5yo Son Diagnosed 1/20/21

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That's absolutely wonderful!! He gets to enjoy being a kid and you get to enjoy just being a dad.
 
AMAZING! Normal biopsies and all! This is the stuff of legends! Congrats and let the good times roll! Your little guy is a rock star!
 
Hi All,

Question about infliximab trough levels.

Last check in May, which was a 5 week infusion spam, his trough level was 28.7. We are now at 6 weeks.

Just wondering if that level seems incredibly high?

as always..thanks!
 
Yes. That is a high level so moving out to 6 weeks is what most docs would do.
Keep in mind that Studies of infliximab show that risks do not increase with dose escalation so it is not that your son was at an unsafe level as much as at a certain point you are just wasting medicine, money and time.
 
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BTW - I would take this as very encouraging news that your son has healed and there isn’t as much inflammation eating up the drug. Remember that when terribly inflammed the body sops up the drug and you end up literally pooping the drug out so this is why they have to push dose levels higher and higher just to get to therapeutic range. So now your son is healed and holding on to the drug better. Good news all around!
 
crohnsinct said:
Yes. That is a high level so moving out to 6 weeks is what most docs would do.
Keep in mind that Studies of infliximab show that risks do not increase with dose escalation so it is not that your son was at an unsafe level as much as at a certain point you are just wasting medicine, money and time.
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Ya, I know they don't like to make quick jumps in the span of weeks for infusions. Maybe we can even get pushed to 7 or 8. Just in my readings of therapeutic levels, they seemed to be more in the 7-10 trough range. Just feels like we have some wiggle room after the scopes.

I hope you guys are doing well.
 
7-10is actually very low trough levels for a kid
Take it one step at a time 6 weeks is a good start
See how things go for a few months etc
Then go from there
Remember sometimes spacing goes out
But then later has to come back in
The important thing is his scopes looked good and he is healing - living normal
 
Hi my son's trough levels were at 28 at one point so the GI pushed the remicade dosage/frequency from 10mg/4 weeks to 5mg/4 weeks. Six months later, trough levels were at 20, so the GI pushed it further to 5 mg/8 weeks (which I thought was too much of a leap) - in less than 3 months, my son was exhibiting symptoms - his next levels test (6 months later) was down to 1! He is back at 5mg/4 weeks. It is better to take your time with the decreasing of dosage - one week at a time or two. I think my son's doctor went a little too far from changing it from every 4 weeks to 8 weeks. One step at a time - small steps are best.
 
If 28 is too high and 10 is low, what is considered optimal with Remicade? Just curious because my kiddo was just moved to infusions every 4 weeks at 10 mg/kg of Remicade by her rheumatologist (and rheumatologists tend not to look at levels - they do it based on symptoms). We do have a script from her GI to check levels next time, but I was wondering what optimal is.

So very glad your son is doing so well @Jbungie. That is the best news!
 
I think age plays a big factor in levels
Adults (18+) should be fine at 10
But little kids tend to burn through meds at a faster rate
Recent shows trough levels are clear as mud when it comes to kids

young children, the clearance of infliximab has been estimated to be more rapid and to achieve target levels of the drug, higher doses around 10 mg/kg and shortening of the interval to 4–5 weeks may be needed (41). A recent study summarized data from 215 patients with PIBD treated with infliximab and with trough level measurements during induction and maintenance. Regarding patients younger than 10 years of age, two thirds of the patients had trough levels below the target level at the start of the maintenance therapy. After one year of therapy, the dose requirements and risk to develop drug antibodies were higher in the group of young patients compared to the older patient group (41). The therapeutic outcome in the young patients, however, was not different from the older patients (24, 41). However, it is not just weight or age of the patients that have an impact on the trough levels and the outcome of the therapy. The level of inflammation as reflected in the levels of albumin and inflammatory markers is a key player in drug pharmacokinetics (42). Therefore, in patients with high inflammatory load, higher dosing of infliximab is needed to reach target levels (3, 5). Disappointingly, a recent report stated that although trough levels during induction therapy with infliximab increased and antibody formation decreased, the proportion of pediatric patients maintaining their therapeutic response during the first year did not increase (20). It is not clear why some patients with trough levels considered as adequate, lose their therapeutic response. As this may occur after several months of maintenance therapy, it has been suggested that in these late non-responders the inflammatory pathway is altered and becomes resistant to TNFα blockade (43, 44). Indeed, the initial response to infliximab therapy during induction is predictive for the long-term outcome of the therapy both in children and in adults with IBD. Patients with low levels of fecal calprotectin at the end of induction are more likely to have a favorable long-term outcome compared to patients with elevated levels of fecal calprotectin reflecting ongoing inflammation after induction (7, 45).
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https://www.frontiersin.org/articles/10.3389/fped.2020.623689/full
 
Results: Twenty-four of thirty-four subjects (71%) achieved clinical remission at week 8. The median infliximab concentrations were 33.0 μg/mL (interquartile range: 26.5–52.1 μg/mL) pre-dose #2 and 22.5 μg/mL (interquartile range:15.9–32.3 μg/mL) pre-dose #3. Trough pre-dose #2 infliximab concentration yielded area under receiver operator characteristic curve 0.7, 95% CI: 0.5–0.9 in predicting week 8 clinical remission; a cut-off of 33.0 μg/mL yielded 62.5% sensitivity, 66.7% specificity. Trough pre-dose #3 infliximab concentrations were lower for subjects <10 years compared to ≥ 10 years [median 15.9 μg/mL, interquartile range (IQR) 8.5–21.8 μg/mL vs. 27.7 μg/mL, IQR 17.2–46.7 μg/mL, p = 0.01] and correlated with baseline weight (Spearman's rank correlation coefficient 0.45, p = 0.01). The median half-life following first IFX dose was 6.04 days (IQR 5.3–7.9 days).

Conclusions: Infliximab concentrations ≥33 μg/mL prior to the second dose were associated with week 8 clinical remission. As young age and low body weight impact infliximab concentration, prospective studies with proactive adjustment in pediatric patients with ulcerative colitis should be carried out. Clinicians caring for children with UC should diligently adjust and monitor infliximab to optimize response.
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https://www.frontiersin.org/articles/10.3389/fped.2021.668978/full
 
The ideal trough level is the one that works.

Each person is different so there is not one hard and fast rule. All Gi's have their go to starting point based on their experience. In GENERAL 5 is considered therapeutic range but most GI's will shoot for 10 for active disease. If that doesn't control it they will go up and up. Then once symptoms are under control, scopes look good and you have about 3 normal cal pro's in a row they will experiment with very slowly decreasing.

There is no upper range necessarily but if 15mg/kg Q4 is not doing the trick, most GI's will then look for another drug.
 
I think age plays a big factor in levels
Adults (18+) should be fine at 10
But little kids tend to burn through meds at a faster rate
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That was my guess - age plays a factor. M's pediatric rheumatologist was willing to go to 20 mg/kg for Remicade - she spent quite a while on that dose with no adverse effects. I think her adult rheumatologist and adult GI would be horrified at that dose! Actually, the first thing her adult rheumatologist said when M said she'd been on 20 mg per kg was that she had been on the "kiddie dose" - M was quite offended because she was in her late teens when she was on that dose (and of course when they're 18-19, they think they're grown up ;)).
 
Wanted to expand on my comment about 15mg/kg not doing it…..I meant that if you are on a dose as high as 15mg/kg or even 20mg/kg and every 4weeks and your trough levels are 20+ and you are still experiencing symptoms, then they will consider you a non responder. But if experiencing symptoms and trough is low they might push using more or add methotrexate or imuran (I know we all love to hate the thiopurines but they have a great success rate).
 
Incidentally - T just had her levels checked and here is what the lab says:

Comments:
- The optimal drug concentration depends upon
patient-specific factors including the disease and
desired therapeutic endpoint.
- Maintenance trough concentrations >=5 may be
associated with higher remission rates.(1)
- In severe CD, higher trough levels (>10) may
be necessary to achieve fistula healing.(2)
- In rheumatoid arthritis, EULAR responders had higher
median trough levels (3.6) than non-responders
(0.5).(3)
 
You guys/girls are all awesome! Such great feedback and knowledge from experience.

If anyone wants to follow us on Instagram, hit me with a DM.:)
 
My son is on Remicade for last 3 months. Last Monday he had 4th one with increase of dosage from 5 mg to 10 mg. He is having infusion for every 8 weeks. He is having symptoms of heaviness and uncomfortable feeling in the anal area after the bowel movement. To address these issues they increased the dosage from 5 to 10 mg. I have not seen any improvement in these issues and on top of it he is having new issue of emptying bladder. He constantly having the urge of using rest room particularly before going to bed. This issue started after starting the infusion and it got worse after the last infusion. Took doctor appointment but that is on September 1st. Want to know any one has faced this situation and what should I do to address this new issue.
 
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Hi there, you mentioned that the increase was just last Monday. He may need a little more time for the increase to make a difference. When my son was increased from 5 mg to 10 mg, it did make a difference but it did take a few months for symptoms to completely resolve. Is your son on any other medication?
 
Jo-mom said:
Hi there, you mentioned that the increase was just last Monday. He may need a little more time for the increase to make a difference. When my son was increased from 5 mg to 10 mg, it did make a difference but it did take a few months for symptoms to completely resolve. Is your son on any other medication?
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No...he is not taking anything other than infusion for every 8 weeks.
 
@sairm How old is your son? Jo-mom is right the increase could take awhile to resolve all symptoms. As for the new symptoms, it could just be a run of the mill UTI, did you make that appointment with his pediatrician? You might get faster answers as far as possible UTI at the pediatrician.
 
I would also have his pediatrician see him, just in case it's a UTI. They'll likely do a urinalysis and culture and you'll have results in a couple days.
You can also message his GI - that's what we do between appointments when there are issues, just message through the patient portal. I suspect the GI would also order testing for a UTI though.

He is having symptoms of heaviness and uncomfortable feeling in the anal area after the bowel movement. To address these issues they increased the dosage from 5 to 10 mg. I have not seen any improvement in these issues
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As for his other symptoms, like others have said, it may take a few infusions at the higher dose for those to go away. Sometimes using proctofoam or hydrocortisone suppositories in the interim can really help.
 
crohnsinct said:
@sairm How old is your son? Jo-mom is right the increase could take awhile to resolve all symptoms. As for the new symptoms, it could just be a run of the mill UTI, did you make that appointment with his pediatrician? You might get faster answers as far as possible UTI at the pediatrician.
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He is 12 years old. He is very good chess player. He got diagnosed last year August and was on strict diet since then thinking that he can get away without going for infusions. But he started taking Remicade from May 8th after his symptoms getting worse. Last Monday infusion was his 4th one. We got an appointment with urologist on September 1st.
 
8 week spacing at diagnosis is most likely much too far of a spread. It took us a year and a half to get to 6 weeks.
 
Jbungie said:
8 week spacing at diagnosis is most likely much too far of a spread. It took us a year and a half to get to 6 weeks.
[/QUOTE

Thank you all for valuble information. Got response from my sons GI to check drug level before next infusion(Oct 20th) to see whether it requires to be adjusted. They did MRE in the anal region and it looks almost good except mild inflammation. Doctor was saying he needs to do scope to see what exactly is causing his symptoms. Not sure whether gor for it or wait few more weeks to see whether last week's infusion will do some help. Regarding his bladder issues, went to pediatric urologist yesterday. He said it might be because of overreacting bladder and prescribed some medication to relax it. So fat not seeing much help for medication. Need to call in office to see what is next step. He is having tough time from all these symptoms.
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Clean scopes, clean biopsies, and yet we still have absolute lymphocytes at 4,880, with the high end of the range 3,960. 65.2%, before his infusion today.

This sent me into a depression tonight after our infusion. I google and start reading about risks in those with consistently high lymphocytes, and just get gut punched.

I messaged his doc, and she wasnt overly concerned as it is considered mildly elevated, and is not in a consistent upward trend. Although it is the highest its been since last Aug, when it was 4,730. This was the first time we have had labs done with a 6 week span. I just cant wrap my head around why they are raised if there are zero signs of inflammation.

Weird part is, we had labs drawn in the ER 1 day after his last infusion which coincided with scopes, and his absolute lymphocytes were 1,860, and 20% of the total. Today, 4,880 and 65.2% of the total.

All his other labs are basically normal.

I'm sorry, I am not sure I will ever be able to hold with this stuff. I hate walking in that hospital..absolutely hate it.
 
Ok so first thing first
Yay on the clean scopes /biopsy
That’s a great thing
Second breathe
If the doc isn’t worried you shouldn’t be too much

11 years in
Absolute lymphocytes
Absolute eosinophils
Absolute neutrophils
Absolute monocytes

always bounce around
They add up together so when one is down others go up etc…
Can vary by day

I know I used to fret when things were high or low
Docs never even blinked

once ER visit Ds was having an auto inflammatory flare before we knew he had sweets syndrome (aka acute febrile neutrophilic dermatosis )
Extremely low lymphocytes and very high neutrophils
Only then did Rheumo come down to the ER and make the ER docs rerun the bloodwork stat
To make sure Ds would be able to fight off an infection .
Lymphocytes went up with next blooddraw within an hour from last one
Ds was fine
Granted we didn’t know high neutrophils in his case was sweets
Just thought infection
He now takes meds and things are calm mostly
Occasionally blood work goes wonky even when nothing is wrong.

the lymphocytes ,neutrophils,monocytesetc make up a balance equation
Docs know this
Only when things are really off
Then they will let you know
They are trained to look for worrying trends

Your child is ok
Enjoy the day
The meds are working their magic
Hugs 🤗
 
Oh @Jbungie please try not to worry. I know it’s easy to say but if the GI isn’t concerned then I think it is fine for you to stand down.

Try to remember O’s recent “critical” lab results. The lab was so concerned they called the GI’s office. Her GI was on vacation so GI’s nurse went to covering GI and covering GI didn’t bat an eye. Her GI returns from vacation and doesn’t even mention it except all of a sudden in her chart there is a lab request for a repeat test…when you have a chance.

Yes, I googled the result. There were a bunch of other things off also. They pointed to sepsis which O is prone to and mega colon which she has also come close to. But she didn’t feel sick at all and was bouncing along nicely.

We are just parents and don’t have the know how for how all these pieces fit together. The docs have the education, training and years of experience. Let them do their job so you can do yours and enjoy your boy and all of the games you guys play together.
 
Lol. Here is another story…O has low blood pressure. Like freakishly low. Resting heart rate in the 50’s and sometimes 40’s also. Every time the med tech or nurse enters it in the computer an alarm goes off and it’s marked in red. They almost always clear the alarm and just over ride it. One time in urgent care same thing happened. Doc said I can’t let you leave with these numbers and O said,”oh that happens all the time it’s fine”. Lol doc said,”well not on my watch”. Bag of fluids and it came up and she left.
 
Apologies for not reading the entire thread.

The normal range for lymphocytes varies with age. 4880 seems completely normal.
The upper limit of normal is higher in children, especially younger children. I wonder where the labs reference range is from snd if it’s age

Med News Today says “The normal lymphocyte range in adults is between 1,000 and 4,800 lymphocytes in 1 microliter (µL) of blood. In children, the normal range is between 3,000 and 9,500 lymphocytes in 1 µL of blood.”

Please also see here:
http://a1.mayomedicallaboratories.c...plete-blood-count-normal-pediatric-values.pdf.
And
https://www.healthcare.uiowa.edu/path_handbook/appendix/heme/pediatric_normals.html
 
I agree with the above - my daughter has minor (and sometimes major) abnormalities all the time.

Her labs are watched carefully and she has had liver function tests that have been off for the last couple years. But when they were seriously off, we heard from both her PCP and rheumatologist the day she had the labs done and she was then sent to a hepatologist, who now monitors them. They're still off, but not majorly, so we are waiting and watching.

Over the years, I have learned with my girls not to worry too much unless the doctors are worried, especially if you have other tests confirming the child is in a good place. Your son just had CLEAN scopes and a very low Fecal Calprotectin. So I would just enjoy him right now - he's at a wonderful age and it won't last forever!
 
Thanks All. Had some weird dreams last night, and really spiraling today. I start reading about possible issues or reasons for long term lymphocytosis. My mind immediately goes to all the L words we want to avoid.

His current lymphocyte range is 970-3960/ul and has been consistently elevated for the past year or so. Last lab was the highest at 4,880. That lab last year would have feel in the normal range. When he turned 6, the ranges changed, and I am sure it's going to change again in a few months.

I am so tired of fretting, I have to get better with this. I dont want you all to feel the need to talk me down, I just need a place to vent.
 
xmdmom said:
Apologies for not reading the entire thread.

The normal range for lymphocytes varies with age. 4880 seems completely normal.
The upper limit of normal is higher in children, especially younger children. I wonder where the labs reference range is from snd if it’s age

Med News Today says “The normal lymphocyte range in adults is between 1,000 and 4,800 lymphocytes in 1 microliter (µL) of blood. In children, the normal range is between 3,000 and 9,500 lymphocytes in 1 µL of blood.”

Please also see here:
http://a1.mayomedicallaboratories.c...plete-blood-count-normal-pediatric-values.pdf.
And
https://www.healthcare.uiowa.edu/path_handbook/appendix/heme/pediatric_normals.html
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Ya, I've read some of that as well, and those ranges look considerably higher. I would just expect his docs to bring that up ya know? They said is number is mildly elevated, but its been that way for a year, and looked normal when he had bloodwork done 1 day post infusion. I was like YES! Its normal, then got 6 weeks labs done and it was as high as its been in the past year. It just doesnt feel like 65% of his WBC should be lymphocytes while he is in histological remission.
 
Hi All,

We are doing well. Infusions every 6 weeks, and symptom free. The one thing that has popped up on occasion is a headache in the front of the forehead, periodically. Doesnt wake from sleep or cause nausea, but is kind off and on. We saw a neurologist back in Oct for twitching toes fingers while asleep, and mentioned the headaches, she gave him some visual, strength, balance tests, and wasnt concerned, but by now you guys know me. I'm working on controlling myself, but I get very bummed out when he comes home from school with a headache. My mind goes to dark places very fast.

Just wondering if anyone has experience with this
 
Have you had his eyes checked recently? One of my daughters had headaches like that and she ended up needing glasses.
Also make sure he stays hydrated, because dehydration can cause headaches.
 
Second the eyes checked
Often little kids don’t understand/know they are not seeing as they should

mine had headaches /migraines when he was around that age 6 or 7
Neurologist gave meds for migraine
Every once in a while he would get them
But eventually he out grew them just a mysteriously as they started around age 10
 
Yep! Both of my girls have had bouts with headaches. We investigated them and couldn’t find any reason for them. They eventually left but O still gets them due to dehydration. Second the hydration and eye doctor ideas.
 
Hi All,

Hope everyone is doing well. We are excited about the Super Bowl, but have some nasal congestion!

Any issues or experience using children's flonase sensimist? His ped recommended, and is aware of his medication.

As always, thank you! Go Birds!
 
Fly Eagles Fly!

We have used various products for nasal congestion. I forget what they all were but never any issues.
 
Hi All,

We are doing well. Just an experience question. We have had post nasal drip and on and off cough, sometimes it may sound dryer than other, this morning it sounded like post nasal, but this has been going on for about 5 week. Otherwise good, no fevers or anything.

Just wanted to know how long peoples little ones have experienced coughs for. You read and its like anything over a month or so needs to be checked out. He went to his doc about 3 weeks ago, and they said post nasal etc. I get stuck not wanting to be overly cautious. Of course I recognize the meds may extend a normal cold's duration, but this is really our first pass on this.

Thank you, hop everyone is doing well.
 
Given his age and time of year
Could be allergies
Indoor and /or outdoor
Pollens start around feb
Might be worth talking to a pediatric allergist at chop .
Since you ruled out infection by the pcp a few weeks ago
Lots of allergies here and post nasal drip /dry cough started about 4-5 weeks ago for all not just the ibd kiddo
:)
 
So my kiddo is dealing with a sort of similar situation. She had a dry cough at first but then developed congestion and sinus pain and pressure and post nasal drip. She’s had the cough for 3 weeks or so, and the sinus congestion and pressure for about two. Her PCP said if her congestion and sinus symptoms do not clear up in the next few days, then we have to treat her for a sinus infection. She is already on a treatment regimen for allergies, and her PCP says that sinus congestion and pain/pressure that lasts more than two weeks has to be treated like an infection for her, especially since her cough is now productive. She also has to do a chest x-ray but we did travel internationally recently and I think her doc is just being cautious.
 
UGH! The girls and I babysit a 4 year old and that poor kid has been fighting the same for months now. It seems she is always "sick" and her mother keeps bringing her in because day care won't let her in and the pediatrician looks at her thoroughly and says, "yep, post nasal drip, allergies, kid yuck". They say everyone is taking forever to get over this stuff.
 
Hi All,

We are doing well, but of course weird blips when everything looks and seems normal. Poo's completely normal, sleeping well, energetic.

Calpro 29 / C Reac Pro <0.5 / HGB 12.9

My what the hell concerns..

Sodium 133 (138-145)/ Calcium 8.4 (8.8 - 10.7), Albumin 3.2 (3.7-5.6), Alkanin Phos 99 (175-420), Total Protein 5.9

Sodium has always been on the low end, Calcium and Albumin randomly dropped off, as well as Alk Phos, which was hovering in the 120's. Note he was taking liqiud zinc supplement daily and we've kinda fallen off our routine with that over the past few months.

Friggin whack a mole, I hate it. I am sure some will look at this and go no biggie. I always look back to diagnosis numbers and compare, totally freak myself out.

We are going to see The Flash tonight, so super excited, and trying not to let this impact me.


As always..thanks
 
Does he drink shakes ?
We found when Ds drinks 1-3 shakes a day
Pediasure ,kids boost , kids carnation instant breaks fast etc…
The weird wonky numbers stay normal
Talk to Gi
But my kiddo used those 1-3 a day from age 7 on and is now almost 6 ft tall despite having crohns and normal bloodwork
We stopped once or twice abd things went wonky blood wise
 
On and off shakes that we make. I agree he probably needs a supplement like that and it would make a big difference. He's picky, will like something for a month, then be like...ewww. He has interest in making his own shakes, I could supplement with some shake added into what we make. I try not to push too hard, because then I turn him off to it.

GI was surprised at albumin, said will retest in 6 weeks. This happened about a year ago, random big drop off, then next time was normal

I appreciate it very much!
 
I wouldn’t make them
The store bought ones have the added vitamins and minerals that are easier to absorb
Homemade doesn’t do the the same thing unfortunately
If he gets tired of one
I would try a different flavor every week
There are a ton
Especially with pediasure
Carnation has a ton as well
Ask the Gi some even permit slim fast etc the point is the extra nutrients as long as it’s with solid food
As far as the ewww
Shakes in our house were like meds
Not optional
Given they affect his health
Ds could pick other things to have control over
Cookies ,dinners ,etc
But shakes were medicine

I had seen way too many crohns kids who were short and skinny as teens /adults due to malnutrition for way too many years

I know it’s sounds mean
It’s not any different than telling them to take pills or shots

Ds surprised all his specialists by his growth
They did not think it was possible
Especially given all he had going on and how skinny /short he was at 7
They still comment on it

get the shakes in
Cave on other minor parenting issues ;)
Like screen time
 
Ok, I am on it! He wants to be ripped and be able to dunk a basketball, so thats the spin I usually take!

Caved on screen time a LONG time ago :)
 
You can tell him about Ds
Ds and one of his friends both had crohns
5 months different in age
And Ds towers over the other kiddo (who refused shakes by the way for over 10 years )
And what kid doesn’t want to look older /bigger than their friends
 
The low sodium and low albumin levels look like a significant concern to me. I know that whenever my son was doing worse, his sodium and albumin levels were always lower. I also hear that low sodium levels are far more common than high sodium levels in hospitalized patients.

I think that infliximab sometimes merely masks illness without necessarily improving the underlying condition.
 
His sodium has floated between 134-138 for years. His Albumin dropped very low (2.9) for a round of labs about a year ago and was back to normal next round. In addition to her inflammatory makers being perfect. I trust that his doctors would relay any significant concerns, but just wanted to see what everyone else has experienced.

Ya, dont disagree with that, but the alternative is what?
 
@Jbungie
My kiddo was on remicade /humira for years and he had complete mucosal healing
Meaning his intestines were pink and pretty and biopsy slides were completely normal .
So much so the docs were questioning crohns dx
Yes his intestines looked that good
But when he started Stelara at the lower frequency
Scopes then showed mild inflammation creeping back in so dose frequency was increased .

my point is different meds work differently for different kids
And remicade /humira has shown more than just symptom relief for a lot of folks (not all )
In my kids case completely healed gut

he scopes again at the end of the summer after 6 years on Stelara so will see if it’s pink again ;)
 
Always appreciate your experienced opinions @mylittlepenguin! Thank You!

We had the pink colon result, and clean biopsies as well, so just trying to hold that line, grow, and stay sane.

BTW Keaton was great in The Flash, the rest was bleh.
 
I agree, supplementing with shakes should help with his albumin. There's also Boost and Kate Farms, in addition to Pediasure and Carnation instant breakfast. I would rotate flavors and shakes. My daughter also used shakes to help gain weight and because she was malnourished. They really made a big difference. She started out drinking Peptamen Jr. but couldn't drink enough to even maintain her weight, much less gain. Her GI (and we were at CHOP at the time) gave her a choice between drinking and an NG tube. She chose the NG tube and learned to insert it at night and remove it before school - she was very against it at first, but as soon as she got used to it, she declared she was not going back to drinking shakes EVER.

That's an option you could talk to your GI about if he absolutely won't drink shakes. But first I'd try rotating flavors. My daughter preferred shakes cold - you could try that too. Some kids also prefer drinking with a straw.

How is your son's weight and growth?

In terms of Infliximab, it DEFINITELY can cause healing of the gut. My daughter also has had scopes (on Remicade) last summer which confirmed she was in remission - she had a perfectly healed colon and terminal ileum. Recently, insurance denied Remicade arbitrarily in December, and she flared while we were trying to get it re-approved and actually ended up needing IV steroids due to severe diarrhea. Now that she's been back on Remicade for several months, her Fecal Calprotectin has gone back to being <16 and she feels fine!

She has a friend with UC who has been in remission on Remicade for 11 years now - she is in clinical remission, endoscopic remission and histological remission (biopsies are completely normal). It's a very good drug - it doesn't work for everyone, of course, but it does work very well for some.
 
Thanks!

He's in the 73 percentile for height, floats between 23-30 percentile for weight. Gonna catch his weight up to his height.

It took me a bit, but discovered rotating is necessary with all food with a kid!
 
When we were at CHOP, my daughter was told that her weight and height percentiles should be roughly the same. Her height was 10th percentile and her weight was at the 5th percentile…she eventually dropped off the charts for weight and that’s when her GI said she absolutely had to drink the shakes or use an NG tube.

Since you’re using shakes mainly for weight gain, you can also try adding chocolate syrup or strawberry syrup to vanilla. My daughter preferred vanilla with chocolate syrup to the Peptamen Jr chocolate. Her GI allowed that. Her GI wanted semi-elemental shakes because those were easier to absorb but she had active Crohn’s at the time, but considering your son is doing well on the Crohn’s front, you can probably use polymeric shakes like Pediasure, Boost Kids etc.

You can give him an incentive or use a sticker chart or basically anything to get him to drink the shakes daily. Our GI was also emphatic about treating the shakes like medication.

My daughter relied on a feeding tube for 4-5 years. She still uses hers occasionally, mainly when she’s flaring but has been a healthy weight and has had no nutrition issues in years.

Since his weight needs to catch up with his height, another thing that really helped was seeing a dietician and figuring out how many calories she was actually eating and what we could do to make sure she was getting enough nutritious food.
 
Hi All,

Hope everyone is doing well. We've been doing a great job with our daily shakes!

Remicade level question. We seem to be in a trough level dropping cycle. Was 14.7 at 6 weeks in April, 9.8 at 6 weeks in Aug. Obviously they could move us up a week, but what has everyones experience been. When do they decide that a change to a new treatment may need to be made? We have a checkup with our GI in 2 weeks, so obviously we will discuss, but just wanted to get some insight.

Thank You!
 
How's he doing and what is the dose and how often now? My GI likes to see a trough level of 10. My son was at 10 at one point, but then reach 28, and his dose was reduced from 10mg/4 weeks to 5 mg/4 weeks. Next trough level showed 18 - so GI reduced it to 5 mg/8 weeks (which I thought was a little too much of a reduction) - it only took 4 months for him to crash and almost flare as his levels dropped to a near nothing. He's back at 5 mg/4 weeks and his last trough levels were 6 so the GI added mtx to the mix and he's doing well. His next levels will be taken soon. So as you can see, it's been a bit of a ride but this is over the course of 5 years now and overall, he's been doing really well. So, this is our experience. No mention of changes as he seems to respond well to Remicade. As long as your son is doing well, there might just be further adjustments.
 
He is doing well! Symptom free and energetic. I really DO NOT want to go back to mtx, that seemed to cause appetite issues and stress. I know I am jumping the gun. We are currently at 10mg/6 weeks.

Last Calpro in June was 29.

I appreciate the feedback!
 
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Also keep in mind
Kids especially little kids tend to need higher levels since they burn though it so fast (eating growing machines) vs adults
Mtx per my kiddo and dh makes you very nauseous the day of and afterwards at least with pills
Shots made my kiddo sick for 5-6 days after the shot so …
No shots for him
 
Blood lymphocyte levels don't tell you much, the doctor is right not to worry about it. Most lymphocytes are in lymph nodes and tissue. The ones relevant for crohn's disease are either grouped together in peyer's patches and in lymphoid follicles, or scattered in tissue calle the lamina propria. You can't measure these by drawing blood.
 
Hi All!

Been a bit since we've posted. L is doing good. Remicade every 6 weeks has kept us symptom free. Last month was 3 years since diagnosis, which seems insane. He turned 8 in Sept.

He has had a sore throat for about 5 days. Strep and culture was negative 2 times. Aside from the sore throat he doesnt really have any other symptoms. Low grade fever on Sat, but has been good since then. His primary mentioned it could possibly be mono, which was a bit scary to hear. Its that something we should get confirmation on? His only med right now is remicade. Just wondering what everyone's experience was with this. Motrin has kept his sore throat in check, last night he seemed to improve as it didnt wake him up.

As always..thank you!

Oh and of course I have a message into his GI as well :)
 
Motrin is nsaid
Which can be a big No for crohns patients
Check with Gi
Mono test is easy
Every single time my kiddo is sick they test for mono given biologic use
Never an issue but still had to test
 
Thank You MLP!

Yes, I know that the nsaids can cause issues, tylenol was giving no relief. We have requested the script for the mono test. He's seems to be doing much better today.

Did your kiddo ever test positive for mono?

as always..thank you for your insight!
 
Hi All,

We are doing well, aside from a drawn out bout with strep that is being treated with antibiotics. We also need to put on some weight as the height is increasing and his weight is a bit stagnant.

I have a question. Had an infusion last Monday, all his bloodwork including iron levels were in range. His remicade trough level came back at 5.4, when it was tested in Dec'23 it was 13.5, Aug'23 it was 9.8, Apr'23 14.7. Currently we are spaced at 6 weeks. Does anyone have experience with a drop off like that? And could the fact that has had strep impact his level? His Doc suggested possibly moving his next infusion up to 4 weeks, or re testing the level at 6 weeks, and seeing if it was a fluke.

as always, thank you!
 
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Jbungie said:
I have a question. Had an infusion last Monday, all his bloodwork including iron levels were in range. His remicade trough level came back at 5.4, when it was tested in Dec'23 it was 13.5, Aug'23 it was 9.8, Apr'23 14.7. Currently we are spaced at 6 weeks. Does anyone have experience with a drop off like that? And could the fact that has had strep impact his level? His Doc suggested possibly moving his next infusion up to 4 weeks, or re testing the level at 6 weeks, and seeing if it was a fluke.
Click to expand...

A Remicade level of 5.4 is borderline low. It could be an indication that antibodies are forming or it could just be a fluke. Boosting the dose or shortening the time interval to 4 weeks are reasonable first steps to try to overcome any antibodies. Were antibody levels tested?

If not, I would suggest a retest at the next trough to check for a fluke and to check for antibodies. If the drug level is still low and/or if antibodies are present, then increasing the dose or shortening the time interval might be called for.
 
Agree with above
Add in for kids flatline weight tends to mean something may be brewing
Or inflammation/chronic disease requires more calories than he is eating
Is he drinking pediasure or kids boost ?
Our kiddo required 2-3 shakes a day plus meals throughout childhood more during puberty
This allowed him to exceed growth patterns the specialists were all concerned over
None can believe he has had crohns since age seven and grew to close to 6 ft tall (predicted height at age 2)
If he is under 13 any kids version works
Carnation instant breakfast powder ones for kids mixed with milk can help as well
 
I appreciate the feedback!!

Yes, I feel like (and hope) its more related to he's just not getting enough calories. His doc felt the same, considering he had one of his best round of labs he has ever had. Doesnt mean something may not be brewing though, but all his markers have been good, not sure what else to go by.

We had been doing shakes, he gets sick of them, and we try to find something new. We definitely need to be more consistent is sticking with it and treating it as if its part of his treatment. I think he would easily put on weight with 1 shake of 350-400 calories. I told him the alternative is getting a feeding line at night, not to scare him, but just make him aware. I am also showing him calories of each thing he eats and how much more he needs to get that weight up.


Question MLP, at what time during the school year would you do the shakes? He has to be at school by 7:45 am, so the mornings are tough.
 
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One after school and one after dinner or one in the morning before school .
350-400 are this plus shakes
Plus shakes have more calories but are thicker and harder on the system
Kids boost or pediasure comes in plenty of flavors and is only 250 calories
Easier on the stomach
 
How old is he now? It might be worth showing him a video of a kid inserting an NG tube. We were told at CHOP that they've had kids as young as 6 do it by themselves. Some kids that age just choose to keep the NG tube in all the time too.

When my daughter was doing shakes during the school year (before she had an NG tube), she'd have one after school as a snack and one before bed as a snack. That was really all she could manage and that wasn't enough to maintain her weight, much less put any weight on her, so switching to the NG tube made a HUGE difference for us. She could not believe how much better she felt.

I would definitely try all the usual tricks with shakes - switch flavors/brands, put it in a bottle so it's cold, use a straw etc - they can really make a difference.

I agree that you should definitely check Remicade levels again - he may need a higher dose now or more frequent infusions.
 
He'l be 9 in September..which is insane!

We've gotten back into a groove with the shakes over the past week. School mornings are tough, he is up and out of the house by 7:10 am. I was thinking of doing flashcards next to foods with calories so he has a choice. May tie some incentives to it as well!
 
I would stay away from calorie cards
The shakes are easier for his body to absorb at 9.
If he is drinking two a day I would leave it at that
One after school and one before bed after dinner .
Just make it a habit like meds
We called them power shakes or growth shakes
My kiddo knew if he drank them he would grow big and strong.
That was what worked for him at that age .
Thankfully it stuck
Still drinks two a day at 20 since he had delayed growth . He should finish growing in the next year .
You got this
 
Yeah, I agree - you don't want him to fixate on calories. My daughter became very underweight when she was around 16-17 and my husband and I were constantly telling her at dinner to just eat a little more or take another bite or that she wasn't getting enough calories. It got to the point where she hated meal times and food!!!

The NG tube actually freed her in a way - that way we weren't worried about how much she was eating because we could just adjust the amount of formula she could get at night. She said the best part of the tube was that no one was nagging her to eat or drink shakes and vowed she'd never drink and she went back to enjoying food instead of worrying about calories and how much she was eating. She even did tube feeds at college.

Your son is only 9 - I would focus on growing and having more energy to play sports or run around. He doesn't need to worry about calories.

You can also ask to see a dietician at CHOP - we did and she had tricks for adding more calories to foods and snack ideas.
 
Thanks all for the input. It is truly helpful! I agree I dont want him to dread eating, and I kind of pulled back on offering and askingn if he wanted something. It wasnt fun for either of us.
 
So you can keep track of calories on apps like fitness pal (just don’t discuss with him )
Watch if he is eating a small amount and getting full quickly
Or getting full faster on tiny amount if the fat content is higher
Or eating a lot if calories with shakes but still not gaining
Theses are things the Gi will want to know .
Again just by observing but not commenting to him
 
Hi All,

Quick question on remicade trough levels. We went from 13.5ug/ml - 12/23, 5.4ug/ml - 4/24, 6.3ug/ml - 5/24.

Bloodwork and inflammatory markers look fine, going to check calpro, but thinking we should probably bump up from 6 weeks to 5 or 4 week spacing for infusions. His doc is going to submit for approval. Just wanted any experiences.

Has anyone gone from 6 weeks to 4 back to 6?

Thank You!
 
We changed dosing on Stelara
Started at 8 weeks
Moved to 4 weeks
Insurance pushed for 8 weeks so gi reluctantly agreed to 6 weeks
Ds flared and back to 4 weeks
 
@Jbungie - my son's history of Remicade and dosages are as follows:

5 mg/8 weeks
5 mg/4 weeks
10 mg/4 weeks
5 mg/4 weeks
5 mg/8 weeks (this was too drastic a change and he almost flared at this point)
5 mg/4 weeks
5 mg/5 weeks

On remicade for 5 1/2 years. So yes - changes happen often. :)
 
Hi All..Happy Friday!

Just looking for some feedback as I slightly freaked out.

Calpro came back at 309, was 29 last time it was taken, which was last June. Remicade level came is 6.3, so we are now going to space out at 4 weeks.

Questions. Is a 309 calpto considered a flare? He doesnt have symptoms otherwise, but I know calpro is one of the best indicators of inflammation.

Do you think moving from 6 to weeks will improve his drug level? I guess they would probaby wait a month or so to retest calpro?

This is our first major blip since the insanity of the original diagnosis...so I have a bit of I dont want to go back vibes going on.. :(

Thank You All!
 
Flares are typically in the thousands …from what I hear
My kiddo was never that high
I can tell you
Once they moved Ds to Stelara every 6 weeks (due to insurance)
His fecal cal went up to 168 from 15 .
Gi moved back to every 4 weeks and fecal cal went back to 15.

good luck
 
Thank You MLP. I had been refreshing hoping to hear your feedback.

3.5 years into this and I have more logic based thoughts now, but when something pops up the reminder that we have this is always a bit unnerving for me. Hoping we squash this quickly.
 
How's the ESR and CRP looking? Any symptoms? ESR over about 12 combined with the elevated calprotectin would definitely be a concern. I haven't seen a lot of success here with Remicade dose increases.
 
The dose increase will definitely make a difference. It did with my son twice. When he first started, it was increased and made all the difference. Then they reduced it, and he almost flared, and again increased, and it again got him to a better place. So in our experience, the shorter intervals did the trick.
 
Changing the interval can really help! My daughter absolutely needed Remicade every 4 weeks. Insurance denied it once and she had to have it at 6.5 weeks. Her fecal calprotectin came back high - not sky high, something like 200 - but she was definitely flaring. Insurance then approved it every 4 weeks and her FCP went down to 20 something.
 
Infusion went well, labs looked good, weight is up. 75% for height.

Came home and he had to poo, and we noticed some blood streaks, which we havent seen in over 3 years. I'll admit, I am bit unnerved to see that, but I guess its a result of the lower Remicade level. I hadnt taken a picture of a poo in a year, so havent some flashbacks and hope we can put the fire out before it starts raggin. I messaged his doc at CHOP with the photo.

Just wanted to vent. After seeing the labs and weight looking good last thing I was expecting was to see blood. Wasnt a ton, streaky. Guess it is good we had our appt today.

Do you think we are flirting with a drug change?

Thanks
 
I would see what doc says and how he does with the 4 weeks
A day or two of “blip “ blood can be expected even on “good” kids
Mine isn’t a bleeder in general but when younger did have 1-2 days of slightly bloody stool just to keep me on my toes
No sooner did I message Gi with pics and it would be gone

Hope the remicade kicks in
If not there are other meds
My kiddo is on his third biologic for crohns …
So it does happen
But no sense worrying until your switching
Even then
Outside of nerves med changes haven’t been too bad
 
As always thank you!

Had been so long since we saw any red, I had convinced myself we would never see that again..its got me flustered. :giggle:
 
I agree with MLP - I'd wait and see if the the frequency change helps. It does sound like his IBD is probably active but there are options before med changes, including doing EEN, doing a course of steroids and adding MTX.
And if he does have to change, it's not the end of the world. Humira has been tested in very young kids (2 years and up). Stelara is sometimes used in young kids as is Entyvio, if needed. So you certainly have options.
 
Hi All!

Hope everyone is doing well. Had our infusion yesterday, check with GI this Thursday.

His weight and height are up, blood work and CRP and Sed rate look good. One thing that stood out is hish Asparatate Aminotransferase has jumped to 77 on a normal range of 15-40u/l. His other liver enzymes look ok, phosphatase is a bit low. 77 is the highest I have seen for him for the Alkaline, just wanted to see if anyone else has experienced this. Not sure if it is drug toxicity we are seeing or just a blip. I will ask the GI on Thursday.

Thank you!
 
Real concern (you will get a call before you get home after the blood draw concern ) is more than 3 times the upper limit of normal
77 is high but more a draw again in 2-3 weeks high
Is he on mtx ?
Any antibiotics in the past month or so ???

my kiddo has slightly elevated numbers from mtx liver irritation (meaning after 48 hours from taking mtx his liver is happy again )
His has been high more than once because of antibiotics

my other kiddos without ibd has been high (70’s) but has been trending towards normal
Taken over a years time without using antibiotics
So …

I would see what Gi has planned
Odds are repeat labs in 2-3 weeks if there is no good explanation (aka antibiotics)
 
No antibiotics recently. We were on them for a bit back in April.

And no MTX since Sept'21, only change was the bump to 4 weeks on Remicade. ASAT has been in the 40's-50's usually. Back at diagnosis it was 68 and that coincided with his start on Remicade, then it normalized. It was 28 in Apr, 50 in May, 60 in June, 77 yesterday. I will be interested to see his remicade level.

I know I just vent for comfort, and your right they will re test and see if the trend continues. I just need to let this out some where so I appreciate the feedback.
 

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