5yo Son Diagnosed 1/20/21

That definitely is trending the wrong direction
Crohns can have seperate liver issues
I would point blank ask the GI why it is continuing to rise
If they are doing an ultrasound of the liver …
Etc

hugs 🤗
 
Thanks...I can ask just that on Thursday.

It has been out of range many times before it was 45 in Jan'24, just to give a broader picture. 53 Feb'22, it always jumping up and down, just first time I've seen 77, wasnt expecting it at all.
 
Was studying past lab history at 2am...I'm really trying to not go back to my obsessive googling,which I have avoided for the past 2 years, but this has it creeping in.

We had 2 rounds of Amoxicillin that ended at the beginning of May to get rid of a month of strep. After that the rise of ALT started (May). Messaged his GI and the nurse said its reassuring that his other ALP and the other enzyme are in a normal range, and that ALT can be sensitive to illness (colds etc) or if the sample is hemolyzed and they will retest and his next infusion. So I have to hold with this for month :cautious:

I ofter refer to this as whack a mole...weight is up, height it 77%ile, labs look good. Time for a random spike of something that wasnt on my radar.
 
I keep saying ALT its AST.

Would it seem odd for the antibiotic to still have an impact over 2.5 months later? And for some reason its AST only.

Having bloodwork done and seeing the possible change in relation to medications is maddening! Sorry for all the questions..just want to bring this up to the GI tomorrow.
 
Hi!

We saw Dr.K, and she was not concerned. Obviously said they will pull new labs next infusion, but with everything else looking good, it wasnt a massive flag to her.

She was really pleased with his weight, height labs, and his remicade level came back at 26. I had asked if they can go from 6 weeks to 4 weeks and back to 6 and she said yes happens all the time..so I was glad to hear that.

Thank You for asking!
 
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That is great
What ever the frequency as long as the meds are doing there job has always been our motto
We don’t get stuck on how many weeks etc…
Glad the meds are working ….
And still keep up with the supplemental nutrition shakes
Those are a good habit and helped tremendously from ages 12-16(puberty and crohns is tough in the body )
At 20 he still drinks them to keep things in balance
 
Yes, we have gotten into a good routine with them over the summer, so I am hopeful we can continue with the morning shake even when school starts in September.
 
My daughter has high liver values - both ALT and AST. Weirdly, they bounce around even though her meds haven't changed. Sometimes they're normal and sometimes they're high (no more than 2x the upper limit for a while though). She is being watched by a hepatologist but so far that's all they're doing. She is on MTX but they haven't wanted to stop it yet. Her ALT is higher than her AST though and her Alk phos is highest (over 300 - that one is quite high). But they are still just doing blood work and watching...
 
I would say if it keeps going up, then ask about further testing and even seeing a hepatologist. We were quite freaked out by her liver values (mostly because her Alk phos was so high, but both AST and ALT were high too) till we saw a hepatologist - he made us feel a LOT better. They're still high, but now we don't panic whenever we get her labs back! Her GI does watch the trend carefully and if they start trending up, that's when we see the hepatologist. He will do more tests on her if necessary in the future.
 
Hi All,

Hope everyone is doing well. We are back to 4 week remicade infusions as his bloodwork has looked great, but calpro jumped to 400 and we started seeing traces of blood in his stool. Iron levels looked good, but his ferratin dropped to 5, so Dr has suggested iron supplement. His weight and height have been on the upswing!

Ferrous Sulfate 325mg provides 65mg of supplemental iron

He took one yesterday, seemed fine last night, but this morning said is stomach was bothering him, and is now on his way home from school. Just wanted to see what everyones experience is with this.

thank you!
 
In battling my Crohn's-related severe anemia I took a lot of those pills. Unfortunately, the steps that increase the absorption of the iron mostly tend to also increase the risk of stomach upset. For example, coated "enteric" pills delay the release of the iron until the pill is well downstream in the gut, reducing the risk of stomach upset. But the delayed release is too late for good iron absorption, since the portion of the gut that absorbs dietary iron is the duodenum - the length of small bowel immediately downstream from the stomach. Hence, talking the coated type of iron pills is pretty much a waste of effort and money, since very little of it gets absorbed.

To achieve maximum iron absorption the strategy should be to take an uncoated type iron pill along with a vitamin C tablet on an empty stomach, and wait for a couple of hours before eating anything to to ensure full absorption.

To achieve minimal stomach upset, unfortunately, the the strategy is just the opposite. For that you should take a coated enteric iron pill on a full stomach. But sadly, you won't get much iron into your system out of this approach.

So what to do? The approach that worked for me was a hybrid of both approaches. First thing in the morning after I got out of bed I took an uncoated iron pill and a vitamin C tablet washed down with clear water. Then as I showered, got dressed and ready for the day I could feel the iron pill nausea slowly rising in my stomach. Getting showered, dressed, and ready for breakfast took me about 40 minutes. At breakfast I immediately ate a cup of Greek yogurt that served to calm the rising stomach upset. Once I had finished breakfast the stomach upset was pretty much over.

So my strategy was to give my gut 30 to 45 minutes of optimal conditions to absorb as much iron as it could in that time and then hit it with some yogurt and other food to calm the upset back down. It seemed to work. My iron blood tests slowly improved and my time suffering with upset stomach was minimized.

If some strategy like this cannot be found that works for you son, you should ask the doctor about getting iron infusions. That's an IV procedure that is more time-consuming, more expensive, and kids don't like needles. But it avoids all the problems of both absorption and stomach upset.
 
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So my kiddo when he was younger had low ferritin
Tried every iron pill imaginable including infant drops
Gi stated it would take at least 6 months to improve ferritin .
Gi also insisted his crohns was ok just needed extra iron
Iron gave him abdominal pain and later blood in his stool /diarrhea
He stopped the iron
Gi was going to watch him instead
Faster forward meds were changed for other reasons
No longer had ferritin issues within a few months of the new med .
All vitamin levels went to normal as well etc…
In my sons experience if the med is working
Ferritin is normal

Remember ferritin is the pantry for extra iron your body only dips into when everything else is low .
If nothing else is going low ferritin builds back up
 
my little penguin said:
So my kiddo when he was younger had low ferritin
Tried every iron pill imaginable including infant drops
Gi stated it would take at least 6 months to improve ferritin .
Gi also insisted his crohns was ok just needed extra iron
Iron gave him abdominal pain and later blood in his stool /diarrhea
He stopped the iron
Gi was going to watch him instead
Faster forward meds were changed for other reasons
No longer had ferritin issues within a few months of the new med .
All vitamin levels went to normal as well etc…
In my sons experience if the med is working
Ferritin is normal

Remember ferritin is the pantry for extra iron your body only dips into when everything else is low .
If nothing else is going low ferritin builds back up
Click to expand...


Yes, I had this exact thought. We started seeing blood, and these were the labs that followed that before we moved back from 5 weeks to 4 weeks.

He took his iron pill Monday night w food, then ended up waking up with a belly ache on Tues morning, vomiting Tues evening 2 times, and a bit this morning. So not sure if it is related or he just has a bug, but as you said I suspect the low ferritin level is due to the blood we were seeing in his stool. So far a week past his last infusion we havent seen blood again. I feel they jumped back to 5 weeks too quick, and his trough level went from 20 to 12.
 
Ferrous sulfate was hard on my kids' stomachs. They were advised to switch to ferrous gluconate, and that one doesn't cause them any issues. I agree with MLP that getting Crohn's in control is really the ultimate answer though.
 
Honestly, when my daughter's Ferritin was that low, oral iron supplements did nothing at all. We tried several over several weeks and they just caused belly pain and nausea and constipation. Her Ferritin fell further from 6 (I think? I can't remember) to 3 and she was given iron infusions over a few weeks. She had one a week. They were very easy and she had no side effects.
I do agree his Crohn's is out of control and he needs to stabilize on Remicade. But iron infusions can really make a HUGE difference to quality of life, so I would ask about them. My daughter has had them several times - sometimes she just needs on and sometimes she needs a few in a row.
 
Hi everyone,

He was still not keeping anything down yesterday, so we headed to the ER.

labs looked ok, xray showed large stool burden, iv fluids, zofran and an enema. Started feeling better after the fluids and zofran. Enema didn’t get poo out, but they let us go home after 6 hours there. Had an apple juice and popsicle, kept it down. Got home we took naps, had some applesauce and he got sick again. Talked to the GI on call, she said to give him zofran see how he does overnight and talk to the doc in the morning.

Have had multiple parents agree this may be related to the iron supplement he took. No fever, inflammatory markers all normal. I suspect we will end up back at CHOP tomorrow, but this has been going on since Tuesday. Hoping some of that stool burden can get moving. Not sure what else to do.
 
Did they give him miralax daily ?
Or magcitrate ?
For what’s its worth
Zofran is great for nausea but ….
In my kiddo
It causes constipation and the more he takes it the worse the constipation even with miralax daily
 
Just the enema, no Miralax yet. We figured that was gonna do the trick, but so far it hasn’t, and he can’t keep anything down.

We are heading to CHOP this morning.
 
Re did labs, wbc is around 12, neutrophils 10k. Sed rate is normal everything else pretty normal.

Just got another xray, and waiting to get ultrasound. Still no poo relief.
 
They put my kiddo inpatient for a week due to severe abdominal pain from poo
Not once did they give him miralax
Just colace
After they finally discharged him
You bet I gave him
Miralax with Gi permission
Took a few days but things got back to normal
 
my little penguin said:
They put my kiddo inpatient for a week due to severe abdominal pain from poo
Not once did they give him miralax
Just colace
After they finally discharged him
You bet I gave him
Miralax with Gi permission
Took a few days but things got back to normal
Click to expand...

Was he getting sick or able to keep food down?
 
He started with bad diarrhea
Put him inpatient
10 plus times a day any time he ate so they pulled all miralax (he had been on it daily for years )
Pulled all food
Placed him on neocate jr only
Diarrhea stopped
Fast forward a week and severe constipation (going once a tiny bit every 6 days )
Back inpatient
And just colace nothing more
But no vomiting
So after a week they sent him home

So yes he was in pain
But he could drink the elemental shakes
Which btw are very constipating since its amino acid based (very little waste by product )

No one would admit the severe constipation was causing the pain
They wanted him to see a pain clinic
Physical therapy etc…
I added miralax back after convincing the Gi
And suddenly after a few days of going
He was a new kid
No pain
No constipation
 
Ultrasound looked good they told us, no bowel wall thickening or abcess. Finally in a room. They are going to give him fluids overnight. He got sick again in the ultrasound room, which brought me to tears.

I said how long can he go without food, they want to see how he does overnight with the fluids as they said he is still dehydrated.
 
Nothing for constipation yet. He hasn’t been able to keep anything down so he is on fluids overnight. I will ask them.
 
Woke up feeling and looking better, took a tub, but kinda started feeling lousy again as the day wore on. Still hasn’t been able to keep anything down. Labs this morning looked good. Been on iv fluids and iv zofran. Doc said he doesn’t have a large amount of stool on his X-ray.

Anyone else have a bout like this? No fever thankfully. Belly pain comes and goes around his belly button area.
 
When you say anything down ….
Is that liquids , clears , or bland solids ?
Pedialyte ?
Ensure clear (they have apple flavor I think ) ?
Sometimes the stomach duodenum can be inflamed and make things move slowly through
Making vomiting more likely (gastroparesis)
When first diagnosed my kiddo vomited on and off but not like your kiddo

If he isn’t full of stool where did that go from the X-ray
Did they mid read it
Weekends inpatient never accomplished much
The regulars aren’t back till Monday
Just the “b” team on weekends

If he can keep clears down
I would ask for ensure clear
Gets some nutrients and may calm his stomach
 
Sips of water is about all he can tolerate right now. Ensure, there is no way.

They did an enema on Thurs morning and a bit came out. 2nd xray they said it was less stool, but nothing close to full. Original xray said moderate stool burden, then GI said it looked like more than moderate. He poo’d Monday and Tues and hadn’t eaten much since Tues so can’t be much in there.

They said bowel ultrasound looked normal, so I am at a loss. Labs, inflammatory makers normal. Feeling completely helpless. He’s asleep, but it feels like we are just stuck.

They keep saying GI bug, gotta wait it out. Guess we will see tomorrow. He’s basically gotten sick 2x a day since Tues. it’s not like constant, but it seems to coincide with drinking. Hes obviously peeing with the IV. I don’t know what to do or suggest.
 
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Plain water isn’t recommended on an upset /vomiting stomach
Sugar water (koolaid ,flat pop etc..)
I get GI bug but really since Tuesday ….
Are his inflammatory markers normal when inflamed?
My kiddo can do that .
How is his other blood work ?
 
That’s what I said! They said they’ve seen it last for up to a week. Ok, I’ll try some of those.
He tried some Gatorade, tea etc too.

Other labs look normal. WBC and neutrophils was up a bit yesterday but normalized today after fluids.
 
I forgot many hospitals have slushies for kids who tend to vomit in the pacu
Chop may have them as well
If not flat ginger ale
 
Last thing
If he is flaring from crohns
Then odds are small minor things like GI bugs can take long to get over since your system is worn out from fights crohns (no reserves )
That said …
Never had to be inpatient for a GI bug for ds the past 14 years
 
I feel like iron may have played a part or piled on possibly?
He had Halloween and flag football last weekend so the germs were flying. I dunno, this seems crazy to me.
 
Have you spoken to your child Gi ?
Are you inpatient on the Gi floor?
Or just pediatric general …
Have you talked to the attending and fellow ?
Residents imo are not very helpful for complicated kids
Also try popsicles
The frozen sugar water can help
 
Haven’t spoken to his GI yet, you know it’s the weekend. God forbid you see any of the regulars. Messages them in the portal angry that no one came to see us after 7 hours in the ER. There’s a ped doc with us today, spoke to her and voiced my displeasure in addition to what is the game plan?

I’ve grilled everyone else multiple times. Tomorrow I am going to be amped up, I can already feel it. We are on the GI floor. My hair stood on end literally walking in here since we haven’t been in almost 4 yrs.

Ok we wil give popsicles a try tomorrow
 
Iron can definitely cause nausea and constipation. But I wouldn't expect 1 pill to wreak havoc for a week, unless he's still really constipated. It sounds like either a GI bug, or maybe upper GI Crohn's inflammation. So glad you're on the GI floor. Believe me, it makes a difference - we once ended up on the neurology floor because everything was full and the nurses had no idea what to do, particularly with my daughter's NJ tube.

My daughter has been on fluids a good 8-9 days when she had an ileus - no nutrition at all. Yes, she lost weight. But she was too sick to even think about eating. She also had pancreatitis - has anyone checked your son for that? Does he have severe stomach pain? Most kids vomit constantly with it, but she had a G tube, so instead of vomiting she was draining like a liter of bile from her G tube. Couldn't tolerate anything at all by mouth or through her J tube at first.

Has he tried Peptamen Jr.? That what my daughter's GI suggested for her when her disease was uncontrolled and she could not eat. That or Neocate.

Another thing that has also been a HUGE help when my daughter's severe gastroparesis has flared up - saltines.
 
This morning was better. Tub, had some dry cheerios, handful, a few small sips of ensure clear, not much, but was more active. Sat on the toilet 2 times to try to poo, but did not.

Asked for some food around 4, had some pretzels and bake chips. That came back up about an hour later. Still on zofran and fluids, they were gonna try to back off then he got sick.

He had an ultrasound which they told me multiple times looked completely normal. Regular GI docs will be back in tomorrow I guess. I don’t think he would keep prediasure down right now. Not sure if went overboard with the food or what, I was pretty convinced we turned a corner.

oh and normal labs this morning again, and they did check for panc.
 
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Not sure why they would go from not keeping sips down yesterday to allowing lots of solids today without proving he could keep down liquids first

The Gi floor will have peptamen jr -vanilla /chocolate flavor in their kitchen
Per ds chocolate tastes best
Plain is horrid
But you can add Hershey ‘s chocolate syrup to any of the flavors and make it taste chocolate

Also doesn’t make sense he is vomiting an hour after eating . And not with all solids or liquids

Sounds like you have a regular hospital ped doc not a Gi running his care inpatient

Hope you get the Gi on board tomorrow
 
That is our fault. He said he was hungry for the first time in 5 days so I said you can try something. After the cheerios went ok this morning and he was up laughing with me on the couch watching food videos I was feeling good enough to think he may be able to have some pretzels.

May have been longer than an hour don’t remember. Haven’t slept much, he has been sleeping well. I’m 6’4” and on a couch with the iv bell ringing every hour.

He wouldn’t drink the peptamen shakes if he was feeling fine, he’s way picky with that stuff.

We did have a ped doc for the weekend.
 
When it became clear to me that Remicade wasn't the right thing for my son, we noticed that toward the end of the infusion cycle he would get a sore throat and feel some nausea. A couple of cycles later when he finally stopped Remicade, he developed a fever and could barely keep anything down for a week or two. I believe this was an immune reconstitution syndrome--a reaction that happens as the immune system fights to recover from its suppression by Remicade.

We also noticed a very similar but not quite as acute effect when Entyvio was stopped.

So, the situation of having a kid on Remicade where the Remicade isn't working great and then can't eat anything for a while is familiar to me.

Things were ok after that reaction ended, but he had to be on EEN to keep the Crohn’s under control. Eventually he had surgery and started Stelara, and he's been going great ever since.
 
We got home last night. Saw Dr K on Monday, and she prescribed an antibiotic. He hasnt gotten sick since late Sunday night. I have talked to multiple parents that have had similar symptoms and most of them were citing Adenovirus? Have had a few friends text and say their kid was in the ER with vomiting as well, so I dont know. Still waiting on a poo, but I didnt poo for 5 days either, and I lost 6 lbs while we were at CHOP. He's been eating and drinking without an issue and no zofran since yesterday early morning.

I appreciate all the feedback and concern!
 
Tips for staying inpatient
Order a guest tray when your child’s tray is ordered .
When you pack your go bag
Bring plenty of shelf stable foods (cereal ,bagels etc)
Get “refrigerator bricks “
Thick solid rectangular frozen sponge like things
Keep theses frozen
Added to an igloo freezer bag and food like cheese /lunch meat etc… stay cold for 48 hours or more
Bring earplugs /eye mask and switch off with another care giver if possible
One stayed at night /one during the day
And then switch for your sanity
Relatives can be designated caregivers by you for hospital stays
Take him for walks off the floor at least once a day
Not sure of chop
But most have libraries /outside gardens which help you and him to sleep better

Glad your home
Assume he was put on flagyl which makes everything taste like metal including water so …
If that was the drug …..
Just realize he is telling the truth if he says it tastes bad

He didn’t eat much at chop so it may take a few days for the solids from today to make it through his system .
Hugs 🤗
 
Thanks MLP, they actually put him on erythromycin, and I tasted the flagyl when he had to take it a few years ago. It is absoutely horrible!

Doing good, still waiting on that poo, but eating and drinking without any issues.
 
Erythromycin is used for delayed gastric emptying .
My kiddo was on it for years to speed up the stomach emptying .
Sometimes the gut slows down due to inflammation this results in vomiting / nausea
Hope he feels better
 
Tips for staying inpatient
Order a guest tray when your child’s tray is ordered .
When you pack your go bag
Bring plenty of shelf stable foods (cereal ,bagels etc)
Get “refrigerator bricks “
Thick solid rectangular frozen sponge like things
Keep theses frozen
Added to an igloo freezer bag and food like cheese /lunch meat etc… stay cold for 48 hours or more
Bring earplugs /eye mask and switch off with another care giver if possible
One stayed at night /one during the day
And then switch for your sanity
Relatives can be designated caregivers by you for hospital stays
Take him for walks off the floor at least once a day
Not sure of chop
But most have libraries /outside gardens which help you and him to sleep better
Click to expand...

Most things MLP said are right about CHOP - I think - my kiddo was last hospitalized there a while ago! My kiddo also spent a fair amount of time inpatient. There are often activities like crafts organized by Child Life but if your son is too miserable to leave the room, then they can bring games/crafts to hime. I can't remember if we had our own fridge or a communal one (I'm now confused b/w CHOP and Boston Children's), but I'm pretty sure it was communal and that you could only keep items a couple days - after that, they would be thrown out. So we definitely did not stock up on food for us.

I stayed with my daughter at night but either her older sister (who was in college) or Dad gave me time off in the day. My daughter was a teen so she had no issue being left while she was eating so I could go get some food, but I know it's harder with little kids. We did laps around the floor and when she was allowed to and we explored the hospital when it was allowed (not during COVID obviously!!). There was a roof garden - I don't if it's still there because I know there is construction, but you can ask. There also definitely used to be a library that had a lot of movies you borrow,

I agree with the eye mask, but I couldn't use ear plugs because then I did not hear my daughter when she was trying to wake me at night because she felt sick.

Visitors are the BEST medicine!

I hope he gets better with the antibiotic but to be very honest, this sound like a flare to me.
 
Hi All,

He's been good since we've been home. No belly pain, normal poo's and appetite. The new thing is he started saying his calves and his thigh muscles felt sore. He had flag football practive yesterday, and I help coach and this came up, so I am trying not panic about it. He has a doc appt with his GP after school. No other symptoms going on right now, sleeping fine, he kept referencing his calf last night. I dont know if its just muscle soreness from being active after being pretty immoble for a week+ with no food. Iron related? He's got an infusion next Weds, so we will get labs again, but as I said they all looked good as of 2 weeks ago.
 
I suspect the sore legs are more exercise related rather than Crohn's related. That should clear up once he gets back in shape.
 
So could be exercise or a few other things …
Make sure he is stretching his calf’s
Warm bath /shower or heating pad may help regardless

Look at the skin make sure it looks normal .

Aslo could be growing pains .
If it persists more than a few weeks /month
I will pm you the name of a good rheumatologist at chop
Some times arthralgia (muscle pain) can come with crohns flares then disappear when inflammation goes away
Other times joint pain joins the party .
 

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