think the kids who have done Humira think Mtx is a walk in the park! He'll get used to it. I do have a buzzy around here somewhere...
I think we did the denial thing for awhile. We went through all of the GERD meds and so on. I get that. It's part of the process. It's interesting looking back on it.
He has to do 100% EEN. No option for partial food. If oral doesn't work, then tube. Or we can go to steroids.
 
Well that's probably true :lol:. Compared to Humira, MTX is easy!

I hope he is able to do EEN - fingers and toes crossed. If he needs a tube, it won't be so bad. It really seems a lot more intimidating than it is.

Good luck :ghug:.
 
Also remember on the een not all kids tolerate kids boost
Depends on how much damage is inside
Ds couldn’t and had to drink peptamen jr
The good news is those are 250 calories per shake

The other thing Ds was eating a ridiculous amount prior to dx
He wasn’t absorbing much
But needed far less calories in peptamen jr since his body had to work less to absorb them

We started with 8-9 and just gave him more if he was hungry
He did drink all of his
But only after 3 days of tears
Then he could drink it quickly
No issues
A little longer time to get used to oral neocate jr

About a week
Again now no issues

Good luck

It’s tricky with two woth the same illness
Mine both have asthma
But meds and how their bodies react to things is completely different
That was hard to figure out in the beginning
 
Pilgrim said:
I think the only thing that really bothers me right now is the road ahead. I can deal with injections and tests and travelling so far for appointments. And all the weird stuff that comes up literally ALL of the time. But when I read here about the older kids, surgeries, emergency room, missing opportunities....but there is no point borrowing trouble.
I feel really bad for kids who are navigating this as young adults.
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I think you have a good ability to stay positive but I really want/need to say that you can NOT go by what you read on here. This is a very small and skewed subset of the IBD population. Most are on here for a reason. They are having trouble and need advice. A lot come here, get what they need and then skip off happily into the long term remission sunset. I dare say an overwhelming majority of IBD parents don't even know a forum like this exists. Many kids do well. Look at O! 6 years with disease and she is doing great. Sure she has been in a two year funk with the disease but even with that she is at college and thriving.

As for the missing things, well I think you know what I say about that. Everyone misses something for some reason. Some kids miss the big game because of the flu, some kids miss a season because of mono and others miss the year because of a torn ACL. There are other countless surgeries that could pop up at any time for anyone. O missed two years of track and had surgery because of her hip. Had nothing to do with Crohn's.

The future is bright and your kids have a well IBD educated mama! Tight control! Watch the biomarkers! Look inside! Don't get too set on one therapy that you miss the right time to switch. You got this!
 
I think the only thing that really bothers me right now is the road ahead. I can deal with injections and tests and travelling so far for appointments. And all the weird stuff that comes up literally ALL of the time. But when I read here about the older kids, surgeries, emergency room, missing opportunities....but there is no point borrowing trouble.
I feel really bad for kids who are navigating this as young adults.
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I have one of those VERY complex young adults who has missed out on a lot. She has had a really tough time in the last few years and has been diagnosed with many additional conditions. Ironically, her Crohn's has been one of the easier conditions to manage.

But anyway, M has gone back to college after taking a semester off to have two surgeries. Yes, her life is VERY different from a typical college student's. She is on about 18 meds and has a color coded excel spreadsheet as a medication schedule. I sent her with 4 pillboxes and an additional big box full of PRN meds and feeding tube supplies and a whole lot more medical stuff.

It is her third day back at college and she is struggling. Not sleeping well, very tired, having trouble remembering all of her meds :eek:. But even then, she is so happy to be there. And academically, she LOVES it and is thriving.

Her life is different and there is a lot we have to work on to get her feeling better and to make her life more "normal."

But even in very difficult circumstances, she finds a bit of joy. Today she texted me to tell me she had "the best chocolate chip cookie EVER" ;).

These kids are incredibly resilient. They grow up to be smart and empathetic and compassionate.

And, as my daughter puts it, she has a lot of diseases but she got three kittens because of them ;). So that's "a pretty great deal" according to her!!
 
Sorry about his dx but he has an amazing mum!

As to calories.
Grace is 71 lbs and almost 9 (this Sunday).
On full EEN she needs about 8 boost boxes.
However, during a full fledged flare, I don't think she can do boost.
Not broken down enough.
 
Hopefully it goes well tonight. GI ended up prescribing 25mg injections. It seems like a high dose to me.
I have Ondansetron to give him to prevent nausea.
He tried school today but called before first snack break. He said pain, but I wonder how much was his anxiety about drinking formula at school.
 
It's usually the max dose given. I would give Zofran half an hour before you give him the shot. We gave the shot at bedtime, so they'd sleep through the worst of the nausea.

Did the doc prescribe Leucovorin by any chance? It's folinic acid and is used as a "rescue drug" when MTX is given in much higher doses as chemotherapy.

They only use it with "high" doses of MTX (by high I mean high by Crohn's/arthritis standards, not high by cancer standards) because it does make MTX a little bit less effective - not a big deal at a high dose.

It really helped both my daughters. Rheumatologists tend to use it more than GIs though.

Both my daughters had side effects at 25 mg of MTX - nausea, vomiting, dizziness etc. For both girls, we had to reduce the dose. For my younger daughter, that didn't help enough and we moved on to different meds. My older daughter is still on MTX, on 15 mg by injection.

Good luck!
 
He tried school today but called before first snack break. He said pain, but I wonder how much was his anxiety about drinking formula at school.
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Could he take an opaque water bottle, so no one has to know what he is drinking? He could also call it a protein shake - older boys use them to bulk up ;). That might make it more acceptable.
 
Big hugs
We used hydroflask
https://www.hydroflask.com

You can’t see what in them
And they keep it really cold
We just put it in a lunch box with an ice pack

But given he just started een it could take a while
Ds did 25 mg injections of mtx
Got very ill
Second lecovorin given 12 hours after the shot
For ds it still wasn’t enough to keep him from being extremely sick so he was switched back to 20 mg woth oral tablets

But definitely worth trying


I now my kiddo took weeks to feel even a tiny bit better on een
Even with 6-mp
 
Maya142 said:
Could he take an opaque water bottle, so no one has to know what he is drinking? He could also call it a protein shake - older boys use them to bulk up ;). That might make it more acceptable.
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It is funny you said that! He talked to his best buddy tonight and was explaining that he has to drink "Boost drinks" and the friend literally said, "Like protein shakes? Cool!" You are on to something!
 
my little penguin said:
Big hugs
We used hydroflask
https://www.hydroflask.com

You can’t see what in them
And they keep it really cold
We just put it in a lunch box with an ice pack

But given he just started een it could take a while
Ds did 25 mg injections of mtx
Got very ill
Second lecovorin given 12 hours after the shot
For ds it still wasn’t enough to keep him from being extremely sick so he was switched back to 20 mg woth oral tablets

But definitely worth trying


I now my kiddo took weeks to feel even a tiny bit better on een
Even with 6-mp
Click to expand...
He likes the idea of a thermos bottle. Too bad I will need to buy four because even with the high calorie formula he will go through four over the school day. Today the calorie count was 3135.
He had the shot and is in bed. I gave him a bucket. If it is tough tonight, I will call about Leucovorin on Monday.
 
They are 16 oz thermos
So only two for school
Ds drank 16 oz at a time

As far as getting sick on mtx
Remember you tend to get a honeymoon period for the first shot or two
Until they get sick
So if you call Monday at least you can have it on hand if you need it

Good luck
Hope he sleeps well
 
Ds also said they were protein shakes at the lunch table
His best buddies knew what they really were but
His average school friend protein shakes ;)
 
Depending on your kiddo
Ds drank 16 oz for breakfast
16 oz for lunch
16 oz after school
16 oz for dinner
Then more as needed before bed

Please let the GI office know he is needing 3135 calories
That is concerning given his age
His body may just be trying to make up for earlier losses

Or his body could be having a hard time absorbing the whole proteins

Either way just let the GI office know
 
my little penguin said:
Depending on your kiddo
Ds drank 16 oz for breakfast
16 oz for lunch
16 oz after school
16 oz for dinner
Then more as needed before bed

Please let the GI office know he is needing 3135 calories
That is concerning given his age
His body may just be trying to make up for earlier losses

Or his body could be having a hard time absorbing the whole proteins

Either way just let the GI office know
Click to expand...
Yeah, it seems really odd to me. Plus he would have had more before bed if I had allowed it.
I will call on Monday, thanks for commenting on that, because I otherwise would have just watched and waited.
 
Yeah, he may need Peptamen Jr or something that is easier to absorb. Though after Boost, getting him to drink it might be tough!

Hydroflask also has 32 oz bottles. Those are pretty big, but my daughter has the 24 oz one and it's not huge and fits easily in her backpack. She loves them - they keep liquids very cold.

When my daughter was trying her best to drink Neocate, we also got her this: https://www.amazon.com/Zoku-Slush-Shake-Maker-Blue/dp/B00EVHFK7Q

It makes sort of a slushie. She could not bear the taste of Neocate, so we were trying to make it as cold as possible. If he has to transition to Peptamen Jr or a nastier tasting shake, you could try that.

You aren't supposed to freeze formula but I'm not sure about a slushie. my little penguin - any idea?? We didn't count it in her calories if we made a slushie - we were just trying to get her used to the taste and trying to get her to drink it without getting super nauseous.

Peptamen Jr is definitely MUCH better than Neocate so if you do have to switch, don't panic. My daughter hated it at first, but it was drinkable. She got used to it and over time, started liking it.
 
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It is funny you said that! He talked to his best buddy tonight and was explaining that he has to drink "Boost drinks" and the friend literally said, "Like protein shakes? Cool!" You are on to something!
Click to expand...

I work as a teacher in a high school...teenage boys are always talking about protein shakes :lol:!
 
No slushee
They can’t be frozen or taken below 32 F which you need to do to freeze it
When Ds has to start drinking neocate
We took a glass filled with ice and dumped neocate in that so it got cold but not slushee cold
Peptamen jr we got stuck with only one flavor
They only carried vanilla
So we added chocolate syrup to it at first
Later he drank it as is
They make a chocolate version
We just couldn’t get it at the medical supply place that covered it

If he likes chocolate and has to switch
Aim for chocolate
It helps cover the taste
Neocate jr Lp drinks orally the chocolate version
Couldn’t even sip the other versions
Hugs
 
Yes, what age? J was does 6 bottles of Peptamen 1.5 and handles it really well even when she can't handle Ensure.
 
Question. He is really constipated from the formula and it's causing more pain. I will up his water intake tomorrow. Meanwhile any suggestions? Is there anything I shouldn't give him?
 
Miralax should be fine. But it will take 3 days to work.

We use Milk of Magnesia for my daughters when we need something to work faster. That usually works by the next day. With my younger daughter, we give it at night and she has a BM in the morning. She doesn't have cramping with it - it's gentler than something like Dulcolax. Our GI said using it occasionally was fine and when her constipation was pretty bad at diagnosis, she was allowed to take it daily since Miralax did not work for her then.

On the bottle, it says 6-11 year olds can take it. Generally I'd run something like that by the GI but not sure you'll be able to reach him/her on the weekend? Does your hospital have a GI on call number so you can reach a pediatric GI?
 
The other thing is his body may need to get used to all liquid and less by product (waste)
Ds takes miralax daily - higher doses of miralax daily when he is all formula
When Ds gets comstipated to cause pain
His GI allows us to use up to three doses spaced throughout a single day
This really gets things moving
So always be prepared and check with your GI first
Since my kiddo is 14
Don’t remember what age that we first started that
But I know it was a while ago
So definitely check with his GI first
 
my little penguin said:
The other thing is his body may need to get used to all liquid and less by product (waste)
Ds takes miralax daily - higher doses of miralax daily when he is all formula
When Ds gets comstipated to cause pain
His GI allows us to use up to three doses spaced throughout a single day
This really gets things moving
So always be prepared and check with your GI first
Since my kiddo is 14
Don’t remember what age that we first started that
But I know it was a while ago
So definitely check with his GI first
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We were moved up to two full doses a day. Things moved but unforfunately he had no warning. So I guess it's still leakage around a solid mass? IDK. Fortunately, he was home when it happened. He hasn't been to school for a week and a half.
I'm supposed to call GI office and let them know how it's going today. So we'll see what they say.
 
They are giving us the Pred option at 40mg. Anyone have this dose with their kid? We are having a miserable time with EEN.
 
Aw pumpkin! Yes. That is what O did at dx. she was inpatient so got her prednisone via IV but when discharged she was on 40mg.

Good luck! I hope this helps him!
 
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We have done 40 mg, but my daughter was older. Expect side effects - puffy face, very hungry and you may even have mood-swings. My daughter becomes upset really easily on 40 mg of Pred and very moody.

But it worked really well for her!
 
40 mg here at age 7 at dx
But to put it in perspective Ds was given 60 mg at age 5 for asthma flare

Hope the steroids help

Poor kiddo
 
When I told C he had to try going to school for the afternoon block, he went into his room, slammed the door, threw his pillows and blankets plus everything off the tops of the bookcase, and yell-cried.
When I dropped him off he said, "I hate you."
I hope it's the pred. But it's only day two.
 
Ooooh! He is a feisty one. This to shall pass.

Prednisone could also have the opposite effect and make a kid giddy happy. It does with O...but then again that could just be because they are so happy to be feeling better that they are happy.

Hopefully as soon as it kicks in and he is feeling better his mood will even out.

What is the taper schedule? How long do you have to stay at 40?

Sometimes, I find the power of suggestion works in kids to our benefit but also against us.

For example: With Methotrexate, doc tells a parent and kid, "could make you nauseous, feel like a truck hit you etc". Kid sits around waiting to be nauseous and voila they are sick to their stomach. I had this with O. She started taking mtx and came downstairs the next day and said, "hey mom? When am I supposed to start feeling nauseous?". So after that I asked the GI just to let me know the possible side effects to watch for. My kids don't know anything and I admit to white lying here and there and saying, "hey possible side effect of this med is it makes you happy". Voila! Happy kid. I will pay for their therapy with all the quarters I rack up for the I hate you's!
 
Lol!

40mg for 1 month then 5mg per week taper.

It was like that for H with Budesonide. Suddenly she could reach the high bar, go hiking, carry her little sister on her back. She felt like a superhero.

C is a mommas boy, and while he can be moody, I haven't been the target until now. He probably just feels awful.

I'll try the power of suggestion. Good idea.
 
My kid is a mix - she has times when she is SO HAPPY to be feeling better, she feels like she can do everything (and then she does too much and pays the price the next day). But other times it has made her very moody.

One time she cried in Target because I offered to carry her crutches because she was having trouble walking with them.

Another time she cried when she couldn't find matching socks.

So she doesn't really get mad, she gets sad ;).

Fortunately she is old enough to later laugh about her tears.

That is quite a high dose for a little kid...I would definitely expect other side effects too (though I agree with CIC, no point in telling kids about them, especially young ones. Teens should know, I think). Expect hunger - he may even say he is STARVING, weight gain, puffy face/cheeks. We also always have stomach pain and reflux with steroids. Adding a PPI or Zantac can help.

Hopefully you will also see decreased pain and increased energy soon too.

We haven't ever done 40 mg for a whole month - just a week or 2 then tapered by 5 mg. Yikes! It could be a long month!
 
After 2 weeks post diagnosis the constipation resolved! So happy.

He still has so much pain. We're on 3rd week 25mg mtx, and day 9 pred 40mg.

Both the kids had MRE last week, so I am waiting for "the call".
 
Great news!!!!! Our MRE reports came back and both H and her brother C showed no signs of Crohn's in the small intestine! So they're both dealing with disease confined to the Terminal ileum and some right side disease.
It is a huge load off of my mind! It's terrible to wonder what's lurking between the reach of the scopes.
So glad it's nothing. :)
 
That's great!! My daughter is the same - nothing in her small bowel except terminal ileum.

Has C's pain improved at all on the Prednisone? Some times pain takes a while to go away, especially if there has been inflammation for a long time.

How is he doing with the MTX?
 
Maya142 He is still in so much pain. This is the part I don't get. GI said to me that the amount of damage on scopes was pretty small. The ulcers were small. He didn't think C had pain levels that correlated. If we had seen more damage in small intestine it could make sense but I don't know what to do with him. This is day 11 pred.
We are going to family counselling this morning. Just a local person at our clinic. I am going to ask her to give him some ideas for pain management.
As for the mtx - we do it on Friday and he has loss of appetite on Saturday and some nausea but ok on Sunday. Pretty normal. He doesn't want to take Zofran. Not sure why.
He is really moody on pred, but I figured out it's mostly hangry. Once he eats he is much better and more reasonable. I'm a home bakery. Have a muffin, kid!
 
Is he taking a PPI with the steroid? He is on a higher dose and a little guy. Prednisone can cause some gastro issues. O's doctor usually gives her omeprazole when he puts her on prednisone.

Sorry if you mentioned he is on one. I am on my phone and it is acting up and not letting me check past posts.
 
A's scopes never looked severe but her pain was. I think people just perceive things differently. Over time she's learned to deal with it and carry on. Your son will too. Hugs!!
 
Maya142 He is still in so much pain. This is the part I don't get. GI said to me that the amount of damage on scopes was pretty small. The ulcers were small. He didn't think C had pain levels that correlated. If we had seen more damage in small intestine it could make sense but I don't know what to do with him. This is day 11 pred.
We are going to family counselling this morning. Just a local person at our clinic. I am going to ask her to give him some ideas for pain management.
Click to expand...

It could be pain amplification from long term inflammation. Then you get much more severe pain compared to the inflammation/damage found. For some kids, it resolves on its own over time - as the inflammation goes away, it lessens, and then slowly it goes away. It does take time.

For other kids, it becomes a chronic issue.

The best things for it are keeping things are normal as possible. It sounds awful and cruel to send a kid in awful pain to school, but it will keep him distracted. If he's at home, he is just going to dwell on the pain. Exercise also really helps - it releases endorphins which are natural painkillers. It doesn't have to be intense exercise - swimming or walking or anything he loves to do that keeps him moving.

Being distracted in general helps - when my daughter is in a lot of pain, she finds something to focus on. Sometimes it is TV, or a book, or her cats. Anything that gets her mind off the pain.

PT can help get him active and they may also have some pain management ideas. I'm sure you've already tried heat and ice, but what about a TENS unit? Massage?

And of course, seeing a psychologist, particularly one who specializes in pain and chronic illnesses can REALLY help. They are hard to find, but many big children's hospitals have them. Some do phone or skype sessions after the initial session.

We drive 1.5 hours each way to see my daughter's psychologist and it is 100% worth it. We saw a regular psychologist before going to one who specialized in chronic illnesses, and my daughter really felt like it did not help. But she was much older than your son and very angry about having to see a psychologist.

For kids who stop being functional - miss a lot of school, stop wanting to see their friends, stop extracurriculars or doing things they love, stop sleeping - then an intensive pain rehab program is your best bet.
 
Maybe we figured out some of the pain. He was sent for an abdominal xray which showed that he was still severely constipated- and this is after things seemed semi-normal again with output.
GI said three caps of miralax per day for three days.
Then maintenance of one cap per day for awhile plus bowel training.
He's on day three and it's working.
We start the pred taper today, thank goodness.
 
Be careful of “bowel training”
When it comes to constipation associated with Crohns
We were told that is never a good idea
Basically very traumatic for the kiddo woth daily enemas
It works for kids who are holding their bowels as toddlers
But Crohns with constipation kids are not “holding their bowels”
Their gut just doesn’t move right
We have done miralax daily for over 7 years
As long as we keep on top of things
Keep things soft (Bristol 5/6)
Then you can avoid things like rectal prolapse
You don’t want rectal prolapse from trying to live what won’t moce

Once you have it
It’s there for life unless they have surgery
It gets worse with an inflamed bowel

Our second opinion place suggested the bowel training
When they didn’t know about Ds Crohns yet

Our regular GI promptly explained why that would be devastating to Ds


We were also told surgery for rectal prolapse on a Crohns kid would result in a an ostomy due to the gut trying to heal the rectum over and over again

Glad you found the source of the pain

Yes we tried all the usual constipation tricks
Prunes pears juice fiber etc...
It only resulted in more pain and worsening the rectal prolapse

We also do 50% diet as formula and 50% as food
For ds this works

Constipation is extremely painful and debilitating
It does not get respect in the Crohns world by many GI
It can damage structures inside

Our thoughts are miralax is the least offensive drug Ds has to take


I hope your Ds feels better soon
It takes a while to calm the nerves down afterwards
But daily miralax can help
Tremendously
 
My Little Penguin what dose does your ds take every day? We were told a cap maintenance.
Thank you again. I will be wary when discussing the constipation with the GI team and with the "training".
It surprised me how constipated he became. At first it was EEN that caused the problem. He was backed up into his small bowel on MRE.
Then we switched to pred and returned to his regular high fibre diet.
A month later and after seemingly good bristol 5's he is still severely constipated.
It was hard to compute but what you say makes sense.
Crohn's constipation. But not stricture related, etc.
 
We use a kitchen gram scale
He used to need 17 g(1 capful a day)
Currently it’s 10 g
If Ds goes more than a day without a bm we increase
If he gets pebbles we increase
His MRE was clear last week no stricture fistulas etc...

The thing they don’t tell you
Is constipation is linked to small bowel Crohns
Not diarrhea
But every single training GI (resident /fellow etc..)
Is shocked Ds has constipation as part of his Crohns

We found high fiber makes Ds hurt worse
So much so our gi has him on low fiber

As part of Ds Crohns he has gastroparesis
So that may be playing a role as well in Ds case

Our gi has figured out we know Ds best
And let’s us titrate miralax up and down so that he consistently has 1-2 soft bm a day
GI said goal is to break up instantly when flushing

On any given X-ray even with daily miralax Ds will have
“Moderate stool”

Wishing your lo the best
You will find a sweet spot with miralax
Adding activity helps reduce pain

For my kiddo
Pred /pure een always makes his constipation so much worse
 
My Little Penguin pred also makes it worse?!

I am frankly shocked that GI's don't make that connection between small bowel Crohn's and constipation.

Does TI Crohn's count as small bowel Crohn's?

Both kids had no signs of Crohn's in the small bowel on MRE, but both have it top right side colon and TI into where the scope reaches.

Your advice is gold. Thanks again.
 
We also have constipation with Crohn's (also diarrhea now but in the beginning it was just constipation). My daughter's scopes are like yours Pilgrim - through the colon, but worst in the TI and cecum.

We also started Miralax when she was diagnosed and was not have 1 BM a day. That was also actually the time she had the most belly pain and now that I think of it, that was the time we were managing (or attempting to manage) her constipation.

It is really quite amazing about GIs who do not consider constipation part of Crohn's. Our GI says it CAN be part of Crohn's, whatever that means.

But anyway, we did was MLP did. In the beginning, when the x-ray showed she was very backed up, we did a clean out. Since she was older, we have used enemas a few times but no one mentioned bowel training - it was just to clean her out when the laxative did not work. But she absolutely HATED them.

So other thing we used when Miralax was not working was milk of magnesia (still use it). We give one dose before bed and by the morning she has a BM.

She is on a daily dose of Miralax - she is on one capful (17 g). We used to use a kitchen scale but she is in college now and says that is too much work and unnecessary :lol:.

When she starts trending towards diarrhea, she reduces it.

If she has REALLY bad diarrhea, we stop it but honestly, whenever we stop it, she ends up constipated a few days later and miserable.

She also has Gastroparesis and poor motility everywhere.

We also go for soft "pudding-like" BMs. Sometimes they are formed, sometimes not completely formed. She also has fissures from Crohn's, so anything harder really hurts.

Make sure he drinks a LOT of water with Miralax.
 
Wanted to add - for a LONG time (years) she could not tolerate fiber. It did not help, caused more belly pain.

Now that her Gastroparesis is better, she can have some fiber, but not a lot.
 
Yep TI /ceacum is where Ds has disease as well as some of the sigmoid colon /rectum .
He did have duodenum inflammation for years prior to developing gastroparesis


What we have found is unless you have what the GI community believes is classic crohns(bloody diarrhea woth ilcers strictures etc...)
They will not include the other kids in their Crohns studies since it may “skew “ they resukts they know they want to have

Hence the perpetuation of what Crohns should look and behave like


Just a word of warning

Ds was dx at 7 due to biopsy showing noncaseating granulomas/acute and chronic inflammation etc...
Next scope 8 months later showed the same

Then he went on remicade due to severe EIM’s
All scopes after that were so clean visually and microscopically
They literally changed his dx to possible Crohns

Because the meds worked too well
I kid you not

It’s inky because he switched to Stelara and they actually caught the inflammation in biopsy again as it was healing in his TI that suddenly
His dx was changed back to officially having Crohns

When you have a kiddo who doesn’t fit the literature (because the literature refuses to include those kids in the studies )
It makes it difficult at best
 
My daughter is not the "typical" Crohn's picture either - but luckily, she has been included in two studies.

She used to have bad constipation but now does have diarrhea with flares. She very rarely has bleeding. She also has abdominal pain but generally it is not too bad. Sometimes has mouth sores. But she is not and was never really a "typical" Crohn's kid (now young adult).

When she was scoped, we were sure we were ruling out Crohn's for good.

She also had inflammation and ulcers in her rectum at diagnosis which they said was seen more in UC and less in Crohn's.

We have (thankfully) not had the experience MLP has.

M's scopes did becomes almost completely clean on Remicade (mild microscopic inflammation of her TI, but ALL the ulcers and visible inflammation in her colon was gone) but they just said she was in remission. No one ever mentioned taking away her diagnosis.

When she flared again, a couple years later, she had ulcers and mild inflammation (in her TI and cecum).

But we go to one of the biggest pediatric IBD centers in the US (in the top 2), so they have seen a LOT of different manifestations of Crohn's, so maybe that is why. Or maybe we were just lucky.

I will say that we have had some times when they discount her symptoms because it is constipation and not diarrhea. Especially since her FC is generally low. But over the years, her GI has learned to look at her trend and not the numbers.

But we have heard IBS many times and officially, she is also diagnosed with IBS. I do believe she has it, I just think sometimes they are a little too quick to say her symptoms are IBS vs. IBD, though recently that has not happened, so perhaps they are learning that Crohn's kids do not fit in neat little boxes.

I am just glad she is included in studies (though one is an 18+ study done by CCFA) because she isn't exactly the normal picture of Crohn's.
 
In Ds case it was because he completed healed no visible or microscopic inflammation nothing nada
But still had multiple severe extra intestinal inflammation
The EIM required multiple biolgics at once

The docs felt he had some significant going on autoimmune related but stayed woth even just one EIM they would expect severe Crohn’s disease
And Ds had mild disease if that

So they spent years looking for something else (not ibs)
Some other autoimmune disorder to explain Ds better
 
I am so glad you found a possible reason for his pain and have a plan.

I have two kids with constipation issues. One with a solid Crohn's dx and the other not.

All of the GI's T has seen absolutely accept that constipation is a sign of small bowel Crohn's. Ironically, they take T's constipation more serious than O's diarrhea!

The thing is that while all our kids have Crohn's they could also have an overlay of IBS, regular old constipation, motility disorders etc. I recently read a paper that said that up to 86% of IBD patients also suffer from another gastro disorder!

It makes it extremely hard for us all to flesh out what is causing their issues. Thus the constant blood and fecal monitoring. If those are normal then we assume it is the overlay disorder. If treating overlay disorder doesn't fix things we move to scopes.

T has "mild" disease that presented only with abdominal pain, constipation and slowed growth/weight gain. Treated for a year and no progress. For some reason her mild disease required biologics.

We have moved and there has been A LOT of adjusting for her. A few months ago she started with abdominal pain etc. I mentioned it to GI but we all decided it was stress. Worked on that angle. Couple of months later FCP came back at 250. So now we know it was her Crohn's. Am I mad that she has been uncomfortable for months? No. Medicine is an art just as much as it is a science. We had to make sure before increasing her dose and the medicine load on her body.

It is just all a lot of trial and error. You will get there! In the meanwhile absolutely treat the constipation and when that resolves you can figure a way forward.

Hooray on the prednisone taper! :dance:
 
It is so odd. It seems like a lot of us have one with diarrhea and one with constipation!
My older one is also your typical diarrhea Crohn’s and my younger one severe constipation all the time.
I am so curious if this is a genetics thing.
 
So we treated the constipation two weeks ago with three caps peg per day for three days. Worked well.
Maintenance is one cap per day, worked well until this week. Volume and frequency is decreasing. Pain is increasing.
Luckily, we have a phone consultation with the GI today.
The good news is that I had been having trouble getting fcal through GI and have ironically been able to order it through GP - we now have a standing requisition for fcal every three months for C. I plan to get one for H too, if I can. It is a huge relief. I am looking forward to finding out how much of his pain is functional vs. inflammation.
 
Great news! I have read two recent papers that suggest every 1-3 month monitoring of fecal cal, even in remission, to monitor and react to disease activity.

I really hope the constipation and pain is functional and that the IBD treatment is working...but it is still early.
 
crohnsinct said:
Great news! I have read two recent papers that suggest every 1-3 month monitoring of fecal cal, even in remission, to monitor and react to disease activity.

I really hope the constipation and pain is functional and that the IBD treatment is working...but it is still early.
Click to expand...

Did you post those? I think I remember seeing one.
 
Has he tapered pred ?when
Maintenance drug due?
Not enough water ?
We use water bottles with time marks on when to finish by on it
Feeling better so ate more veggies ?
 
my little penguin said:
Has he tapered pred ?when
Maintenance drug due?
Not enough water ?
We use water bottles with time marks on when to finish by on it
Feeling better so ate more veggies ?
Click to expand...

We're tapering now. He's at 30 mg this week. Still a pretty high dose.
It could be the 25mg injection of mtx. I am going to raise his folic acid to 2mg per day.
He has 5 cups diluted juice in the morning that I measure out. After that I quit counting but he has a juice box at school plus water, fluids at home after school and with supper. We definitely hit the 7-8 cup mark each day (that was recommended).
We always eat a lot of veggies, plus with the pred he's eating more than he needs so I guess that is possible....
 
Just got off of the phone with GI. He said he'd be surprised if the fcal was very high because scopes showed very mild/early disease primarily in TI with only 2 lesions in the colon. He said clearly Crohn's on biopsy but very early. I am going ahead with fcal anyway - doesn't hurt and our family has been surprised before.
He figures the pain is constipation related and we should repeat PEG cleanout. If that doesn't work he'll prescribe pico-salax (mag citrate) cleanout.
That's the plan....
 
Also look at the veggies
As a family we love veggies
Ds over the years has slowly developed issues with them due to Crohns
Raw veggies are out
Steamed veggies are out
Well cooked veggies -squashes tomatoes carrots are ok
Cabbage Brussels sprout broccoli etc(gas hard to digest veggies ) are a big no
These cause cramps
 
My kiddo is the same. Ate lots of veggies until the year before she was diagnosed with Crohn's (I assume that is when she started developing it). Then she just stopped. Said her belly hurt. Would only eat certain vegetables. I though she was just being picky...

We also only do very well cooked veggies. Or soup - soup is a favorite. My daughter doesn't drink smoothies, but those also are a good option for some kids.

Six years after she stopped eating veggies, she is beginning to try different things and is figuring out what works and what doesn't. For her it's been a slow process complicated by Gastroparesis. But she is so happy she can eat them again.

Remember after a child has been inflamed a long time, it will take the nerves a while to calm down. So even if the inflammation is gone, it might take longer for the pain to go away.

If it doesn't go away, then you are looking at some kind of pain syndrome, and you have to treat it accordingly.

This is, of course, assuming it isn't just constipation. Hopefully it is and the clean out will work wonders!
 
There is definitely a theme here with the veggies.
I am wary of restricting raw veggies and fruits because I am scared of the constipation.
 
I think this may not be the case because I think you guys ate pretty healthy to begin with but I will just put it out there...many people discover a constipation issue and then increase fiber greatly BUT too quick of an increase will actually work against the body and cause constipation rather than relieve it.

I know you said he is drinking but wanted to put it out there that when increasing fiber you have to increase the water. This does not count juice as sugary juice drinks can work against your constipation relieving attempts, although I also don't think this is the problem. Anyway, as a guide he should be getting half's body weight in ounces. Sounds like maybe he is getting that eh?

Exercise will help move he bowels. A quick run around the neighborhood...oops wait I forgot where you live there is probably snow...snow shoeing anyone? Swimming is also great for constipation.

As for the vegetables, I order for them to work for constipation they do not have to be raw. The good fiber that helps does not go away when cooked and cooked veggies are sometimes easier for Crohn's sufferers in a flare. Since he is so newly diagnosed I would try cooked.

Other foods good for constipation, beans, oatmeal, ground fax seeds sprinkled in things. Ohhhh there was a great recipe for some constipation relieving muffins on here years ago...I will see if I could find it. Pumpkin and squash are both great so if you have any recipes using those go for it.

If the diet, exercise, water etc have been good then I would think about investigating functional issues for the constipation. I don't know a lot about gastroparesis but could that cause it? Are there other things that could cause it?

I totally agree with you n the fcp. When H is feeling fine, hers can go over 1000. I would definitely get that fcp. It will be good to have as a baseline so you can monitor treatment.

Good luck. Poor kid. Constipation pain stinks and makes you feel miserable.
 
People with Gastroparesis do often have constipation because often they just have poor motility everywhere. Remind me, is the pain after meals? He hasn't had a gastric emptying test, right?

Constipation can really be awful. My daughter had bad constipation when she was first diagnosed. But after 3-4 Remicade infusions, the constipation was much better and the pain was MUCH, MUCH better.

So hang in there. It may just take time.

In terms of fiber, some kids do great and really need it and for others, it is hard to digest. My daughter was unable to eat even cooked veggies for a while, but that was her Gastroparesis not her Crohn's, I think.

Now she is able to eat small amounts of salad (if she eats too much = pain), oatmeal and certain veggies cooked.

I think it will be trial and error to figure out what works for him. And if his inflammation goes down and pain does not go away, you could ask for a gastric emptying test to rule out Gastroparesis.

As for the water thing - yes, make sure he's drinking lots! My daughter carried around a water bottle all day (even at home) to remind her to drink. Based on how big the bottle is, you can tell him how much he has to drink. It's a good visual reminder.
 
I would also wean him off the juice and get him to drink more water. It is really hard and we are working on that with my younger daughter. She now gets one small cup of juice a day and the rest water.
She hates it and it is a fight but we are working hard on it.
We have also been surprised many times by the fecal calprotectin.
 
We had the fcp come back for C at 116.Lab value is anything above 50 is abnormal. I haven't spoke to GI but would guess that was the kind of number he would expect for only two small lesions on the colon and some TI activity.
We are down to 10mg pred. When do the mood swings stop? Pred is the true test of unconditional love.
We did another clean out on the weekend and are maintaining with a cap of peg still, yet he was constipated two days later AGAIN. So I am rereading all of your advice here.
I think I will try the premeasured marked water bottles. We dropped all juice except for about 1 cup a few weeks back.
It is very frustrating.
 
He hasn't had a gastric emptying test but he doesn't have a problem eating. His portions can be larger. But I don't know if that rules out gastroparesis.
 
We use flax as an egg replacer, so that is in all my baking, pumpkin muffins, ground oats as part of the flour in any recipe for muffins, in pancakes.
We're not Hippies, but we eat like one, lol.
I am serving applesauce, to cut down on all the raw apples he ate. Cooked veggies instead of salads. Smoothies frequently. Swapping out the raw, whole veggies.
I'm not sure about his pain levels, because he can't explain to me what level he's at. It must be a little better, because he is going to school.
Anyway, we are taking advice and running with it. Thank you.
 

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