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Sibling being evaluated

my little penguin

Moderator
Staff member
Glad the number went down
But if she has sacroilitis or JSpA that can't be fixed by Diet
So she still may need biologics

Let us know what the appt brings

Good luck
 
Hard to say...seems like she has always complained of something or another bothering her but the real tough stuff was over the summer and the lower back/hip recently...so 6 months out for the tough stuff and 10 months for back and hip.

But remember, she probably had Crohn's for a bit longer than since January...I would guess maybe even years.
 
I keep missing things. She's being evaluated by a rheumatologist soon as well?(I saw mlps post).

Fc looks awesome. If you haven't had the rheumatologist appt yet then I'd just keep on keeping on. Goodness knows things will change when they change ie appt, test results, symptoms. If everything is good now I'd just enjoy!
 
No rheumy appt yet. Mentioned her aches and pains and recent back and hip and the fact thAt she can't sit for too long without having pain and he said bring her in sooner. May be sacroiliitis.

Ps. O also is having hip issues. We are treating it as injury for now
 
She is enjoying things tonight! Doc wrote back and approved 30% food so a lot more than we expected! Happy Days!

O is nervous that if the increase in mtx doesn't work for her he will say EEN for her as well...at 16 she isn't as likely to be so amicable to that suggestion:ylol:
 

Maya142

Moderator
Staff member
Wonderful that the FC has gone down!!! Really hope diet works for her this time. Seems like EEN really does work like magic!

You know what I think -- T needs to see a rheumatologist as soon as possible. If it is JSpA, there is no point in letting it get bad. For M, it was mild to for a while and we kept calling it "sports injuries". I wish we had addressed it then, instead of letting it get out of control.

JSpA is also cyclical like Crohn's - sometimes kids are flaring, and other times they're just fine. My kids now do live with pain, but when they were first diagnosed, there were days were they were just a bit achy and stiff and even days when they felt totally normal. It wasn't always excruciating pain, all the time.

In fact, there was a time M was ONLY on Tylenol and nothing else and she did great (it did last only 3 months :lol:).

Signs of JSpA - back and hip pain, heel pain, knee pain, pain after sitting for a long time, morning stiffness, pain that improves with activity, pain that migrates from joint to joint... all this makes it very hard to diagnose. I don't know the numbers for JSpA off the top of my head, but for AS, it takes around 8-10 years just to get a diagnosis!!
 

my little penguin

Moderator
Staff member
DS started complaining of joint stuff in 2012 but was followed by a Rheumo
And dx as JSpA in June 2014 so that shortened the time but still takes a while
 

Maya142

Moderator
Staff member
M started complaining of joint pain at age 8 and wasn't diagnosed till 12. S started complaining at age 9 and wasn't diagnosed till 14. It took that long even though my husband has AS. We just didn't believe that they'd inherit it and when S did, we figured there was no way that M would too (what are the odds, right? Well, high apparently).
 
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Yikes guys! Scared about what that means for poor T. Took three years for GI to pay attention to her and now the joint issues...we are just hoping for a referral to rheumy at this point...and then more waiting?
 

Maya142

Moderator
Staff member
Well, the fact that she has Crohn's might speed things up. And if she sees a good rheumatologist that will too. M really should have been diagnosed years earlier, but we weren't seeing a good rheumatologist who just wanted to wait and see..and wait and see and wait and see....We should have switched much earlier but we just blindly believed her.
 
Crohnsinct,
I'm so happy to hear about the FCP and the FOOD!!!! Good for her.

I hope you get some clarity on the joint issue soon. Hate that is clouding over the good progress she is having against Crohn's. I guess we celebrate the victories we get and hope another one is around the corner.
 
Had T's appointment to investigate joint issues. Didn't get far with that. GI just said it could be related to IBD inflammation or independent. IF IBD related control the Crohn's and joints get better. If not, then rheumy. So his plan is to try to figure out what is going on with her Crohn's...it's only been a year...what's the rush?

So, after just a week at 30/70 he asked her if she would like to move to 50/50...ummm that is a no brainer! He said given what happened last time, pull another FC in 4-6 weeks...then he said actually let's scope at the same time. He said he really wants to scope her and she has to be on at least 50% food for at least 4 weeks to get an reliable information.

He also said he isn't confident that there is any great benefit as far as inflammation goes to the diet we are using and that it is o.k. to add back in grains and such BUT keep it clean and healthy.

T was thrilled and said she could actually live at 50/50 and a total of 2000 calories with EEN once or twice a year as long as she didn't have to do the exclusion diet.

So scopes around Christmas and we will see. I think the committee feels it is just a matter of time before inflammation returns...the issue is at what percentage of food and after how much time...shall we start a pool?
 
I hope for her sake that inflammation doesn't return too quickly. Drives me batty when they take a wait and see approach but you know there's something going on.
 
I bet 6 weeks once the 50/50 is added. At least that held true for Grace. What does the winner get?

I do hope and pray that it doesn't come back and she feels great!
 

Maya142

Moderator
Staff member
I bet 4 weeks on the 50/50 diet! Although I really hope it works and you can be the first to tell us about how diet = clean scopes ;).

Sending BIG HUGS :ghug:.
 
I wouldn't be the first...Optimistic beat me to it. Plus I don't think her child uses any meds...T is on mtx. But I would settle for second place!
 

CarolinAlaska

Holding It Together
This is terrible. Makes me crazy. If the doc and everyone knows she's going to be sick in just a few weeks, why aren't we giving her real treatment!!!

Here's to scrapping all this and begging for Remicade! Why must the docs have to have them in the hospital before they take them seriously?!
 
Update:

T had her scopes 1/15. Bottom line not a lot better but not worse.

One new ulcer in duodenum - there weren't any at dx.
Only one ulcer in stomach - at dx there were many
Terminal Ileum had cobble stoning - at dx he didn't mention that...just inflammation.

FC is 514.

His advice is to stick with Entocort 3mg daily and the 15mg weekly mtx.

He felt joints issues are not caused by IBD and gave us a rheumy referral.

Rheumy did a pelvic MRI. No sign of inflammation. She is chalking up T's joint issues (ribs, knee, ankle, hip, shoulder and lower back) to activity...more specifically softball (she is a catcher). She advises PT and Tylenol. Will call to check in with us in a few weeks. If PT is working then continue, although I am sure insurance will not approve it. If PT doesn't work rheumy and GI will talk and see what they can come up with.

Right now we are dealing with a concussion so will pursue PT as soon as she feels better.
 
Oh man--you do have a lot going on lately... Hope the concussion heals quickly. (I know you don't need any convincing of this, but I'd still be pushing for biologics with that FC and those scopes results.) :ghug:
 
I am sorry to hear all of this.

I'm really not sure how to parse this all out. Many hopes here - that you and GI have some wisdom and clarity on next steps, that the insurance company cooperates on the PT and it helps, and that she heals quickly from the concussion.

:ymad::sign0085::wine::confused:

$*&^
insert whatever word you choose above

Crohn's sucks.
 

my little penguin

Moderator
Staff member
Big hugs
Still confused how entocort can be a long term plan
It's still steriods even if the side effects are lower
Add in she still had inflammation found on the scope
Wishing you the best
 
Goodness, seems like she got it coming from all directions, hope things heal quickly, PT goes swimmingly and all the rest gets a good solid plan that brings about remission.
 
Yeah I know:yfaint:

For right now her Crohn's isn't bothering her as much as her joints are...but then again joint pain is usually one of her signs that something in her gut is off.

We are going to do the PT and Tylenol and see if that helps clear up the joints. If it does then we will sit tight and wait and see what happens with the gut. If it is a repeat of past performance her FC will go up to 700 or so and maybe then he will decide to do something. If her FC goes up and/or she experiences more GI symptoms AND he doesn't move then we will pursue another opinion.

Her next follow up is in May and Rheumatologist is calling in two weeks to see how joints are. She starts PT today. :thumleft:
 
T continued to have joint pain and over the past few weeks GI issues. We pulled her FC a little early. It was 508. No change since her last scopes.

We have tried EEN followed by diet twice. She has been on Methotrexate for a year and Entocort (steroid) for 10 months. The GI feels it is time we move to Remicade so I gave the go ahead today.

Hate that mild disease doesn't respond to moderate drugs but looking forward to her getting to a true deep and sustained remission.
 
Hope it works wonders for her. I totally get moving on to remicade when it seems like you shouldn't have to although I'm glad we did with my 20/20 hindsight now. If only I had that crystal ball before hand.
 
She is a little miffed. She wanted to try EEN and diet again but the doc and I both think that isn't a fix. Just more of what we have been doing and will only delay the inevitable.

She sees her sister on Remi and knows it works and the infusions are nothing but she HATES the scheduling aspect. She also hates attention and docs offices so that doesn't help either.

She will love it though once she feels better!
 
Well CIC I know you think of literally everything, but what about Humira as an option. Sorry, if I missed this in the post. Shots usually twice a month after the loading dose, (it does burn, but in 10 seconds it's over) could help with her joints, she doesn't need to miss school or anything else with you controlling the schedule. Hope you get her sorted out quickly! Hugs!
 
Hey girl! Nice to hear from you again and see you are still hanging around!

Don't worry I appreciate any input!

I didn't get to ask the doc his reasons exactly but at scopes in January he said " remi or humira but remi is better and humira is just a mess that you don't want to have to deal with". I don't know what the supposed mess is. But I do know he has told me in the past thAt he likes to use Remicade first so if or when it stops working maybe they will be in college or working and then can switch to humira when time off is a much bigger issue. Also when they are young and growing remicade offers more dose flexibility than humira. Umm and last is convenience of labs and his office gets to see the kids more often. He has the infusion nurses report back on how they think the kids "looked" in addition to how they say thet feel if it doesn't match up.

So basically our GI is a control freak. No wonder he and I have a love hate relationship😂
 
Yikes! Have I not really updated T's thread in a year and a half? I think some of her goings on have gotten posted to O's thread.

Anyway, she has been on Remicade since 4/16. Doing really well.

FCP of 89 in August.

Recently with our move to the west coast some complaints of stomach pain, nausea and recently joint pain.

You may know our new GI doesn't like FCP of over 100 for small bowel disease and questioned whether T's FCP was going up or coming down. Gi pulls FCP at every infusion but T's body didn't cooperate until the February infusion. FCP = 250.

So GI wants to repeat FCP in a month and take it from there. Not really sure how he went from FCP of over 100 = treatment adjustment to retest in a month but he is doing very well by O so I am going to trust him for now.
 
Hopefully it just needs a little med tweaking or maybe it's the time of year where the kids get set off by flu etc. I think it's good he's looking for a trend and not a snapshot.
 
Yes, if elevated he will adjust her Remicade dose.

We went back and forth a lot last night after O's result came in. He says treating to target fecal calprotectin has revolutionized his practice and made a big difference in his patient's lives.
 
We went back and forth a lot last night after O's result came in. He says treating to target fecal calprotectin has revolutionized his practice and made a big difference in his patient's lives.
That is so interesting. I wonder if that will become the norm in the future.
 
Hey y'all...T's repeat cal pro was done 4 weeks after her infusion and returned at 160. So down from the 250 but still elevated and only 4 weeks after infusion. She is symptomatic. GI expects cal pro to continue to rise until next infusion and says she likely is not at mucosal healing.

We are moving her schedule from every 8 weeks to 7 weeks for this next infusion and possibly increasing dose...we will discuss at next infusion because that will also be her visit.

His tidbit for the day:

He mentioned that research shows that when tested, greater than 80 % of patients on Remicade on 8 week interval do to have therapeutic levels of the drug at 8 weeks.
 
Sorry to hear that she's still having symptoms. Let us know what you decide about dosing at your appt. (What dose is she on right now?) As you know, we're making similar decisions this week...
 
Yeah...funny how your daughter and at least one of my daughters seem to run parallel to each other.

She is currently at around 5.5mg/kg every 8 weeks. We switched to this GI in November. She was complaining of stomach pain and nausea but we were all thinking it was more likely the stress of the move, new school etc. It is o.k. with me when this GI says that because A) I was thinking the same but B) he pulls cal pro at every infusion so he watches the kids VERY closely.

Good luck at your appointment. Keep us posted. Ironically T has her infusion and appointment next Friday.
 
T had her infusion on Friday and the GI said if she had another elevated (150's or more) cal pro we would escalate therapy.

Oddly her cal pro came back at 97.7. Her first level 7 weeks ago was 250. Then went down to 160 four weeks later wth no intervention and another 3 weeks later down again with no intervention. I am not complaining!

I haven't heard from the GI yet but we changed her schedule to every 7 weeks and I am assuming that we will just keep that change for now.
 
Glad to hear that the calprotectin numbers are going down. I love that your new GI pulls calpro numbers so frequently!
 
LOL PDX. He is borderline obsessed with them!

Actually he said non evasive monitoring and optimizing drug dosing are the main focuses of his research and practice. He doesn't scope very often. It seems he scopes at dx and then at 18 and maybe again when he releases a patient to adult care. Otherwise he just watches cal pro and other biomarkers. Not the norm but seems to work for him.
 

my little penguin

Moderator
Staff member
What happens woth small boweldisease where fecal cal doesn’t accurately reflect level of damage ???
Not scoping can be very risky
Especially if dx young since cancer risk is much higher
Hence scopes every two years for monitoring after 5-7 years just for cancer alone

Now if his average patient is 15-17 at dx
Then not scoping till 18 isn’t a big deal
But if dx young (less than age 10)
That is a great big deal



have a greater risk for cancer, especially gastrointestinal cancers, both in childhood and later in life.
New analysis of 9405 children revealed that during follow-up through adulthood, 497 people with childhood-onset IBD had first cancers, resulting in a rate of 3.3 first cancers per 1000 person-years. This compares with a rate of 1.5 per 1000 person-years in the general population.

Ola Olén, MD, PhD, a pediatric gastroenterologist and senior researcher at Sachs' Children and Youth Hospital, Stockholm South General Hospital, Sweden, and colleagues found that this high cancer risk has not fallen over time and thus does not appear to be affected by currently available therapies.
The investigators used data from a Swedish nationwide database. The large study allowed the investigators to stratify data for calendar period, thus making it possible for them to comment on changes over time. They used International Classification of Diseases codes recorded prospectively in clinical practice as proxies for disease extent and disease behavior. They report their findings online September 21 in BMJ.
The researchers note that their register did not contain information on smoking, nor did they have detailed information on disease severity, disease extent, or disease behavior.

The new results are similar to those documented in a US study of childhood-onset IBD with ulcerative colitis and another of Crohn's disease with onset before age 22 years.
Risk Factors for Cancer

"Our study confirms reports that primary sclerosing cholangitis is a risk factor for cancer in inflammatory bowel disease," the authors write. "It adds to previous literature in calculating a precise risk estimate in children with inflammatory bowel disease. More than 700 patients with inflammatory bowel disease in our study had a diagnosis of primary sclerosing cholangitis, which corresponds to 7% of patients with inflammatory bowel disease (11% in ulcerative colitis and 3% in Crohn's disease)."

In addition, the investigators found that chronic liver disease, longstanding colitis, and a family history of any cancer in relatives younger than 50 years of age were also strong risk factors for any cancer in patients with childhood-onset IBD. Patients had a higher risk for cancer in the first year of follow-up, likely because of improved detection and surveillance.
Type of Cancer

The investigators calculated that gastrointestinal cancer represented 40% of cancers documented in individuals with childhood-onset IBD. The hazard ratio for gastrointestinal cancers was 18.0 (95% confidence interval [CI], 14.4 - 22.7) on the basis of 202 cancers in their cohort of patients with IBD.
When the researchers examined the risk for lymphoid neoplasms in childhood-onset IBD, they found a 2.7-fold increased risk for lymphoid neoplasms (95% CI, 1.7 - 4.2) in patients with childhood-onset IBD. The relative risks for lymphoma were similar in patients diagnosed with ulcerative colitis and Crohn's disease.
Effect of Treatment

When the investigators stratified the risk for any cancer by medical treatment, they found no clear differences between groups. "We cannot rule out that thiopurines or TNF [tumor necrosis factor] inhibitors increase the risk of cancer, as our study was not big enough to recognise whether drugs are a major risk factor for cancer development in children and young adults," the authors write. "Instead, we suggest that extent and duration of chronic inflammation might be the main driving mechanisms underlying the increased risk of cancer."
In an accompanying editorial, Susan Hutfless, PhD, assistant professor of medicine at Johns Hopkins University in Baltimore, Maryland, agrees that the data are not sufficient to make a conclusion about treatments and cancer risk. "We are unable to determine the relation between cancer risk and use of immunomodulators, biological agents, or their combination owing to incomplete information on exposure to infliximab, as well as insufficient follow-up and power," she explains in the editorial. "The study would require at least five times as many participants (or person years of follow-up) to be powerful enough to detect a doubling of lifetime risk of cancer associated with immunomodulators or biological agents."

From
https://www.medscape.com/viewarticle/886132
 

Maya142

Moderator
Staff member
That actually worries me too - not scoping till 18 isn't the standard of care. If the child was 16 or 17, well, then I'd get it. But like MLP said, small bowel disease can have low FCPs. And Crohn's is sneaky. And with your family history of Crohn's and O's severe IBD, BOTH girls should really be scoped often.

At CHOP they will go 2-3 years if a patient is doing REALLY well. Otherwise they have scopes every year or so. Sometimes every 2.

Once they hit 8 years from diagnosis (and I know T isn't there yet, but not sure about O?), then they scope yearly for colon cancer. M is at 5 years. She will be scoped again this summer to make sure Cimzia is working, since we just re-started it. It will be 2 years from scopes this summer. Her GI won't let us go longer than that.

Does he do MREs for small bowel disease instead of scoping? Because I could understand that.

Plus you HAVE to scope to know they are healing - you may have mucosal healing but ideally you want histological healing too. It's possible now with biologics. But you can't know without doing scopes.
 
Well I really haven't had a detailed discussion about scopes with him. Just said it seems because that is what I heard him saying to another patient in the infusion center and he hasn't mentioned scopes for either girl yet. I will put that on my list of things to discuss in may.

Our last gi didn't scope often either.

I think this guy watches calpro so carefully and has such low thresholds and is so aggressive with dosing that I think he is confident he is treating disease. For example with small bowel disease he likes calpro under 100 otherwise he adjusts therapy. If calpro isn't elevated and anpatient is still symptomatic I would imagine he would scope andnage to see if disease is the cause.

As far as cancer screening goes I do think he may start those at 8 years post dx which O is coming up on. But I will get the total story when I see him next.
 

Maya142

Moderator
Staff member
But T's FCP is 97.7 - that is a little too close to 100, considering she has had on at 250 and one at 160. Will he pull another one at 4 weeks? Because she is basically at 100...

I would definitely discuss scopes with him - the other child may have a completely different history so different treatment. Hard to say without knowing the full story.

I would speak to the doc and ask about histological healing and how we can be sure that is happening without scopes. Even mucosal healing...FCP is great, but it isn't as accurate as actually seeing the mucosa.

Plus, what about things like strictures, fistulae and abscesses? An FCP may not go up with a stricture...you would not know without scopes (if it's in the colon or duodenum) or an MRE. Same with thickening - you could catch it before it becomes a stricture if you do MREs regularly.
 
He hasn't commented on T's last FCP but when we spoke at infusion he said if it was 150 or above we would escalate. I think moving to every 7 weeks from 8 is a bit of an escalation. Also, the FCP is trending downward so maybe he is just waiting for one more FCP to see if it is still going down or if it turns and goes back up or stays stable.

Symptom wise she has been pretty good. No complaints for a while.
 
Just a quick update...T's cal pro was 157 in May and just came back this week at 183. She also has lost 5 pounds. She feels fine but hasn't been eating well. The GI says that all his teen patients lose weight in the summer because they sleep in and miss breakfast and therefore are only eating two meals. For her it is compounded with not being able to eat on game days (nerves).

The plan is to repeat cal pro in one month.

Interesting thing is he said he had hoped it would be within target <150 so it looks like he has adjusted target up from 100.
 

my little penguin

Moderator
Staff member
Is she eating breakfast later ??
My teens sleep in
But stay up later so they are still eating the same if not more

5 lbs is concerning
Given increasing FC
 
Yes but because she eats breakfast late there is no lunch and then she eats dinner. She doesn't stay up late so no chance for an extra meal. She is definitely not eating enough to maintain her weight but is lack of appetite a summer thing or disease thing....that is the question. She is going to try to concentrate on eating and see how it goes. I am glad he is only asking us to wait 4 weeks and then retest. This way he could adjust therapy at the next infusion as she is on an every 7 week schedule.

The 5 pound drop was over 7 weeks.
 
Hmmm mine sleep in late but eat throughout the day. Jack is working so he is eating breakfast 5 days a week but my other son sleeps until noon and doesn't stop eating until he falls asleep.
In the past Jack regardless of sleeping in has made up missed breakfast throughout the day, lack of appetite has correlated to disease activity or other sickness
 

my little penguin

Moderator
Staff member
Yeah that ^^^

Something smells funny
Teenagers usually don’t need to “think to hard” about eating
Something disease wise is off In my “mommy “ opinion

My gastroparesis kiddo is eating all day
He may not eat a lot at one setting
And increased his formula intake (due to nausea )
But calorie intake is through the roof
😃 almost like a normal teenage boy

When flaring he picks at food
And we have to bug him to eat
 

Maya142

Moderator
Staff member
My kiddos had to eat breakfast because they take NSAIDs in the morning and evening. But over the summer, they wouldn't eat much in the morning but would eat later in the day. Evening/night snacks were very common - like post-dinner snacks because they'd be up late.

I would make an effort to increase her calories and if that doesn't work, maybe investigate more and see if her IBD is flaring.
 
T's follow up cal-pro came back at 195. Weight is down only another few pounds but holding steady.

GI isn't changing plan (7.5mg/kg every 7 weeks). Not taking cal-pro or blood labs at next infusion which is Wednesday. Next labs (blood and fecal) will be 10/16 and if cal-to climbs more then we will discuss increase in dose or shortening interval.
 
Hey y'all.

T's calpro came back at 97. 97 with no intervention what so ever. Not worth of dancing poop but enough for me to call the dogs off.

So there you have it. Calpro could be highly variable and the GI was right not to freak and run. Imagine that. Their fancy pants medical schooling and interning and residencies means something.
 
That's a good number!

I wish someone would do a study where they test a bunch of people's calprotectin every day for like 2 months, so we would know what the normal variability is for that test...

How are her other symptoms lately? Hope that she is doing well.
 
Wow! Good point PDX. I have seen older studies on time of day variability and maybe some over time but I don't think the study size were large enough to tell us anything really.

She is doing very well. Her weight has gone down another 3 pounds but I put that down to a switch over to vegan diet. She is eating way more food but it just isn't calorie dense. We are adding lots of nuts to keep those calories up.
 
Dropped vegan diet weeks ago. Eating lots of very fattening food. Down another 2 pounds. Just ugh! Waiting for latest Calpro. Off and on nausea and "funny tummy" but otherwise fine. Pain is her tell tale symptom and none to report.
 
You can probably guess what I'm going to say... I would want scopes and imaging at this point. Kids' symptoms can change over the years, so I would not disregard nausea and weight loss just because she isn't in pain.

If not imaging, I might push for a Remicade dose increase--is she still at 7.5 mg/kg every 7 weeks? Does she have more symptoms towards the end of the cycle?
 

Maya142

Moderator
Staff member
Yes, sorry, 11 lbs is a LOT. You know the road we went down with M - it was just a few pounds here and there, until finally it was 15 lbs and that caught her GI's attention.

Can she drink two Boosts a day if she is not eating enough? That is what our GI and dietician wanted to do when M had lost a lot of weight - add formula if she could not eat enough. M was unable to drink enough, as you know, but since T did EEN, maybe she can.

And yes, while I would certainly try to get her weight up with food and formula, I would also want testing - an MRE and scopes. Given her FCP shows inflammation, it could be causing the weight loss - interfering with absorption of food, for example.

Please, please catch it before it goes too downhill. M was SO sick when she was severely underweight. She is lucky she does not have permanent heart damage.
 
I am sorry to hear this Crohnsinct. H couldn't gain on Vegan but she did put weight on pretty quickly after we liberalized her diet.

I hope the answers are more med adjustment and less new treatment.
 
MLP - two for the price of one. LO!

cal pro back: 338

Appointment for both girls next Friday. Should be fun.

PDX - right! She is at 7.5 every 7 weeks. Plenty of room to raise dose or shorten interval. Pretty sure that is what he will want to do.
 
Update:

Appointment today. T definitely down 11 pounds. At 50th percentile. GI says she is a 70th percentile kid (lots of muscle due to softball/catcher). Given the cal pro and TI disease he suspects inflammation is the cause and not poor eating/disordered eating.

I was mistaken. Her old dose was 5mg/kg every 7 weeks. We are increasing to 7.5 every 5.

Given there has been some nausea and wonky stomach (very little but comes and goes), weight loss and increased cal pro if she isn't doing much better (gaining weight, lower cal pro and no nausea) he will do a pill cam.

Going back in mid March but she is to email him updates (weight and how she is feeling) until then.
 

my little penguin

Moderator
Staff member
Hugs
Why just pillcam
Disease in kids is known to change type and location as they age
They KNOW THIS which is why you need SCOPES /MRE AND PILLCAM
Not just one because at one point they only had disease in xyz location
🤬
 
MLP: My guess is no colonic symptoms. I get what you are saying about disease changing over the years but all her symptoms right now reflect upper tract disease.

Pilgrim: I think most GI's use one or the other and it just depends on GI's experience and preference as to which is more accurate or usable.
 

Maya142

Moderator
Staff member
Our GI said that typically they do an MRE or a pillcam to check the small bowel, but sometimes they do both. My daughter has had both at different times.

I hope the increased dose of Remicade helps T!
 
T's cal pro went down to 256 the first infusion after our December visit and GI said since it was going down we were going back to old schedule of 7 weeks but we kept 4 vials. Next infusion at 8 week schedule was last week and cal pro 275. She also an appointment on Friday (with O). I will let you know what he decides. I am hoping a schedule tweak. She still hasn't gained ay weight but she stopped losing so at least there is that. She also feels fine.
 
Well GI says since T doesn't have any symptoms and gained 2 pounds he is willing to sit on the 275 cal pro and see how things go. Still at 7.5mg/kg every 7 weeks. If she consistently goes above 300 or 400 then maybe we will make a move.
 

my little penguin

Moderator
Staff member
Seriously ...
What happened to truly monitoring
Putting some arbitrary number as a line in the sand
It is only one test of many that should be done regularly to make sure things are ok
Weight loss is a big red flag

Does she reliably report symptoms?
Teenage years are tough
They don’t want to be sick so are less likely to self report symptoms
More likely to just say “fine”
 
Hey y'all,

With all the O drama, it appears I haven't updated you on steady as she goes T.

Not a lot going on. As of June 7th, her cal pro is 462. No word from GI. I guess I could ask him but honestly I need him focused elsewhere right now.

She has never "reliably" reported symptoms but with everything that is going on with her sister now I think she gets it. I spent some quality time with her last night and she promises she feels fine.

We have an appointment with the GI in September. Next Cal pro in August.

That's it folks. Nice and simple.
 
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