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Parent of newly diagnosed kid

Hi

Thought I'd introduce myself. My 12 year old son has been diagnosed with Crohn's 6-8 weeks ago. Jude also has type 1 diabetes which he was diagnosed with at 7 years old.

J tried EEN but couldn't keep it up as he seemed to be getting worse and losing weight on it. J stopped 8 days in (although he did seem to improve for a week after he went back on solids).

J started Humira 3.5 weeks ago. Unfortunately, he has continued to get worse. His number of BM's is increasing and he is up each night now going to the toilet. Life now is him getting out of bed and lying on the couch for the entire day before I carry him up to bed. He is extremely weak and is only managing 1 or 2 small meals a day. He is down from 43 kilos to 33 kilos.

I'm based in Ireland, it mentioned a specific forum on gutsykids,ie for parents in Ireland on here but I can't find it... not sure if there are others here from Ireland.

Going through the toughest bit here which is watching J get worse and waiting for a biologic to work with no guarantees. It's excruciating as I am sure y'all know.

Oh, for extra colour, I have Crohn's myself, diagnosed at 12 as well.
 

my little penguin

Moderator
Staff member
Tagging @polly13
Second thought given he is still losing weight could you add a few shakes with food
Depending on where his damage is in the intestine depends on his ability to absorb food
In the US there is glucerna for folks with diabetes who want to drink shakes without other health issues

most shakes are polymeric (kids boost , Pediasure)
These taste the best but are harder to digest and absorb so only slightly better than food

peptamen jr /modulen are semi elemental meaning they are chains that are broken down so easier to absorb but taste ok. But not the best sone kids have a harder time drinking them

elemental would be neocate jr /elecare /neocate splash these are pure amino acid based-what the body breaks food into so you only need a few inches of healthy intestine to absorb these.
They are the easiest to absorb and let the body rest done since they produce less waste
As you can imagine these taste the worst and most kids need an ng tube to use them
Ds started neocate jr chocolate at age 12 after being on peptamen jr for 4 years .
It was hard for him to drink but he decided it was worth drinking over not having a tube .

definitely update your childs Gi if he is still losing weight and not able to move much

hugs 🤗
 
Thanks for the reply @my little penguin ... We are trying to get J to take at least 2 shakes a day from today. He has been refusing since he stopped EEN but I think he is desperate to feel better than he does right now. He's taking fortisip and chocolate is the only flavour he will attempt.

He has started sleeping during the day a bit as well which might help with his general condition. I've spoken to the hospital about his general health and they don't seem to be that interested, to be honest. Maybe because waiting for humira is the only game in town ¯\_(ツ)_/¯. It's kinda frustrating.

Another thing that happened today was he complained of pain in his foot. There is visible swelling and redness on the metatarsal. Hopefully not arthritis.
 

my little penguin

Moderator
Staff member
Take pictures of the foot and let his gp know -maybe Rheumo if you can get one
Ds has arthritis as part of his crohns
But also has had cellulitis infection in his foot twice while on humira
And had vasculitus on his foot prior to remicade
All were a red swollen foot ....

it tough when they don’t want to drink since they feel so bad
Forstips would be similar to kids boost so very polymeric and only slightly easier to absorb than solid food
The other kinds might be easier on his gut and let him feel better
I would ask and see if you could get samples to try

poor kiddo

colder is better
Lots of ice
Lid
And straw to avoid taste buds
Do not freeze since that eliminates the nutrition
We bribed Ds to drink each time
It worked until he was used to it
A day at a time
 

my little penguin

Moderator
Staff member



Some resources
 
Hi,
I am from the UK and have a daughter 14 diagnosed at 12 with crohns. My daughter is also on humira, has been for two years now. She was started on a course of steroids which seem to kick in straight away. Then she was put on humira and has had no symptoms of crohns since being diagnosed. I am telling you this to give you hope with the humira. I know each child"s disease is different. I am sorry your son is having such a tough time I can really hear your heartache. My daughter was also on two fortisips a day after diagnosis but she was on forisip juice. Those worked just as well for weight gain so maybe your son could try those. Does your GI team have a dietitian? You could really do with having a chat with them unless you already have. Sometimes you just have to keep on at them.
Have you heard of the children's charity Cicra? If not please take a look it is a fantastic charity for children with IBD. They have their own family support worker who can offer you lots of advice.

I really hope your son soon picks up! It's still very early days for the humira to kick in. I know that doesn't help with how your son is doing now but hold on in there.

Please chat to us more for support. I remember those very early days and it is terrifying, especially for you with your son being so poorly. I was in a bad place when my daughter was diagnosed. However things will get better and start to settle down.
 

crohnsinct

Well-known member
Glad to see you joined the parents forum. You may get a lot more responses over here. Polly comes in and out so hopefully she will see your post soon.

I am really concerned that the IBD office is not concerned with that weight loss and super mad for you! Fast weight loss is known to be pro inflammatory and he will get himself into a vicious cycle. My daughter was in that cycle last year and had to end up on PTN for months.

Boost has fruit juices that are a form of EEN so maybe if you can find those over there and it works o.k. with his diabetes you can try that. Is there any food no matter how junky etc that he really likes? When my daughter was in the hospital last year, they told if it McDonald's fries was all she would eat to go ahead and feed it to her. Priority number 1 is get the weight back on and then maybe he will gain weight and turn things around.

Other things we use to gain weight:

Avocado with every meal
Olive oil all over cooked veggies
Butter on veggies
Nut butters
SMOOTHIES - with added yogurt, nut butters, malt etc.

I would call the GI and ask to speak with a registered dietician. You are balancing two needs between the IBD, weight gain and Diabetes.

Did you happen to ask the office about Entocort? They just increased O's Entocort and she stopped bleeding. Still all liquid about 7 times a day so not getting better yet. First maintenance dose this Friday.

Hugs Mama, you are doing a great job!
 

crohnsinct

Well-known member
Here is another thought....I would ask about having them check his Humira levels. kids notoriously metabolize these drugs faster than adults AND active inflammation sops up the drug like crazy. So while the kids are actively inflamed they need A LOT more drug. AS they move into deep remission then we can entertain the idea of decreasing dosage. I think he is already on the adult dose of 40mg every two weeks but maybe before his next shot they can pull levels and antibodies and see what those are and if there is any adjustments that can be made.

I forget, did you discuss Entocort as a bridge therapy? O has increased her Entocort back to 9mg daily and her bleeding has stopped. She is still going 7-10 times a day and all liquid but at least the bleeding stopped. She had her appointment with the GI and he said, "Their (meaning Abbvie) data says that if it isn't working by 6 weeks, it probably won't work". He decided to let O go ahead and take her first 40mg dose, not expecting much. GI's know from experience not to give up at the 6 week mark as it sometimes just takes people longer to respond. So in a month we are going to reassess. IDK if thijsinfo helps you other than to know we are traveling this road right a long side you.

How is he doing today?
 
Hey everyone, great advice there. Much appreciated.

Been a stressful few days. Poor J has had a cough and he started running a fever. He woke up on Thursday hallucinating, talking to ppl who weren't in the room. Myself and my wife were freaked out as you could imagine. Unfortunately, as the symptoms were similar to COVID we were advised not to visit the ED but to get tested. Results took 24 hours which wasn't bad and were negative as expected.

What a nightmare week 😲. Plan is for humira 3 on Monday, another 80mg. 4 weeks now so we need a break. He's in awful pain and isn't eating as a result.

Thanks for the food advice, went out today and bought a load of high sugar stuff to see if he'll eat it. The diabetes is a problem for another day. Smoothies etc.

On the entocort, I think any steroid would have a similar effect and J has pan colitis. I'll suggest though, for sure.
 
@crohnsinct just saw your post. Gonna ask them to check levels. I sent them some data on j's activity during the week and they seemed to see some control coming into play. I don't see it personally. I can't remember him being worse.

Also, stopping eating can effect number of poos. Maybe they were seeing that without context.
 

my little penguin

Moderator
Staff member
Belly pain
Heating pads or the skiing “hot “ packs on the belly
Warm bath

eating when they hurt so bad is harder
We just went with what every they really liked
Bland stuff sometimes sits better
Broth with mushy rice /shredded boiled chicken
Any veggies well cooked to mush
Potato soap (potatoes boiled , green onions , zucchini veggie broth ) salt and any seasoning he likes
Puree
Mine craved salt so Low fat chips or crackers
Small meals
Otherwise you have to wait for the intestine to heal
It’s so hard for them
 

crohnsinct

Well-known member
Fevers could be a sign of major inflammation going on. He has lost 10 kilos?! In how long? That is a pretty big weight loss for a child. Number of BM’s are getting worse?! And they are not concerned? Sounds like maybe it is time for a new GI.

is pain a new symptom for him? Is it abdo pain or other. For abdo pain we also doing heating pad or one of those rice filled bags that you can pop in the microwave.

O also has pancolitis and Entocort works rather well for it. Also it isn’t as systemically absorbed as prednisone. GI’s use it when they want the steroid effect without the steroid side effects. That’s not to say it is totally harmless but very little of it is absorbed.

When does he get his next round of labs? Does he get fecal cal protection testing? I am really curious to see if his labs are improving. If so, it is possible that he may have a functional overlay to his IBD, something such as IBS, SIBO, Gastroparesis etc. Many IBD patients do. These disorders are every bit as awful as IBD and can cause great discomfort and weight loss. However, we know he has IBD and it is still early in the game so without seeing lab marker improvement I would think this is IBD. But just in case, I might address any stress he might be going through that might also be having a gastric effect on him. These are difficult times for everyone then add to it a diagnosis of a chronic illness, the stress of EEN and the unknown, he could be having a difficult time processing it all. Does your GI have a psychologist on staff? Many IBD docs have one associated with their practice, especially pediatric GI’s.

Hugs! So sorry you are all having to go through this.
 

my little penguin

Moderator
Staff member
Your kiddos pain and weight loss is not ibs
He was dx with crohns recently
Is flaring and humira needs time to work period
Additionally the normal path forward is to give steriods or een to calm down the inflammation first while giving biologics so it takes less time to work
This is normally 3-4 months
Without steriods or een it will take longer

inflammation hurts
It causes weight loss since the small intestine can not absorb properly
None of these things are ibs
They are classic ibd /crohns
 

Maya142

Moderator
Staff member
How is your kiddo doing now, @njprrogers? As mentioned above, it's sometimes hard to tease out what are IBD symptoms and what are due to other commonly occurring GI conditions. However, since your child has only had 3 doses of Humira, my guess is his symptoms are likely inflammatory. The weight loss is concerning - 10 kg is a lot for a kid (or even an adult!). Is there any way you can convince him to have shakes? Maybe something more broken down, like Modulen? In the US, the equivalent is Peptamen Jr. or Pediasure Peptide. I'm not sure what is available in Ireland, but I know some of our British members have had success with Modulen.

My kiddo became severely malnourished due to a combination of Crohn's and a functional abdominal issue - Gastroparesis (delayed gastric emptying). In her case, she was only diagnosed with the Gastroparesis because her Crohn's was well-controlled at the time (based on scopes/imaging) so we knew her inability to eat and nausea/vomiting were caused by something else. She became very, very sick due to the amount of weight she lost - she ended up requiring a feeding tube to prevent further weight loss and to gain weight. She never did EEN - not 100% formula. But she did do 85% EN - so 85% formula and 15% food. Some kids with Crohn's/IBD are able to do 100% formula without any issues. Others find that difficult, and studies have shown that 80% formula, 20% food works nearly as well as 100% formula.

While your kiddo is likely dealing with pain and weight loss due to the IBD and not necessarily a secondary condition (though many kids do develop secondary functional issues like IBS or Gastroparesis), he would still probably feel a whole lot better if he was getting proper nutrition. My daughter went from being stuck in bed all day due to weakness, exhaustion and malnutrition - at her lowest, she was roughly 80 lbs and 5'2 - to being a normal teenager, in a matter of weeks. She had lost almost 30 lbs (~13 kg) and i don't think she understood how serious extreme weight loss could be - she resisted the feeding tube until finally she developed an arrhythmia from weight loss, was hospitalized 3 separate times due to her weight and when she was finally told her organs would start shutting down. She developed electrolyte imbalances that lasted for month because her body was so unused to food by that point.

She couldn't believe how much better she felt once she was getting 2400 calories per day - vs. the 500 calories per day she had been getting.

A feeding tube sounds scarier than it is. Generally an NG tube is used, which is placed through the nose into the stomach. They used a tiny thin tube - like a strand of spaghetti. She was taught to place the tube every night and would do the feed (hooked up to a pump and bag of formula) overnight. Then in the morning, she'd pull out the tube and go to school. No one at school even had to know! Some kids prefer placing the tube by themselves daily, like my daughter did, while others choose to leave it in and it's then changed once a month usually. My daughter was VERY against using a feeding tube and while the first few nights were tough and her nose and throat were sore, after that, it was shockingly easy. She got so good at inserting it that she could do it in 10 seconds. After switching to the tube, she soon declared she would NEVER drink formula again and the tube was MUCH easier ;).

I don't know if a tube has been brought up as an option but thought I would mention it. It's honestly not as scary or as intimidating as it sounds, and supplemental EN, even say 60% formula and 40% food, might really help as a "bridge" until Humira kicks in. It should help with pain relief too - it's a lot easier for an inflamed gut to digest formula and to absorb nutrients from it (and he needs those nutrients to heal!) vs. digesting regular food.
 
Thanks for all that info. Very useful to know. The more we have in the armoury, the better.

So.... There is some good news. We are starting to see some improvement. We've added salofalk or mesalamine foam enemas at night and we may be glimpsing a start for humira kicking in.

There is a little more blood but poos are looking slightly more formed as well.

J has started to regain some appetite. For the last two days he has had 3 small meals a day and he look much brighter. He had no fever last night and got closest to sleeping through in weeks only getting up at 6.30am to use the bathroom.

Fingers and toes crossed that we are turning a corner!

@crohnsinct are you seeing any reaction yet?
 

crohnsinct

Well-known member
Oh yay! This makes me so happy! I can't believe we didn't suggest rectal therapies...duh! O has tried them and the only ones that worked were steroid suppositories and for some ridiculous reason our insurance won't cover them. Weird that he is seeing more blood but our doc says sometimes that happens as the new healed lining forces the old diseased lining to slough off. Let's hope this is what is happening here.

Hopefully as he continues to eat he will improve more and more.

O had her Entyvio infusion yesterday. Things are the same old. She started bleeding a bit again but we think that's more to do with coming to the end of her Entyvio interval. Frequency is same and everything is still all liquid. She had labs including fecal calprotectin yesterday so we will have more data soon.
 

my little penguin

Moderator
Staff member
Woohoo!!! For minor improvement
Same here uceris foam works great for ds
Per endocrinologist next to no system absorbtion so might be worth asking about
Fingers crossed he slowly improves
 
Hi there and so sorry to hear about jude, but glad to read your last post that he is starting to do better. We are in Ireland too - Tipperary. My daughter Lucy who is 11 was diagnosed with crohns at two so we are well used to Crumlin and how the Gi department operates. Firstly I would call or email the ibd nurses any time you are worried, they are your first port of call and they are very good and responsive and very experienced, especially k. Also if there are worrying symptoms they will see you in clinic that week or on the day ward or they might ask to get bloods done with gp and based on results they may see you. You don't always have to wait until next clinic appointment. This may not be too easy at the moment with covid restrictions. I'm not sure how good your gp is with paediatric crohns but they are often a good first of call if you are unsure yourself as to whether you need to be seen.......just don't take any meds without checking with crumlin first. I
The improvement could be the humira kicking in and sometimes they will add methotrexate (Lucy was on that successfully for about 5 years). They are very slow to give steroids at all and are only a last resort in my experience. EEN is magic if the child can tolerate it - Lucy had great difficulty with it and we had great difficulty finding one that she found palatable she finally settled on altrapan compact strawberry flavour , it comes in chocolate too I think, it is a smaller bottle so less to Drink with the same nutritional value , might be worth a try definitely worked here after trying lots of others. It's on the approved list so your gp can script it for you. They also had juices that they recommended, didn't work for Lucy but also might be worth a try.
Hope things continue to improve for you.
Polly
 
Hi all

Just to give you an update on J... He has had a positive week. After his last dose of humira, we started to see a big shift in his general health. Mostly his appetite, which has exploded. He has had much more energy as well. We even had a couple of bike rides this week.

He was still up 2 or 3 times a night so he was prescribed prednisolone enemas. He has had 2 now and it has dramatically reduced the number of BMS. Probably from 8 to 10 down to 3 or 4.

We are feeling pretty hopeful now and we have first maintenance dose of humira on Monday.

Thanks @polly13, agree on all, also k at crumlin is great, you're right!
 

crohnsinct

Well-known member
This is great! The rectal therapies are awesome when they work. Hopefully when humira reaches its peak and is able to take over you can taper those off.
Roll on remission!
 
Just giving an update on J. So today is week 9 since the first dose of humira.

J had 3 good weeks after taking the prednisolone enemas. He stopped 9 or 10 days ago. Unfortunately, he has started to slip back over the last three days. Just chatted to the IBD nurse and they feel at the hospital that he is not getting the response from humira they would expect.

They are going to move him to weekly before ruling it out completely. Back on the pred enemas tonight so hopefully the symptoms will be under control and quality of life will be ok.

Stressful times!
 
Hopefully the weekly doses of Humira will set him straight again. It's always a little tricky getting the right dose of medication, but once that is achieved, generally you can expect to get a good period of time with good results.
 

my little penguin

Moderator
Staff member
Hugs
Always tricky when starting a new med and figuring out whether to wait longer or jump ship
FWIW we wanted to jump ship on humira st first then it lasted over 5 years
And same with Stelara (which took close to 11 months to get to a normal state )
 

crohnsinct

Well-known member
Living parallel lives again!

I feel your pain and frustration.

how is his pain and eating?

When were his last labs?

Have they done Humira levels testing?
 
He is doing ok on food and pain... really it is just the last couple of days after a week off the enemas that blood has come back and the waking at night has started again. He has gone from going a couple of times a day to 6-8. His general health is not too bad but he is going the wrong direction.

He had bloods done last week and they didn't look too bad... humira levels were taken at the same time but will not be back for a couple of weeks (COVID :-( )

I have restarted him on Budneofalk enemas so hopefully we will get something from them. First weekly humira today, week 9. Fingers crossed!
 
Would be interested to hear from anyone who didn't think humira would work out for them at 9 weeks but ended up having some success...
 

crohnsinct

Well-known member
I am glad they got the levels and antibodies done. Without that you are shooting in the dark.

I forget, was there any discussion about adding methotrexate?

I have heard plenty of stories of Humira taking awhile. Our GI said that abbvie’s literature says by 6 weeks you will know but his experience is more like 12-16.

The distal colon is hard to get to behave. But it sounds like Humira is helping everywhere else so hopefully it just needs time.
 
I would give weekly Humira a good try possibly adding in Methotrexate before giving up. We have had a lot of success with both dose escalation and adding the immune suppressant over the years. Our daughter started Humira age 4 and still having success at age 9. Right now she takes 40mg weekly with a weekly 15mg injection of Methotrexate.
 
@Pilgrim thanks for the tip... Can you recall how long it took to see any improvement when your daughter started?

We might end up switching to infliximab soon but want to make sure that the humira is not working...
 
She usually shows improvement within 4-6 weeks after starting, or a dose escalation, or a med addition (like MTX). My thought is that you may not have seen a great improvement on a biweekly dose. In our experience, our daughter needed to be weekly by about age 6. It's a weight thing sometimes for dosing but also can be that the drug is metabolized more rapidly in some cases.

Sometimes the disease needs a smackdown by a round of steroids to get things momentarily under control enough for the biologic (Humira) to take hold.
 
I will add we have considered moving to Inflixamab. What stops us from doing that is the desire to completely run out of possibilities on the first biologic so that we don't run through too many drug options too quickly. Lifelong disease....
 

my little penguin

Moderator
Staff member
Ds started humira at age 9 and was on the kids dose (20 mg ) every two weeks .
After three months he moved to 40 mg every two weeks but this took 3 months to be effective
Later he moved up to weekly
He was on humira over 5 years .

One thing we learned
Anti tnf drugs are very similar in response
Ds started on remicade had a good response but ended up with an allergic reaction. So switched to humira
After 5 years he lost response to humira

At that point we were told anti tnf would not work anymore since his immune system had “bathed “ in the type of drug for too long so switching to another anti tnf was not useful.

The good news is there are slot of new drugs for kids out there .
There are also new drugs in phase three trials so more options

Ds has been on Stelara (il-12/iL-23) for almost 3 years and doing well on it .

There are many new IL-23 drugs .

The goal is not to give up too soon on a drug
But also not to take all the risk of a drug with no benefit .
Every kiddo is different

Hope you see a good response soon to the higher dose
 

crohnsinct

Well-known member
Ahhhh silly me, I had read your first post and saw tried Remicade and Entyvio and no joy and thought that was him but now I realize that was you. Hmmm, could be another drug might work better for him. If all his disease is colonic Entyvio is sometimes a viable option.

It is a delicate balancing act, trying to give the current drug all the chance to work but not risk disease damage while waiting. That is probably the thing that frustrates me the most. Then when you add multiple therapies, trying to flesh out what is actually helping.
 

my little penguin

Moderator
Staff member
One more thing
Since your child is 12 - most docs are more willing to try drugs approved for adults on them
At least that was what we were told at the time
12 is the magic age
Under 12 they only want to use biologics approved for kids so your much more limited on options


Ds was 13 when He started Stelara and it’s only approved for adult crohns (but has since been approved for adolescence with PsA.

Thankfully Ds will be 17 later this year (which is still weird considering he was 7 when this started ) so a lot more options drug wise if needed at 18
 
J had his third weekly dose of Humira yesterday.

Unfortunately, he is now going 8-10 times a day and seems to be going backwards. He was up at 3am last night as well for the first time in a whlie. The pred enema's don't seem to be giving the same level of control. He had a good 3 week period but that seems like a long time ago now.

Still waiting for the levels back from his bloods two weeks ago. Can't move off Humira without it but I am anxious now that his experience with biologics will be similar to mine i.e. failure on Humira, Infliximab and Vedolimuzab. Not sure what his options are without those.

Will be interesting to see if he is just a non responder or whether the issue is with antibodies.
 

my little penguin

Moderator
Staff member
There is also Stelera
Different mechanism than entyvio
Not the best For colonic disease but if it works ....

mother thing is biologics often need systemic steroids to reduce inflammation enough so they can work fully
I know woth Covid oral pred is less than ideal
But so is inflammation everywhere both are risk factors

Options we have seen
Adding methotrexate
Adding oral pred
Adding full formula only

some kids need all three added to the biologic until the inflammation is reduced then things can be slowly backed down
 

crohnsinct

Well-known member
Oh no! I am so sorry this is happening. But totally what MLP said. O was exactly the same on Remicade when first diagnosed. We were at it for 4 months. Every time we tapered steroids she got bad. Our theory was the Remicade just couldn’t induce remission. Steroids are great at quelling inflammation but not mucosal healing. So we had a choice add methotrexate or EEN. She did an 8 week course of EEN. Healed up and Remicade was able to take over from there. We did have to eventually add methotrexate a year or two after but did so for antibodies.

The enemas didn’t work for O but for some reason suppositories did. Then they stopped working and now foam seems to be sort of helping. Still not a great long term strategy but worth considering.

Not saying these are it but before you leave Humira you may want to get stool studies done and check for c diff. Or perhaps a Covid test (diarrhea is a symptom) also as we have learned CMV is also a culprit but I think that goes along with low WBC’s.

But honestly it just sounds like Humira isn’t cutting it or antibodies.

Don’t lose hope. I know your experience was rough but there are plenty of kids on here who don’t respond to their first biologics but do to their second or even third. Or some weird combo of things. When it comes to weird combos O has done it all. Speaking of which she is now on Cipro and Flagyl. I thought the GI was cuckoo but have been reading about it and thus combo is quite successful with colonic disease. It rebalanced the bacteria. Maybe read up on it and you can try a 2-3 week course added in?


Remind me does he have any small bowel disease or is it primarily the colon? Is he bleeding again? Poor little guy. In UC cyclosporine is used pretty successfully and our doc mentioned it because O’s Crohn’s is very UC like.

I am on my phone and can’t see your sig What did you find that finally worked for you?
 
There is small early research that the CDED diet alongside or instead of EEN can be helpful, wondering if a few weeks of that would buy you time to see if the Humira settles things down, but I see from early post your poor boy has diabetes too so I guess you would need to get advice on whether it would be suitable.
I have got something in the back of my mind about the anti-map therapy brigade talking about a link with diabetes - probably read it on the human para website - a long shot but possibly worth looking in to. As I recall the first hurdle is seeing if the patient has got map which involves getting a blood sample to a laboratory in New Zealand so we are not talking straight forward.
Vitamin d3 drops and probiotics are also possibly mildly helpful add ons that may be worth discussing with the doctors?
I hope things get better for your boy soon
 

crohnsinct

Well-known member
Good points/ideas Delta.

We tried CDED. There is a lot of encouraging news coming out of that camp and our GI is pretty hyped. up about it. The problem is it is hard to find a GI/dietician well versed in the particulars of the diet. There are some published guidelines that people have gotten from the study materials but not enough to actually try it on your own.

There is plenty about the SCD and it actually is a very good diet for diabetes. My family is on it for O and my husband has diabetes and he is doing great on it.

Fair warning though, the colon doesn't respond to diet as well as the small bowel but that doesn't mean it doesn't respond at all and isn't worth a try. Generally speaking if you had good success with EEN, then you are likely to have better success with diet.

I know you follow O's thread and while I am not ready to make any major announcement, the Cipro/Flagyl seems to be doing "something" for her. She is no longer bleeding, has a few less BM's per day, stopped the liquid BM's and a few other things. She occasionally has these good blips so I am holding my enthusiasm for a few more days. But I am guessing bacterial load has a lot to do with O's disease, whether it is SIBO or something else.
 
It is so nice to hear something positive about O, I will keep praying for her. If the antibiotics help I wonder about longer term gentler stuff like olive leaf extract/ peppermint oil/ probiotics (my consultant recommends vivomixx but I’m an adult) to try and help with bacteria balance but there isn’t much research that I can see. I’ll keep an eye on your thread and hope for good news!
 
That is positive on O.. I hope that the improvement continues.

J should get his levels back today... that will tell us something of where he was 2 weeks ago with Humira.

He is flaring up again unfortunately... been feeling poorly the last couple of days and he needed to go 14 times yesterday. He has been up 7 times since 4am as well.

We are doing stool tests for infection / inflammatory markers today. We might bring him in for blood tests as well.
 

Maya142

Moderator
Staff member
My kiddo took forever to respond to Humira. She was on it biweekly, then every 10 days and finally we made it weekly. That by itself still wasn't enough but once we added MTX, she started getting better. it took 5-6 months AFTER going to weekly and adding MTX before the combination worked for her. But when it worked, it was like magic!
 
Thanks for all the responses...

So J got admitted to hospital 2 days ago. The levels show humira available and no antibodies as yet.

The docs have decided he needs IV steroids and we are managing more or less to keep his blood sugars under control.

We just got to hope that the steroids kick in and knock out the inflammation and that the humira can keep it under control if and when it does. He is much brighter today after getting no sleep the night before (hospital is a busy place) so we are optimistic.

Fingers crossed once again!
 
J started IV steroids on Wednesday night and he had a really bad night last night from midnight on. His blood sugar went low and he had apple juice and a couple of candies... This led to him being on the toilet pretty constantly during the night.

I am despairing here that the steroids are not working and that he is actually getting worse.

How long ususally for IV steroids to knock out a flare?
 
Let's hope Infliximab works. When it does work, it works faster than the other biologics. My son actually felt better after his first infusion. Glad there's a plan of action. So sorry that your boy is going through this, and that you are also going through this.
 

crohnsinct

Well-known member
How did I not get alerts to the updates...darn computer!

I am so so sorry you all are going through this. When O was in really bad shape last year it took a LONG time for steroids to make a dent. Unfortunately most GI's don't like to wait for the steroids to kick in and by a certain time they start discussing surgery but with pediatric GI's I think they try a few more things first. All this to say that even IV steroids could take a while especially if there is considerable inflammation so don't lose hope. Do you know what dose he is on? Is he on prednisolone?

Have they done c diff testing?

Any talk about EEN? Perhaps now that you are inpatient the team there could place the tube and you can try different formulas in a controlled environment?

Remicade does start working faster and actually has a higher success rate and more flexible dosing than Humor so fingers crossed it helps.
 
How is your little boy doing? I hope things have started to improve? Infliximab can really work fast. One dose dropped my crp (blood inflammation levels) from 90 to 2.
I wondered if there was any chance of a dietitian seeing him as an inpatient to figure out a good Crohn’s/ diabetes diet, all I am thinking is when my son had constant diarrhoea I was told to avoid apple juice but obviously in Js case need to also think about fast sugar when needed.
I hope things are getting better xx
 
Hi all... Thanks for the responses.

So we've been in hospital for a week now with J. He is going 20 odd times a day and losing weight. He is tapering from IV steroids as they were deemed not to be working.

Things have moved very quickly and we are not yet seeing a lift from the remicade. Unfortunately, there is a decision to be made sooner rather than later around surgery and removing the colon.

He'll get another dose of remicade on Monday to try to increase levels.

Anybody know how long it would typically take to react to remicade if it was going to work?

Initially his disease presented as ulcerative colitis but with my history they were reluctant to pin it to that.. i was diagnosed with uc at 12 and it was changed to Crohn's 20 years later after fistulae. I think the colectomy would be based on a UC diagnosis.

They want to scope soon to rule out megacolon but he isn't in great shape for that.

Just playing a waiting game with the remicade now but they won't wait beyond next week as they fear doing the surgery in an acute situation.
 

my little penguin

Moderator
Staff member
Remicade takes 6 weeks to be effective on average
Longer if high inflammation
Typically they run steriods and remicade at the same time not one or the other

is he in tpn ? Or formula only through a Gi tube ?
I know with his diabetes things are much more complex
I am sorry he hasn’t improved yet abd they are talking surgery

I hope things calm down quickly for him
and you
Hugs 🤗
 

crohnsinct

Well-known member
Oh no! I am so sorry. Geez! We really are running parallel lives and I wish we didn't have the company. Few thoughts:

If they are thinking UC I would ask about cyclosporine. They can give that by IV. They use that a lot with steroid resistant UC patients in an acute flare while inpatient. Also, Tofacitinib is showing good results as a rescue along with the cyclosporine. Some docs are using Tofa and Entyvio at the same time and when Entyvio has enough time decreasing the Tofa.

If he can't use steroids how about Tacrolimus? They gave that to O as a bridge therapy because she had been on steroids for too long. As a matter of fact there was a young girl on here years ago (Izzi...their user name was Izzismom...I think). She was dx'd with UC and had tried everything in the book. AS a last ditch effort they tried Tacro and it worked. It was presented as a short term solution but I think she actually ended up on it for a while. Then Entyvio came along and she went on that and has been doing well.

Also, O has tried various antibiotic therapy. First was vancomycin alone. When that didn't work she tried an antibiotic cocktail. Now she is just on Cipro and Flagyl (along with her long list of other drugs) and it seems to be helping.

Any discussion about complete bowel rest with TPN? We did that with O last year when she was inpatient most of the summer.

Sorry to throw a lot at you. Just trying to give you as many things to ask about as possible not questioning your parenting ability because you obviously are totally rocking this!

WE will say ap prayer that the team comes up with a strategy and that it works soon for your little guy!
 
So sorry this is happening. My son felt the effects of Remicade immediately but everyone is different, and although it is the biologic that has the quickest results, it may take a few infusions to see some relief. So let's hope that this next one does something. Hugs.
 
J is still on 20 mg of pred. And the hourly over night poos have changed to him getting a 3 to 4 hour stretch of sleep so we are hopeful.

He is still going at least hourly during the day but night time feels like there is improvement.

I think they are reluctant to throw cyclosporine into the mix until hey look at the bowel to make sure it's salvageable.

They were planning a scope this week but we agree that it would be unlikely to go far whilst being tough on J. Looks like we are going to sit tight and wait for infliximab part 2 on Monday. I am hoping the accelerated regime gives us some results.

Thanks for all the support.
 

crohnsinct

Well-known member
Wow only 20 mg's? That is encouraging! Is it IV or PO?

3-4 hour stretch? Hey we will take any little improvement we could get!

Have they discussed bowel rest and TPN? It could really help the bowel heal while also improving his nutritional status if it comes to surgery.

We are all hoping light along side you!
 
Nobody has mentioned tpn yet... I meant to ask the doc today but forgot...

Will ask tomorrow for sure. J is actually eating relatively well even if he is still losing weight.

Thanks for all the good wishes!
 

my little penguin

Moderator
Staff member
They still have him on normal food ? And considering surgery with doing inpatient formula only or tpn gut rest ????
They always pulled food for ds when he was having numerous bm inpatient and then only allowed formula .......
 
I hope they try TPN + bowel rest or at least all-formula to try to stabilize things.

I'd be throwing antibiotics at it as well. eg Cipro, flagyl, azithromycin, or amoxicillin.
 
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So... Some positive signs for j ... The doc thinks he is doing well and incrementally improving. Tummy is soft and he is brightening up. Still up multiple times during the night but it's reduced. One semi formed poo last night before bed.

Very early days but things might be moving in the right direction...

They said nothing on tpn... And I forgot again. Would be nice to get his weight up...
 

crohnsinct

Well-known member
Moving from liquid to semi solid is awesome news! Is frequency going down also? Bleeding?

Great to here he is doing better and hear you a little brighter also. We will take all the tiny signs we could get! I love it when the docs are encouraged also!

I know hospitals don't really like to place a PICC line because of infection risk. It is just that if disease is really so out of control and his nutritional status is so bad he really needs a little help. EEN would actually be best. Even in studies EEN is shown to have better results post op. So even if they would consider EEN that would be good. But honestly every time O has been in bad shape and hospitalized they have put her on TPN right away because of the urgency of the situation. I learned last summer one of the reasons they hate the weight loss is because the weight loss starts off the inflammatory cascade and disease activity. Further the body can't heal properly because every ounce of energy is being put into daily bodily functioning and healing takes a back seat.

Hopefully if his bowel can start healing the weight will slowly start to come on. Are they weighing him bed side every morning?
 
Omg this is such a roller coaster ride. J has not been good at all for the last couple of days after a brief lift mid week.

I don't know if that's because there was a response and it has petered out.

Infliximab again tomorrow. This is so exhausting for everyone. Poor J.
 

crohnsinct

Well-known member
Oh no! I am so sorry. Those of us who are seasoned and jaded know not to get too excited.

I really hope the next Remicade helps.


What level of steroids is he on now? IV or PO? Perhaps they can give him budesonide as it isn’t as systemically absorbed.

Sorry I don’t mean to harping on things. I know how hard it is to be cooped up in the hospital trying to trust the docs with your very sick child. We are all there in spirit with you. I will say some extra prayers for you guys

I may have said this before but inflammation really sips up the drug and it is hard for their bodies to hold onto it so it would make sense that he needs another dose just one week after the last. Especially if they have tapered his steroids.
 
He's on 20mg of oral pred. They are intending to get him off the steroids quickly as they've deemed him non responsive.

Basically the IV steroids didn't produce any kind of bounce.

They do want to do the enemas though as there is a lot of clustering.

We are actually pushing for him to come back home today so he can get some proper rest. They're reluctant as his score is so high. But we're not winning right now so I think it's worth it.

Second infliximab this morning. Cross your fingers and toes.
 

crohnsinct

Well-known member
Oh good. I was going to ask about reveal therapies. I am glad they are trying them again. If the enemas don’t work there is also suppositories and foam. In studies they find foam works the best for the sigmoid colon and I have to say for O thus has proven true. Enemas didn’t help at all. Suppositories were good for about a week but foam has done the best job.

In our experience O always needed 40mg of IV steroids for Them to touch a serious flare. 20 would never do it. But I know he has diabetes so maybe that is why they don’t go higher? But budesonide is not as systemically absorbed as prednisone so it is an option.

Another thing they tried with O was tacrolimus. They tried that because she had been on steroids too much the previous two years.

Any discussion about EEN or TPN for gut rest? Although TPN would mean you have to stay inpatient so they could monitor him. How is his weight doing?

Grasping at straws here because we have to do everything we can to help Remicade work but have you looked at the SCD as a diet or CDED (although that one uses formula) The SCD is very diabetes friendly. My husband has diabetes and O was put in the diet and he is doing very well on it. I can’t say it is working great for O but I think each thing we are doing is helping a little.

Have they ruled out toxic mega colon? Any plans for scopes? MRE?

I am so so sorry you all are going through this I will keep praying that Remicade works it’s magic.
 
So we got j back from the hospital yesterday after the infliximab. They'd prefer to have kept him in but the hospital is just exhausting.

J got an eight hour stretch of sleep last night and a good 2 hour nap this afternoon so it feels worth it.

He's been active on the toilet in between. The ibd nurse has told us that we should be seeing a response by Friday. We're trying rectal therapies too.

After that I think the consultant is advising surgery. We are in there next Tuesday so we will see what they say.

@crohnsinct they started on 40 IV pred and are weaning him off due to lack of response. They have ruled out toxic megacolon... Nice soft tummy etc. Diet is easier to control now we are home. Food is mostly awful in the hospital. It's not a place for sick ppl.
 

crohnsinct

Well-known member
IDK about insurance rules where you are but you could try to add Entyvio to the Humira before moving to surgery. Or some of the antibiotic cocktails that O has tried. She does get "some" response from them. Also, don't rule out some sort of diet therapy to get to a point where REmicade can take over. I know it is a lot to consider and you just need to get through each day as it comes. I am really hoping that he responds to the Remicade. When will his next infusion be? An 8 hour stretch at night is pretty good for him eh?
 
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I'm so sorry to hear your boy is having such a hard time. Agree that hospitals are not somewhere you would ever want to be especially if you feel tired and rubbish! Just keep an eye on his vital signs though (heart rate, blood pressure, temperature - you can get digital ear thermometer online and blood pressure cuff) so if there is any turn for the worse you are on it. Now he's home I agree rest very helpful and maybe a gut friendly diet, anti inflammatory and easily digestible and lots of nutrients? I'm thinking lots of soup and smoothies, scrambled egg, porridge. Bone broth is supposed to be helpful (boil what's left of a chicken after a roast dinner for a few hours, smells the house out but super kind to the gut) I put turmeric and coconut oil in it but for a kid you might have to blend it with something to make soup. I really hope he turns a corner soon. Best wishes x
 

crohnsinct

Well-known member
^ second that about rest. When O was in the hospital last summer the inpatient team kept telling her to get up and get around and some exercise and her GI told her to stay put and rest as much as possible. The body needs all it's energy to heal and he just wanted her laying in bed (of course going for a little walk here and there). Just be careful not to flip flop his days and nights. That's a bear to reverse.
 

crohnsinct

Well-known member
Just checking ing on you guys.

Wanted to share that I am a member of an SCD families group. It is a wonderful group and everyone there is at a different point in their Crohn's journey. Many use diet alone, many use diet and drugs and some have left diet and are using all drugs. Anyway, there is a big discussion going on right now about the benefits of using Vancomycin to treat Crohn's and for some reason a lot of them say that Remicade alone didn't work for their child but when they added Vanco their health and healing took off. Might be something to discuss with your child's docs. They are explaining that vancomycin has anti tnf action AND there aren't the same antibiotic resistance problems as with other antibiotics.
 
So, J's condition is improved since his second infusion on Monday. Both night time and day time activity is down. He has been getting up at most once a night this week.

I am not getting overly excited but there is definite improvement in his scoring and number of visits to the bathroom. We've another 2 and a half weeks to the next dose (I believe) as part of the accelerated dosing program.

I'll definitely ask about vancomycin by the way - sounds interesting. And we are trying to keep his diet as gut friendly as we can - he is eating lots at the moment. Unfortunately he is refusing to do the shakes - would be so much quicker getting back to himself if he did.
 
This is great news. The fact that his appetite is good and his bowel frequency is down is obviously the direction you want to see. Good sign that Remicade might be able to get him back to normal... Fingers crossed.
 

crohnsinct

Well-known member
Oh I am so happy for you guys!

I think this is encouraging. It could be the result of the enemas but even that is encouraging because at least it means the colon is responding to something.

Refusing to drink the shakes once they feel better is totally normal. I would just go with it for now. So glad he is eating a lot. This will give his body energy to heal. Sleeping more at night gives rest to heal.

We are hoping right along side you for the next 2.5 weeks. ARGH! That is the thing I hate most about this darned disease...you wish time away...can't wait to get to next shot, infusion, labs, visit, scope etc. Although once they are in a decent remission that all stops.

Hugs!
 

crohnsinct

Well-known member
How are you doing through all this? Please remember to take time to care for yourself. You need to eat well and get rest also. The stress can cause you to flare and we don't want that!
 
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