• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Tater Tot and Remicade

Jmrogers4

Moderator
Is it possible he's simply done growing?
Maybe, I definitely think he's slowed down as far as height, only about a 1/4" this last time but at just a touch below 5'11 he's fine with his height (although he wouldn't mind a couple more inches). It's the weight that is really concerning now.
I guess if he is done growing in height we can see if a little weight comes now, I hope.
 

Tesscorm

Moderator
Staff member
I've already read that boys keep growing until late teens, even 20, 21??? But, my experience with S is that he had reached almost full height at 16. When he was dxed, a month before turning 17, he was 5'10".

He'd gone from 140-145 lbs to 120ish at dx. Since diagnosis/treatment, he's moved to 170-180 lbs but has only grown about 1 or 1.5 inches.

You do have to consider his weight loss and rising CRP/ESR but, perhaps, height isn't much of an indicator anymore??
 

Jmrogers4

Moderator
Yes I can remember just a couple of years ago that if he made it to 5'6" or 5'7" we would be happy. I of course want him to reach whatever his height is supposed to be without crohn's but dad's 6'1" and I'm 5'4" so I don't know if he would get much more than another inch or so anyway.
Which leaves us with that conundrum without vertical growth indicator anymore, how do we know if something is working well or not?
 
Yeah at this age I wouldn't be looking much at height as I would weight. A 6 pound weight loss sounds significant to me, especially a teen boy. Then when you add in the creeping CRP and sed rate:voodoo:

I have only met a handful of people on the 8 week schedule at our center. I am really hoping this is a simple matter of dose adjusting!

When is the next infusion? They are pulling the antibody/levels test right?
 

Jmrogers4

Moderator
March 8th (7 weeks). We are doing a weekly weigh in to see if we can figure out when weight really starts to drop.
 

Maya142

Moderator
Staff member
Would he consider an NG tube and doing overnight feeds to get his weight up? Tube feeding is the only thing that worked for M's weight - she gained 23 lbs or so in 2015. She couldn't drink enough Peptamen/Neocate to get her weight up.

Speaking of NG tubes, has he considered an NG tube for the MRE? Might make it a bit easier for him.
 

Jmrogers4

Moderator
We may be heading towards NG. I think judging from the past once we've gotten things under control he gains weight. We've done supplemental EN before for weight gain and he did great gained a bunch of weight (about 30 pounds) but within 6 months of stopping he had lost all but about 10 pounds.
I think his GI (me just trying to read his mind) wants to find the magic combination. When Jack was on the 10ml/kg every 6 weeks he was growing and gaining weight. We bumped out to every 8 weeks and he was good for about 5 months then started losing. What we've noticed is he gains weight right after infusion and 1-2 weeks before next infusion he loses around 5 pounds.
 

Tesscorm

Moderator
Staff member
Well, given S's positive response to using the ng tube and supplemental EN, you know I'm all for it! If he could do it as S did, 5 nights per week, it wouldn't affect his social life much (ie sleepovers with friends, sports away tournaments, weekends away). Most of the time, S's two nights off were Fri and Sat but, we would switch it up if necessary. Even if he was going away for 4 nights straight, we would just do 7 nights the week before and after. It really was a minor imposition for him - a few seconds before bed, even fewer in the morning. (Not saying it wasn't annoying at times... noise, jams, leaks, etc. but these were few.)

Even if the 7 week cycle gets his CRP/ESR down, I'd still consider the EN. While S looked okay when at 120s, he was definitely 'skinny', those extra calories and nutrition really helped him look 'healthier' and likely helped a fair bit as he transitioned from 'boy' to 'man'. S did EN with ng at exactly J's age now.. from 17 to 19. At that time, he was taking in 1500 cal/night.

:ghug:
 

Jmrogers4

Moderator
Insurance denied every 7 weeks at 10ml/kg but approved every 6 weeks at 7.5ml/kg, so waiting for GI's office to call to see if we need to appeal it or go with the 6 weeks at lower dose. In the 2 weeks since infusion, weight started at 123.10, a week later 130.8 and a week after that 133.4 which seems to follow his regular pattern, of increased weight which he drops all of it in the 1-2 weeks before next infusion so maybe the 6 week interval will be good and maybe since he's been so good that the 7.5 will be enough to keep him there.
 
Wow--that big weight gain right after the infusion is really encouraging. It does seem like increased frequency might do the trick. Hope that's all it takes.
 

Jmrogers4

Moderator
The only thing that worries me is we did the 7.5ml/kg every 6 weeks in the beginning and had to bump to 10ml/kg every 6 weeks before we moved out to every 8 weeks but he was not in as good a place so I guess is it going to be enough now?
 

Maya142

Moderator
Staff member
So insurance approved 10mg/kg every 6 weeks before? Maybe it's worth appealing then.

That is amazing weight gain - wow! Hope the higher dose works its magic!
 
Wow! That's awesome!

It is true that as they heal their body sops up less of the Remicade so just maybe the 7.5 every 6 will work.

Found this but don't know how to put it in the neat yellow box with study reference the way MLP does.

Arguably, shortening the dosing interval to 5 mg/kg every 6 weeks is appropriate for patients with shortened response to infliximab, whereas double dosing (or interval halving) should be reserved for patients with complete or early LOR to the last infusion.[8] Although this rationale is clinically sound, and has underlain physicians' therapeutic choices for a majority of patients in our study as well, the clinical outcomes of these differing policies have not been previously investigated. Thus, we believe this study is important for being the first to compare between these two management approaches. The results suggest that escalation of the therapeutic regimen to once every 6 weeks appears to be at least as effective as doubling the dose or halving the interval, especially for patients with late postinfusion LOR (re-emerging symptoms 5–7 weeks postinfusion).
 

my little penguin

Moderator
Staff member
Cic when you post you click the comic book bubble
Then the code for quotes appears
Put a space between the "
"
Paste your text

Easy as pie

Agree the 7.5 mg every 6 weeks might work this time maybe
What were his levels like at 10 mg every 8 weeks
Did you have them taken 4 weeks in ??



Good luck
Ds was put on 7.5 mg every 6 weeks when he was on remicade
 
I've ranted before on this, but why do insurance companies get to decide the treatment of our children? It just infuriates me.

That is some pretty amazing weight gain!
 
P.S. If he is gaining that much weight make sure they weigh him and adjust the amount they put in the bag according...docs write the script for total amount. This is why as the kids gain they get less and less mg/kg and you have to make sure they are watching weight.
 

Jmrogers4

Moderator
Benefit of getting his infusion at his GI's CIC, he gets weighed when we walk in the door and they order the remicade accordingly so his last insurance approval was for 10ml/kg so it's been between 560ml - 580ml depending on his weight.

Agree Mehita, insurance denial says based on research blah....blah....blah but GI is basing his decision on his research of my kid and what has worked for him.

MLP not sure what the exact number is, I thought I had it in my paperwork but not seeing it. I'll have to ask him for another copy. We had it done at 8 weeks and he was definitely in acceptable levels with no antibodies. I remember discussing the numbers. We have not done at 4 weeks.

Just want to make sure he's in a good strong spot lots of stressful things coming around the corner, baseball tryouts, ACT & SAT tests, he and his girlfriend just broke up and our 11 year old dog is going downhill fast. I realize that's it's really very typical high school stress levels but since he seems to be sliding back a little I'm afraid that slippery slope is going to get steep really fast.
 

my little penguin

Moderator
Staff member
I am surprised they did the level test at the infusion at 8 weeks
Our Gj specifically told us the test is designed for about 4 weeks out
Not that it matters but might help with appeal
 

Jmrogers4

Moderator
We were going to wait until 4 weeks after but then his GI decided it would be worth it to find out end levels since it seems to be the last 1-2 weeks where weight loss happens
 

Jmrogers4

Moderator
Wow! it's been over a year since I've updated/posted on his thread. All continues to be well. Despite my skeptical reaction to reducing the amount of remicade he thriving on 7.5ml/kg every 6 weeks. He is a bit over 6 foot tall and continues to grow. We know his growth plates in his wrist are still open as he fractured his left one a little over a month ago.
J graduates from high school in less than 2 months! He is looking forward to a busy summer with a graduation trip to Greece for 12 days then home for a couple of days to get his infusion and off to Camp Oasis where he will be a counselor this year. For anyone reading this and worrying about biologics I can honestly say I don't think he would be able to do all this if it were not for remicade, it really has given him his life back and allowed him to not worry about Crohn's.
His GI has scheduled an MRE for July since it's been just a little over 3 years since the last one that started us on the Remicade journey and he wants to make sure all is okay before sending him off to college.
Hope everyone's kiddos are already there or are on the path to remission I can't tell you enough how much your support, encouragement, and sometimes the smack upside the head that I've needed have meant to me.
 
What a great update! Glad to hear that everything is going so well--I can't believe that he's still growing!
 

Tesscorm

Moderator
Staff member
It has been a long time!! Hadn't seen 'Tater Tot' in the threads for ages! And, am so glad it's with a great update!

They're all growing up... hard to believe when I first found the forum, us 'oldies' were all here with young kids/teens and now, more than a few, are young adults! :eek:

Sounds like his next few months will be amazing! Graduation, Greece, camp and then, off to university! Wow! Best of all, he's feeling good for all of it! :D

Where did he end up deciding to go for school? Far or nearby? What an exciting time for him and you! :hug:
 

Jmrogers4

Moderator
He will be going to Idaho State University it's about 3 hours away (perfect distance for mom) he still gets to go away for college and I know that I can get there quick if needed. He has several friends that are already or will be attending. I think he made a good choice.

It's hard to believe these kids who are not kids making decisions and starting on their own lifes. I sent him to his first infusion without me and of course everything went fine but I was a nervous wreck, guess I better get used to it.
 

Tesscorm

Moderator
Staff member
Yes, 3 hours isn't too bad. S is about 2 hours... it's certainly a manageable distance. ;)

And, yes, YIKES, there are times/situations when it's a bit tough to let go at the beginning. :eek: Infusion... I'm sure the next one will be much easier. :) S goes to all of them on his own. And, when we schedule one for the centre near his school, I've sometimes even forgotten about it on the day it's scheduled. :)

Unfortunately, I do still find we need to step in and advocate at times (not sure when they start being seen as 'real' adults!). Perhaps it's a function of being in a 'university' town but we've found the walk-in clinics (including the school's) and local ER department tend to be fairly complacent when it comes to students. And, S is quite knowledgeable (ie shares the right info, asks the right questions) about remi, crohns, etc... but, still he often gets brushed off with 'yep, we're seeing lots of this. Come back if it doesn't go away.' :ymad: He went to walk-in 2-3 times and local ER twice in 4 weeks and all they gave him was a puffer. Finally, he was so sick, he called me to go with him; I brought him back to ER here and he was dxed with strep. :ymad:

But, I suppose, all stages in the final transition of them becoming a full-fledged adult! We're almost done our jobs! :ywow:
 

Jmrogers4

Moderator
Y'all will appreciate this, Jack had his first infusion at college on Monday in his dorm room. The day starts off with a call from the home health nurse "Uh this is T, and I'm calling to schedule a time for infusion" - Um did you call Jack? You're listed as emergency number and he didn't answer, well it's 8:30am and first class isn't until noon he's probably still asleep did you leave a message? No, - well I'll send him a message to call you but he told me he had scheduled for 2:30. Oh- Uh yeah I see that here. REALLY :ybatty: not instilling a lot of trust here with mom, who is 3 1/2 hours away I'm thinking do I need to drive out there to make sure he gets his infusion, No I just need to settle down. I tell myself it will be okay they do infusion all the time, right?

I send Jack a message by text and via Amazon Alexa (if you have a kid away at college this is a handy little item). Get a message back he is all set for 2:30, his meds were delivered last Friday and are sitting in the fridge in his dorm (yeah that's not worrying at all to have $20,000 worth of medicine sitting in a dorm fridge) but tell myself "see it all worked out".

Jack skypes me about 1/2 way through his infusion "look we rigged up something to hang the IV from the ceiling" What? there is no pole? I hear from the nurse in the background "You have a pole at home?" NO! who has an IV pole at home... is it something we need to provide? Oy Vey :ack: it is going to be a long year! But Jack really liked him they spent the whole time talking fantasy football...
 
Lol, lol, lol
I have an IV pole at home.
Would your son like it? It has cut out of a paper castle at top and princess stickers stuck over the pole.
I'm sure i can find the fake ivy that used to wind around it.
It'll cute in his dorm.:ylol:

Good grief. How did the poor nurse think this was going to happen?
 

Maya142

Moderator
Staff member
You can actually get small portable IV poles. We have one because of my daughter's tube feeds. She actually does use it in college!! Let me see if I can find a link.

I can't believe the nurse thought Jack would have an IV pole. Do his patients usually just have IV poles lying around :lol:? I'm surprised the home infusion company doesn't make the nurse carry one.

Glad everything went well finally...it'll take some adjusting to, I'm sure ;). Probably harder for you than him!!
 

Jmrogers4

Moderator
Lol, lol, lol
I have an IV pole at home.
Would your son like it? It has cut out of a paper castle at top and princess stickers stuck over the pole.
I'm sure i can find the fake ivy that used to wind around it.
It'll cute in his dorm.:ylol:

Good grief. How did the poor nurse think this was going to happen?
Maybe we should get him to wear a tiara too. Did I mention his roommates are rugby and football players :ylol: maybe we can get them all to be princesses in support (I'd have to post pictures of that)

A link would be great Maya since I guess we are looking at the next 4 years right. I would have assumed the home health would have one as well.

They did not do his normal rapid infusion but I think I'm okay with that judging on how it all happened I don't think throwing another kink in the system would be a good thing.
 
Maybe we should get him to wear a tiara too. Did I mention his roommates are rugby and football players :ylol: maybe we can get them all to be princesses in support (I'd have to post pictures of that)
Lol. If you could guarantee a picture.
I go all out and give you the tierra that Grace got from Cinderella's castle.
It'll go viral .:ylol:
 

Tesscorm

Moderator
Staff member
:rof: It is hard becoming an arms length PITA mom! :lol: There might be a couple stumbles here and there but, they do seem to take it in stride better than we! :thumright:

Instead of going through the whole exercise of getting a pole, etc., could he make do with attaching a (strong) coat hook on the wall?? Given the small size of dorm rooms, he could use it for his coat or knapsack in between infusions and wouldn't need to store the pole anywhere in his room?? :)

But, regardless, I think it's amazing that they go to him for the infusions!! :thumright: :thumright: And, way to go mom, for not jumping in the car right away!:dance:
 
Hey y'all I'm baaaaack!

O is at college also. A time zone, 7 hour plane ride away and then a 2 hour drive from the airport away! She says adulting is hard.

Week of her infusion I see a claim on insurance for University medical center. I text and ask what for. Oh nothing...everyone in my suite is sick with some coughing thing. I have been coughing for weeks and got really sick so got checked out. Just some chest infection. Got some meds. I will be fine.

You can imagine the alarms that sounded and the back and forth between University, mom and GI.

Her first dorm infusion was rough also. Try to get Remicade sent to a dorm room! They can't. Gets sent to mail room and if it gets there Friday afternoon after they close it sits there all weekend and it is supposed to be refrigerated. So send to medical center but insurance won't approve because she can't get infusions at medical center. Try to explain that is just the shipping address. Medical center called her to say, "Remicade arrived" and she runs by to pick up her vial and turns out there were three huge boxes. Home infusion place sent supplies of wipes, gloves, pole, epi pen, solumedrol, tubes etc for the whole year! Then home infusion nurse shows up and he didn't have a pump! They actually wanted her to do gravity but insurance only approved two hours of nurse time. Luckily she had a nurse with a healthy disrespect for procedures and he took the campus shuttle bus back to his car to get a pump he travels with and he made up the titration schedule based on his experience.

Glad it all worked out.

I'll be posting a big hello to y'all soon.
 

Jmrogers4

Moderator
OMG CIC, she must be across the country! They overnight Jack's med from Salt Lake but yep he receives it on Friday and same thing overnighted from Salt Lake and he texts me when he picks up from mail center. He has his next infusion on Monday so hopefully it smoother this time although he does now have a command hook (actually several) he got from a girl. I just was there over the weekend for family weekend.
He got the epi pen and some adrenaline type injection as well. I went over with his roommates while I was there on directions for use and what to look for if it's after nurse has left, luckily he is rooming with his best friend and everybody was comfortable with explanations because the nurse did not tell anybody how to use epi-pen.
I love that we have maintained contact through this forum and fill as if you are all part of my extended family and am so excited that I have really gotten to experience all of these kids growing and spreading their wings. And it certainly helps me to know when to step in and when to let him "adult".
 

my little penguin

Moderator
Staff member
Please remind the "adults "
Epi pens can not be kept where they see sunlight or heat
So not stored in any cars for any length of time
Or cold for that matter
Che k periodically to make sure the window is still clear and not brown

Always make sure they have at least two in hand
Good luck
 

Jmrogers4

Moderator
So not the fridge? Nurse told him to put in fridge but he totally could have misunderstood and just the adrenaline need to be refrigerated or even just the remicade. I guess we (he) better get some clarification on that. We have never had one before because they had them at the infusion center.
Thanks MLP I would have never known.
 
Thanks for the updates, CIC and Jmrogers!

My daughter is in 10th grade this year, but I am so not ready to think about college yet! She still has enough trouble getting through her infusions that she is already talking about staying nearby for college...
 

Jmrogers4

Moderator
Thanks, looks like we'll be ordering new epi-pens as they've been in there for 5 weeks. UGH!!! Texting him now...
 

my little penguin

Moderator
Staff member
Epi pen has a copay card to get it to zero
Audi q is smaller same drug but has voice instructions
We use that so if folks panicthey can hear step by step what to do
Also has a zero copay card from the drug company
 
MLP to the rescue!

LOL "adults".

I will text O now and can guarantee her response will be, "mom, it's fine". I think she has that on auto fill in.

I can't believe how fast these kids grow. Grace is 8?! PDX's girl in 10th grade? How did that happen?
 

Jmrogers4

Moderator
Jack's response when I texted him - OK... OK what? OK you got the text but are you going to do anything about it?
Don't even get me started on his flu shot. He walks by the health center multiple times a day as it is literally right next to his dorms has he stopped for the 5 minutes it will take to get his flu shot. No!
 

Maya142

Moderator
Staff member
My daughter did the same thing last year with her flu shot - she even went to a flu shot fair, waited in line and then decided the line was too long!

She ended up in the hospital needing surgery (J tube) and one of the first things they asked was if she'd had a flu shot. The doctors were NOT pleased when she said no. Of course, since she was having surgery, they couldn't give her one.

She ended up getting it in mid-November, if I'm remembering correctly.

This year she got it in early September, before school even started. I guess she learned her lesson ;).

For both my girls, the first year in the dorms has been tough - lots of colds, throat infections etc. The health director at my older daughter's school told her it's like living in a petri dish.

I send LOTS of Clorox wipes and cleaning products to school.
 
LMAO!:rof:

My text convo went like this:

Me: Hey there...can I ask you where you are storing your epi pen?
Her: What? no.
Me: No I can't ask?
Her: No, I don't think I got an epi pen
Her: Why an epi pen
Her: Actually idk
Her: I didn't look
Her: Are they shipping me more stuff soon because my infusion is on Monday and I haven't gotten any
Me: just do me a favor and look and see if you actually got the pen they said they would send and yes a shipment is coming and don't forget to get your lab draw.
Her: wait labs? when? where?

So she is storing all her supplies in a rubbbermaid bin, under her lofted bed behind those plastic chests of drawers (because no college dorm has enough draw space for an 18 year old girl). A lot of good the epi pen will do her way back there. The kid could be dead by the time the nurse found it back there. And hello? You are just now wondering where your shipment is? And hello? GI gave you one infusion off from labs and you forgot about them?

I guess there is only so much room in their little brains for knowledge and they are crammed full with philosophy, economics, game stats and party schedules.

JM: yes across the country! And she thinks she is getting a job there over the summer!:ywow: Both our kids are getting infused Monday!
 

Jmrogers4

Moderator
:ylol::ylol:
Asked Jack where it was when I was there over the weekend and he tells me it's in the fridge so I open the fridge, where? in the brown bag. Brown bag all the way in the back behind the 6 gallons of milk (yes you read that right 6 gallons of milk) why 6? because apparently they willing drink a lot of protein powder shakes and go work out. They keep trying to get Jack to drink them and go work out, he will occasionally work out but drink the protein drinks never! Gives him PTSD he says.
Jack just informed me that the YMCA group that hosts Camp Oasis in Washington wants him to come work for them all summer as a counselor and he is going to do that so I feel for you about not coming home for the summer.
On a good note, he has gained 2 pounds (his freshman 15, I wish it was actually 15)
 

my little penguin

Moderator
Staff member
Please keep in mind
Anything more than a mild allergic reaction to remicade will typically not be stopped by an epi pen
Since the drug has already circulated through out the entire body by the veins

Tonput it in perspective
Allergist do open food challenges
They have the person eat a tiny amount Bit by bit
But the allergist will not challenge in a normal clinic
Only in a full hospital with an ER within seconds
This is with epi pens standing by
Drug reactions are much harder to stop
And keep from progressing to anaphylactic shock or death
It's that simple
Insurance wishes to save dollars
Hoping there is never a reaction

Please ask your home health nurse what the protocol is in a home setting vs infusion clinic setting
 
MLP to the rescue!

LOL "adults".

I will text O now and can guarantee her response will be, "mom, it's fine". I think she has that on auto fill in.

I can't believe how fast these kids grow. Grace is 8?! PDX's girl in 10th grade? How did that happen?
Your O and Jack are in college:eek: That's what's crazy.
 

Jmrogers4

Moderator
Well just had FC done right before next infusion and yep elevated! Haven't made the call to doctor he has infusion tomorrow so I know will be good for several weeks. Had Remi levels tested at the same time and have not gotten those results back yet. Is it 2 weeks for results?? It's only been one week.
He went back to college last Friday, says he feels fine. Send good mojo that we just need to adjust dosage/timing and he is not developing antibodies.
 

Maya142

Moderator
Staff member
Fingers and toes crossed that he just needs the dose upped!!

But to make you feel better - citrate free Humira is now available to kids (and I have heard of some adults getting it) and it is MUCH better apparently. So even if he's failing Remicade, there are options :ghug:.
 
Fingers crossed here too!

My daughter seems to have a mini-flare just about once a year, and a small Remicade dose increase has taken care of it every time. She even had low levels of antibodies at one point, and a dosage change took care of that too. We're actually doing a calprotectin test next week to see if her latest dose increase from back in April is working.

Our levels tests usually take a week to come back, but it has occasionally taken up to two weeks.
 

Jmrogers4

Moderator
Test is back - no antibodies and levels are good, so WTH does that mean since we have abnormal FC :angry-banghead: Something else? He has not been sick so who knows.... the plan since he just emailed his GI about protein supplements since trainer for baseball would like him to take them and gain some weight (really like we haven't been working on that for years!). GI doesn't want him to do supplements but would rather have him on the nutritional shakes again so while he is not thrilled (I think it just brings up some bad memories of the last time he was on them). He is going to supplement with them. GI is hoping to kill 2 birds with one stone and that it will hopefully help with any inflammation. (we will retest in a few months).

I'm a little worried as you all know Jack doesn't tend to show much from labs so FC of which normal is less than 50, he was 135 - This is the new GI who says he doesn't worry unless it's over 250. Past results with different normal (different lab/pediatric vs adult) of 162.9, no symptoms he was at 90, high inflammation times he was 294 and 335. So at 335 we were discussing surgery because of the level of inflammation at TI so double that labs normal range now at nearly triple I'm not supposed to worry because it's not that high in the high range?

So I guess I'm once again at the wait and see stage... hopefully everything levels out and this was just some random weird months. He feels great until a week to a few days before infusion then a little eczema, maybe some urgency a day or 2 before.

I'm heading out to see him next weekend for their first baseball game of fall season so at least I can lay eyes on him.
 

Maya142

Moderator
Staff member
I think you probably need an MRE to correlate with the FC since his FC tends to be low. My daughter is the same - her highest FC was 480. Her GI prefers if her FC is under 50 and she has increased M's Cimzia dose for an FC of 120 before (at LabCorp, <50 is normal, 50-120 is borderline and over 120 is high).

I think the test is actually the same - it is the range that changes. But I'm tagging crohnsinct since she knows more than me.
 
Do you know the actual value of his Remicade level? E's levels were OK (I think around 6?) last spring when she was in a mild flare, and her doctor still agreed to boost her dose a little, and it helped--her FC came down, and her symptoms improved. Her GI said that there's some debate lately over what the therapeutic level actually is, and that she's been aiming for higher levels.

High FC with good Remicade levels can also mean that you're losing response, but it doesn't sound like that's the case for Jack, since he's having symptoms just before his infusion. To me, that points to just needing a higher dose.

Have fun at the game!
 
Calpro levels.....different labs, different normal ranges...here is the funny thing. If you are using LabCorp, they send their tests to Quest. LabCorp uses a normal level of 50 and Quest uses the 162.9. Funny huh? NOT. The labs are just reporting normal for their experience with their patient population etc.

Most GI's don't really perk up until around the 200 mark and many still don't take action until 300-500. However, our new GI who has studied calpro extensively and is obsessed with it has these pearls of wisdom (and p.s. I am seeing a lot more GI's follow suit):

- small bowel disease tends to not raise as high as colonic disease
- when we first met him he said he likes small bowel disease to be under 100 and above that he starts thinking about tweaking. That said, T (small bowel disease) has been around 150-200 for about 6 months now and he still isn't changing anything. Just careful watching.
- they are finding that the general population is showing higher levels of calpro. Even people with IBS and rheumatoid issues are showing higher levels than 50. So perhaps the normal will inch up also.
- calpro is very variable so you wouldn't necessarily make a move based on one level. Remember O recently had an elevated Calpro and with us doing nothing 4 weeks later it was 25!

I am also curious as to what his Remicade level is. 5 is considered therapeutic but a lot of the studies etc now are showing that we should be aiming for 7-10. Especially given Jack's appearance of some symptoms right before infusion and the slightly elevated calpro, he may just need a tiny bump up in Remicade.

I wouldn't raise the alert to red just yet but I would definitely be in yellow and reminding new GI about Jack's calpro/scope correlation and asking for a repeat calpro at least with next infusion and hoping GI pulled it at 4 weeks. If it is elevated at 4 weeks, then I am in orange territory because Remicade should have brought it down. But again, with T her Remicade dose didn't bring her 183 down 4 weeks later she was at 195. Given the variability not a freak out be Remicade clearly didn't bring it down to normal and her GI is still watching.

One other thought is that as we age and mature our bodies go through changes. So maybe, just maybe Jack's calpro isn't as sensitive anymore? One can hope anyway right?

Did he have any kind of gastro bug? Even a little diarrhea for a few days?

Oh and remind him that if he gains weight his Remicade dosing has to change to accommodate that change! The last thing we need is for him to be decreasing the dose while we are sitting in yellow!

Enjoy the game! I am super glad you will be seeing him!
 

Tesscorm

Moderator
Staff member
Ugh, I hope this resolves on it's own. And, glad you'll be seeing him... will give you a better sense of how he is.

Just on remicade serum levels... the last time S's were checked, his level was almost 12 (antibodies were <2). Based on what I'd read at the time (approx. 2 years ago??), the target therapeutic level was 5-8. So, given that S was at 12, I asked his GI if we could extend the cycle to 7 weeks. He didn't agree - said he had patients who had levels of close to 20 with no increased problems (ie infections), also that the 5-8 level was a guideline only and, having S slightly above (at 12) gave a cushion if S needed to delay an infusion by a few days... just another comparison for when you get Jack's levels.

I'd also once read a study showing that adding nutritional shakes increased remicade's success rate. I recall posting it in the Kid's research subforum. Perhaps something you can print out and show to Jack?? Just to try to convince him to stick with the shakes??

Really hoping this resolves on its own though.. and quickly! :ghug:
 

Maya142

Moderator
Staff member
What about trying different shakes than he was on as a kid? For example, if he did Peptamen Jr then, maybe you could switch to Ensure or Boost (Boost Breeze has juice-like drinks I believe) if he can tolerate polymeric formulas or if it has to be semi-elemental, maybe a different one - Pediasure Peptide and Kate Farms would be options.
 

Jmrogers4

Moderator
Don't know the exact levels he asked GI if the test was back, GI called the lab for results so I'm assuming they will post once they officially receive them if not I'll call next week and see what actual results are.
Ordered him Orgain shakes they should arrive on Tuesday. He says he will at least do one before baseball practice and one after work outs. He did not want to do pediasure (apparently something about being in college and not wanting to drink kids drinks with the team :yrolleyes: )

Yes CIC you've hit it I'm on yellow level! I want more info. Last MRE was only a year ago and was perfect but things happen and change and I want to acknowledge that but just having a hard time with what would be a normal change. We have traditionally needed to be on the higher end of therapeutic to see improvements at least with other meds and if I'm remembering correctly when his last GI pulled levels he was within therapeutic but he bumped anyway based on symptoms and all was good after that until now.

And hugely worried about weight and dosage as while he is at school as while home and going to infusion center they weigh him as he comes in and order remicade based on his weight. Home infusion he is not weighed at all (in fact I don't think there is a scale in their apartment) medicine is sent and nurse comes out next day to infuse. Probably something to bring up with GI.

Labs were done once while he was away at school last year, hoping to fix that this year. I believe GI wants to do another FC but not sure what the timeline is on that.

I guess I'll trap Jack by taking him grocery shopping after game (he won't turn down free food) and give him a list of items for GI. He has an appointment in December, I think I will ask if I can go with him at least for the first to get my questions answered so I'm not playing what is actually said.
 

Jmrogers4

Moderator
I guess it's been a while since I've posted....
We did up the dosage he's back at 10ml/kg every 6 weeks and drinking Orgain shakes. Weight is good (for him).
He is now getting infusions at an infusion center near school so regular labs are being done once again.
He is doing well and enjoying the college life, eats lots of pizza since he works at Papa Johns.
I will get to see him next week during spring break.
 
Top