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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
 
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