5'3.5" and only 70lbs

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ElleT

Joined
Jan 6, 2022
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my daughter was diagnosed with Crohn's in July of '21. her last well child check was in June of '19 she was 4'10" and 74lbs. 2.5 years later she is +5" taller and only at 70lbs.
two nights ago she pooped in her sleep, woke me at 5am in tears.
she has been on Humira for 11 weeks now. we tried a homeopathic approach for about 10 weeks prior to starting Humira with symptom improvement but inflammation markers the same or higher.
she is soooo skinny i have to try hard not to tear up looking at her sometimes. we haven't seen improvement yet, anyone have a similar experience? when did your child start to notice an improvement?
 
What dose of humira is she on ?
40 mg or 20 mg ?
How often does she receive humira (every 14 days )?
Did they give steriods to lower inflammation at the same time if not it takes longer to work since they have to reduce the inflammation?

Formula ?
Has she done exclusive enteral nutrition-formula only (no solid food )- such as peptamen jr , peptide , pediasure, Kate farms , kids boost ?
Age ?
To gain weight- inflammation needs to be lower
You can add formula as supplemental nutrition to her diet to help weight gain .

My kiddo was dx at age 7
Didn’t gain weight until he was one steriods plus meds at age 8 (remicade )
He continued with peptamen jr as supplemental nutrition for years later neocate jr
Now does just 2-3 boost a day
He is 18 now and gained over 119 lbs since dx and grew over 12” at 5’10”(168 lbs)
He takes Stelara and methotrexate
 
Those heights and weights match up almost exactly with my daughter's when she was diagnosed. And yes, 70 lbs and 5'3" is really scary to see. When my daughter's GI saw her at 70 lbs, she told us that we either needed to start EEN with an NG-tube or TPN. I went home and sobbed. I just could not imagine my daughter being able to handle either of those. After much agonizing, we decided to try EEN, and it ended up being a real miracle treatment for my daughter. The NG-tube was uncomfortable for a few days, but after that she hardly noticed it. She started feeling tons better after just a few days too--her abdominal pain went away, and she had so much more energy. After 8 weeks of EEN she had gained 15 pounds, and at that point she switched to eating during the day and using the NG-tube overnight for supplemental calories. After another 8 weeks she was up to 90 pounds. At that point, Remicade and methotrexate were enough to keep her in remission and growing.

Like MLP said above, either EEN or steroids really help at the beginning because they knock out the inflammation so that your child's intestines can absorb nutrients and gain weight. Once your child is absorbing nutrients again, it gets easier for other meds to take over. EEN can be as effective as steroids without the steroid side effects, so it's definitely worth considering.

Let us know if you decide to try EEN--lots of us on this forum have experience with it. Some kids can drink the formula; others like my daughter find it much easier with an NG-tube. Also, many kids need to use a semi-elemental formula to see results.

Hang in there and I hope your daughter starts to see improvement soon.
 
@ElleT - welcome to the forum. I can say things do get better. Although my son was older, he too was growing slowly and reached puberty much later than normal. He too was very thin - at one point 109 lbs at 5'8" - but the right medication makes all the difference. Feel free to ask any questions and vent - this is the right place for that, and collectively, parents on these forums have many many years of experience. Hugs.
 
she takes 40mg of Humira every 14 days after her starter dose of 80. she has had only supplements from the homeopathic Dr and then straight onto Humira after 10 weeks and no improvement in her levels. She has NO interest in doing a liquid diet- that was a worse idea for her than the shots. It surprised me that the nutritionist would suggest somthing with so many artificial ingredients that are inflammatory to an already overtaxed little body. She loves to eat and she loves to cook, she feels that it would be a punishment not a cure to not participate in meals. Do kids need to stay in the hospital to be fed by tube? I have tears in my eyes just processing the thought of that. She is 12 1/2, thankfully i am homeschooling her these days as she is very lethargic most days and eating small meals all the time and often on the toilet. we see her Dr again on Monday, i had asked him about switching to something else, or adding something??? There must be something more/better to do that will aid her. i am frustrated that after 9 months of knowing she isn't right, 3 Dr's, 2 surgeries, scans, labs, pills, shakes, shots etc she has lost weight and seems to show no improvement. i expect her labs will reflect that. thank you for sharing... i feel isolated and alone to deal with this, my husband gets cross with me when i get upset and discouraged, i have no one to vent to, so thank you.
 
No hospital stays for ng tube
Yes the formulas have a ton of stuff in them
But they work
That is the whole point
Solid food is not her friend right now
That is why the docs recommended formula only
I know it seems counterintuitive that the formula should cause inflammation based on what’s in it
But study after study proves otherwise
Yes most kids hate formula only
Despise is a better word (except for very very little kids under age 5)
But it is medicine
That is how we treated it
It heals the gut with minimal side effects and lets the kiddo gain much needed weight
Typically done as formula only for 8 weeks
Then lowered down to 2 -3 a day lys as much organic food she wants /tolerates

It’s medicine not food
She will have more energy
Not be in the bathroom as much and look/feel better
Abd only 8 weeks
We bribed Ds heavily for each week finished
Inflammation went down
The drugs take over you just drink 2-3 a day as snacks with her regular food

It’s NOT a punishment it’s a way to get healthy
Some also need oral steriods which most teens do not want
Acne ,mood swings,swollen moon face
Trust me -formula is the lesser of the two evils
 
I totally understand where you are coming from. We are an "organic garden, farmers market, vegetarian for years" family, and we tried an all natural alternative diet at first (SCD in our case). I could not understand how formula--with all its artificial and processed ingredients--could work so well. But it really does. Both anecdotally--lots of success stories on this board--and in research papers.

As for the NG-tube, it is sometimes placed in the hospital, but it's easy to deal with at home. Some kids actually just use it at night, and they easily learn to put it in and take it out themselves. Others leave it in for a week at a time, and they or their parent replace it once a week. Kids don't have to be hooked up to the pump all day, but you can disconnect the tube from the pump and just tuck it behind your ear and go about your day. My daughter needed to be hooked up 22 hours a day at first, because she needed a very slow drip at first (so she wouldn't feel nauseated). We were homeschooling that spring so she just pulled the IV pole with the pump around the house. She honestly didn't even notice it much after the first couple of days. And she just felt so good when she was finally absorbing calories.

When she switched to night EN, she was able to learn how to put in her tube herself, just by watching some youtube videos. (And with some small bribes as incentives!)

As for missing food, for the whole 8 weeks that she was doing EEN, the rest of the family never ate or cooked in front of her. Not all families do this, but it really helped my daughter. I would cook when she wasn't around, and then we would eat downstairs. It was a little inconvenient, but we were happy to do it to help make things easier for her. Also, her doctor approved a 90% EEN diet for her, so she was allowed to eat 200 calories of real food every day. She was never that hungry since she was getting lots of calories from the formula, so that 200 calories of food was very satisfying to her. We chose the foods from the first stage of the IBD-AID diet so that they were anti-inflammatory.

My daughter has pretty severe sensory integration issues, so she is very sensitive to discomforts and pain. I really thought an NG-tube would be impossible for her. If she could handle it, I think most kids can. (She was 12 1/2 too, by the way.)

I know it feels like an impossibly hard thing at first--but it really can be a miraculous treatment for Crohn's.
 
thank you so much! i was thinking that she could be hospitalized with a tube, had no idea that she could be with us. The last place i want her especially NOW or- ever, is in a hospital. i have had tears in my eyes and periodically sobbing (hiding in the closets packing-we move in two weeks) for the last couple of hours since i read the last post, thinking we may be told on Monday that she may need to be hospitalized for 8 weeks. she is a tough cookie, dealt with an inflammatory blood disease, HSP, and was hospitalized for a month when she was 9. and now this. thanks for the kind words and optimism, i need it right now.
 
No tube required
Mine never used a tube
Polymeric formula is pediasure , kids boost
Easiest to drink -harder for a gut to absorb
Semi elemental-peptamen jr ,peptide , Kate farms
Ok to drink but may cause tears for a day or two
Use a straw at the back of the mouth
Cover the container with a lid We used the disposable coffee cups with thick lids
Crushed ice - the colder the better but you can’t freeze it (nutrition is lost then )
Pinch the nose as well
These tricks work wonders until the taste buds decide it’s ok

Elemental is easiest to absorb but most need a tube due to foul taste
These are neocate jr and elecare
Ds drank his neocate jr chocolate version but said at first it was like drinking rotten frozen French fries
He was 12 at the time and didn’t want a ng tube

If she needs a tube
Get the baby size 8 fr (I think ) smaller is easier

Also just like infants
Try the samples from Gi first
Get the horrible one a taste elemental
Then the semi elemental doesn’t taste as bad
And polymeric ends up tasting like dessert
Sequence is key
 
My kiddo also used an NG tube. My daughter tried drinking formula and she did get used to semi-elemental Peptamen Jr. but was never able to drink enough to even maintain her weight, much less gain. So then her GI told she had to try an NG tube. She was VERY resistant (she was 16), but tried it and honestly, though she was uncomfortable the first few nights (she did feeds only at night at first), she was fine after the first few days. In fact, in about a week or so, she could insert her NG tube in less than 10 seconds. She chose to insert hers every night and remove it every morning so no one at school had to know, but if your daughter is home-schooled, then she could keep hers in. In her case, her Crohn's was controlled so she did not do EEN (100% formula) but supplemental EN just to gain weight. Initially we started at 60% formula and 40% food. After getting used to the tube, she declared it was WAY better than drinking formula and she would never go back to that!! She was hospitalized when we first started the NG tube to watch for Refeeding syndrome, but it was for days (like 4, I think), not weeks and she did not develop it.

She later developed Gastroparesis in addition to Crohn's (delayed gastric emptying, in her case unrelated to the Crohn's). She dropped down to 80 lbs at 5'2 and developed an arrhythmia and then actually did develop Refeeding Syndrome (electrolyte abnormalities which can be very serious because the body is so unused to food) when she had a different kind of tube placed (an NJ tube that goes past the stomach into her small bowel since her stomach did not empty and she had started throwing up NG tube feeds). That was very scary and her doctors said that if she did not accept the tube, her organs could get damaged. She didn't want an NJ tube because it has to be placed by interventional radiology and so must stay in all the time. So we watched her weight drop from 96 lbs to 80 and it was so scary. I had no idea how damaging being severely malnourished could be until her doctors told us - it sounds silly but I just didn't know.

Finally hearing her organs could be damaged and a bribe (my husband promised her a kitten :rolleyes: - I recommend smaller bribes like new clothes or something, but she was 18 at the time so we could not force her to accept the tube, so a kitten it was) made her try the tube (and that kitten is now a very happy cat we all adore). For that, she was placed on 20-22 hour feeds and 85% formula and 15% food. It took a while, but she went up to 105 lbs which had been her normal weight. It took a few months to gain all that weight back but she felt SO much better once she was on tube feeds - she had been absolutely exhausted and dragging herself to school (she was a senior in high school).

Many GIs now allow kids some amount of food - usually the ratio is 90% formula and 10% food or 80%/20%. There are studies showing that does work for most kids - not all, but most. That's usually done when the EEN is used as a therapy to induce remission and not just when it's supplemental for weight and growth reasons.

She did later do 100% formula for 16 weeks and honestly, she found that very, very hard. We also did not eat in front of her and in the summer, we grilled outside as much as possible so she didn't have to even smell food. But many kids are able to cope better - in fact, sometimes the younger they are, the easier it is. That was just last year and she was 24. At the children's hospital we went to, which has one of the best ped. IBD programs in the country, they teach kids as young as 6 to insert their own NG tubes.

I know it is really overwhelming, but she can do it! There are lots of videos on youtube of kids inserting their own tubes if she's interested.
 
Oh and the size for an NG tube is 6Fr - the infant size. She used that at 16 years old and I know there was another mom on here (@Tesscorm) whose 5'10 17 year old son used the same size. It's a tiny thin tube that is very flexible - like spaghetti. My daughter also tried 8Fr but found 6Fr much more comfortable.

She also was given a backpack with the pump, so it's not like she was connected to an IV pole for 20 hours a day. She was completely mobile. The backpack and pump are very light and small - made for kids. She still has those child sized backpacks and used them last year when she was on 100% formula for 4 months.
 
Sounds like Humira alone isn't working or isn't working well enough. I think there are basically 4 main options next:

1. Add EEN (with a tube if necessary)
2. Add an additional medication such as methotrexate
3. Increase Humira dosage/frequency
4. Switch biologics

Personally I recommend 1 and 4, but I know some people have success with 2. #3 is questionable to me, but maybe it works for some people.

Regarding EEN, we've found that Pediasure has been the best tasting option, and Pediasure Peptide ended up being more effective than regular Pediasure. Unfortunately, we had to resort to EEN for a very extended period of time because the medicines weren't working, but hopefully you can find something that works well enough to allow food. Just don't think that you *have* to stop after 8 weeks.
 
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So to explain things
Your Gi needs to know if your child is a primary responder to humira (anti tnf )
Which is different than loss of secondary response
If your a primary responder the medicine works …
But you can’t know if it will work until the inflammation burden is lowered either by a long coarse of steriods or een (formula only ) or both plus methotrexate-just depends how much inflammation is going on

Then you wean the een or steriods and see if humira can keep up .most of the time it does .

Secondary loss of response typically means you used the drug for a year or so and we’re doing well but then got worse
When you have secondary loss of response they typically increase frequency of humira from every 14 days to every 7 days .

Ds went for a year of humira at every 14 days
Then another year or 18 months at every 10 days
Then another bump to every 7 days for another 12-18 months
And finally year he needed it every 5 days .
At some point methotrexate was added for his juvenile arthritis.

Since the med was treating both we held on for 5 plus years.
Well worth it since there are only so many biologics
 
Hey there. Another mom with a daughter similar to yours at dx.

I just want to reiterate that many times the inflammation is just too bad for the maintenance drugs to reduce and get the kids into remission. Especially if you tried other things and they weren't working the inflammation was left to get worse and worse....not your fault at all. Just a matter of your first therapeutic choice just wasn't working. You really need to attack the inflammation with either steroids or EEN at the beginning. I have two daughter's with Crohn's and we have done both.

When my oldest was dx'd and in the hospital it was straight to steroids because we just didn't have time for EEN and EEN as well understood back then. She was on Remicade at the highest dose and frequency. Every time we tried to reduce the steroids, she would flare right back up. The GI said we had to add methotrexate. Thanks to the parents here we learned about EEN and presented that to the doctor and he whole heartedly supported it and it was his first choice but he said few kids choose it. We tried it and within the 8 weeks my daughter was doing so well that we were able to slowly wean off and Remicade was able to handle her disease from there.

When we presented it to our daughters we didn't say, "hey how about you give up all food and drink for 8 weeks". We said, "hey how about you try one shake". She did and it wasn't all bad. Then we said, "how about you try a day". She did. Then "wanna try another day". One thing led to the next and she lasted the full 8 weeks. The important thing was we told her at any point she could call it quits and we would go to steroids. She always had control and an escape clause.

I would suspect the GI will want to pull a Humira levels and antibody test. The thing with these kids with massive inflammation is they sop up the drug like crazy and actually and up pooping a lot of it out. They also metabolize the drug a lot faster than adults. So at the beginning, they need much higher or more frequent dosing than the prescribing guidelines. Then as they heal you can start to pull back a bit. @Jbungie is experiencing this now. His son had a terrible time responding but is just now doing great and able to extend out his infusions of Remicade.

Believe me food is the center of our universe and I never thought in a million years my daughter would make it the full 8 weeks but when she started feeling so much better and realizing how awful she had been feeling she didn't look back. She has now done EEN or TPN (TPN is generally only used in the hospital) three or 4 times. My younger daughter has hopped on and off EEN several times in order to avoid steroids and knock back creeping in inflammation. They drank it, one did NG tube and the other now has a G tube but she has a lot of issues.

You could add Methotrexate and actually depending on the antibody testing that might be your best option.

One last comment...malnutrition works against healing. My daughter has been in a malnourished state for years now and has also been in a very tough to control disease state for years. Perhaps you could explain to your daughter that if she were to try EEN or even PEN it will actually help the drugs work better. The sooner she feels better the sooner you can drop the EN.

The beginning is a lot of trial and error and learning and bargaining and dare I say bribing. Hang in there, you will find you way.
 
Hi ElleT

I'm very sorry that crohns has become a part of your life. But, I'm glad you've found this forum and it's members. As you've already seen, there's an incredible amount of knowledge and experience here and all the support and advice you need to get you through the learning curve. Once your daughter is on the right meds and beginning to heal, all will settle. And, as time passes, your daughter continues to do well and you learn more, your 'new normal' will be okay!

I don't have much more advice to give you but I can confirm what Maya mentioned re the tube size. My son did use 6Fr and found it quite tolerable. It's bothersome the first few days but it didn't take long before he wasn't bothered by it. He was a bit older than your daughter and was given the choice between EEN and steroids (dr gave him lots of positive encouragement to try EEN while highlighting the negatives of steroids) but, as crohnsinct said, my son did have the choice to drop EEN if he found it too difficult. He learned to insert the tube himself (took only two or three tries with a nurse) and would insert the tube every evening and remove it in the morning. After a week or so, it only took a few seconds for him to insert and even easier to remove.

His EEN period was 6 weeks. During that time, he ingested his formula overnight, while sleeping. During the day, he was allowed clear liquids (broth, clear pop, apple juice, gaterade, etc.), popsicles (no banana or chocolate), freezies, jello. I would send broth in a thermos so he could 'eat lunch' with his friends at school and I arranged for the school to keep freezies for him (and his friends ;) ). It wasn't easy but he did get through the 6 week period. Because he wasn't drinking the shakes, so was taking in all his food overnight, he did get hungry by evening... unfortunately, only distraction could help this. His formula was not palatable so he did not have the option to drink but, the hunger issue can easily be solved if she is drinking shakes rather than ingesting overnight. If she agrees to use one of the 'drinkable' shakes, but finds the minimum quantity too much to drink, she can still do both... use an NG tube overnight for some of it, and drink some during the day. (Just not sure how this would work with insurance, ie if insurance pays for the equipment if a 'drinkable' shake is being used??)

My son was inpatient when diagnosed and was on IV flagyl when he initially started EEN. But, within a week of starting EEN, there was huge improvement (not sure how much of an impact flagyl had). In the period pre-diagnosed, he had dropped from approx. 140-145lbs to 120ish. As has been said, inflammation needs to heal before real weight gain will be seen but, within six months, my son had probably gained 30 lbs?? (it's been a while, so I've forgotten exactly how much). And, this was the result ONLY of the formula.

I don't recommend this but his ped GI did not start him on any meds - he did 6 weeks of EEN, returned to a regular diet but with supplemental EN (1/2 the dose, 5 nights per week). This seemed to lower his inflammation and then maintain it. HOWEVER, and a big 'however', his inflammation did not completely disappear and, upon moving to an adult GI (a year after diagnosis), the new GI put him on remicade. His concern was that the simmering inflammation would/could eventually cause more permanent scarring and necessitate surgery. I'm not recommending this at all but telling you just to highlight the benefits of EEN. I really think EEN and supplemental EN had a huge benefit for my son. He continued with the supplemental EN (eventually switching from using the NG tube with unpalatable formula to just drinking Boost shakes) for years.

The first year is the hardest time... so worrying when you see your child sick, frustrating when the meds aren't working as you'd like, etc. but, really, it does get better and easier.
 
P.S. Moving is so stressful! Even if it is an exciting move that you want to make! And doing it around holidays, while homeschooling your child and dealing with a new diagnosis that isn’t cooperating? If you weren’t hiding in the closet crying I would be worried!

Be kind to yourself. Try to do something relaxing each day. Come on here and vent. You will get through. We promise.
 
Oh yes, when my daughter did EEN and no food, she drank a LOT of broth. That helped fill her stomach because her tube went into her small bowel, past her stomach because of her Gastroparesis and so her stomach was empty always and she was hungry.

Most kids with Crohn’s don’t need that kind of tube - usually an NG (naso-gastric) is used. And if you use a formula that is semi-elemental, she could also drink some of it. But her stomach won’t be empty with NG tube feeds so that should be less of an issue.

I want to echo what other moms have said above - it’s likely that you need to figure out if she’s a primary non-responder to anti-TNFs (they just do not work) or if she is a secondary non-responder (the drug worked at first but then she lost response). In her case, it sounds like you need to do Humira levels and antibody testing - if her Humira levels are low and/or she has antibodies, you could up the frequency of Humira and/or add MTX. I will say that my younger daughter did not respond to Humira until we upped the frequency to every 7 days and added MTX. This was before antibody and level tests were available so I don’t know what hers were, but I suspect at least her levels were low because weekly Humira and MTX worked like magic for her!! It took 3 months on Humira every 14 days and then every 10 days and then once we upped it to every 7 days and added MTX, it took another 3 months - so 6 months total before she felt a whole lot better.

In your daughter’s case, I think if she does have low levels, then upping Humira is the way to go and you would use either EEN or steroids as a bridge until it works.

If her levels are high enough and she doesn’t have antibodies or if she has a huge amount of antibodies, then your GI would probably put her on a different drug.

But regardless, some sort of formula, whether it is 100% formula or supplemental/partial EN for weight, should help her feel better. My daughter could not believe at all how good she felt when she was getting 2200-2400 calories a day - that’s how much she needed to gain weight (kids with IBD often need more calories because of inflammation and absorption issues). She struggled with malnutrition for years and it was shocking to see the difference when she got proper nutrition. She looked so much better, felt so much better and had so much more energy - it really was an incredible change.

If you do decide to go with EEN, I would also advise taking it one day at a time and trying to keep her distracted around meal times.

So sorry you have to deal with all of this and moving!!

But hang in there and remember that you will find your “new normal” and things will be ok.
 
@Tesscorm - our insurance did pay for a "drinkable" shake - Peptamen Jr. It's semi-elemental, so doesn't taste as good as Boost or Ensure, but M was able to drink it. She hated it at first, but did get used to it surprisingly quickly. We used the tricks suggested above - kept it cold and used a straw. She liked chocolate and strawberry, if I'm remembering correctly. You could definitely do a combination of tube feeds and drinking if you use a semi-elemental shake.
 
Same here
Insurance paid for peptamen jr (even though it was drinkable )
Under durable medical equipment infusion therapy supplies -not under prescription plan
Later paid for neocate jr choc same way
 
And one other hint besides cold and straw is out it in a cup with a lid so you aren’t smelling it as much.
 
Maya142 said:
My kiddo also used an NG tube. My daughter tried drinking formula and she did get used to semi-elemental Peptamen Jr. but was never able to drink enough to even maintain her weight, much less gain. So then her GI told she had to try an NG tube. She was VERY resistant (she was 16), but tried it and honestly, though she was uncomfortable the first few nights (she did feeds only at night at first), she was fine after the first few days. In fact, in about a week or so, she could insert her NG tube in less than 10 seconds. She chose to insert hers every night and remove it every morning so no one at school had to know, but if your daughter is home-schooled, then she could keep hers in. In her case, her Crohn's was controlled so she did not do EEN (100% formula) but supplemental EN just to gain weight. Initially we started at 60% formula and 40% food. After getting used to the tube, she declared it was WAY better than drinking formula and she would never go back to that!! She was hospitalized when we first started the NG tube to watch for Refeeding syndrome, but it was for days (like 4, I think), not weeks and she did not develop it.

She later developed Gastroparesis in addition to Crohn's (delayed gastric emptying, in her case unrelated to the Crohn's). She dropped down to 80 lbs at 5'2 and developed an arrhythmia and then actually did develop Refeeding Syndrome (electrolyte abnormalities which can be very serious because the body is so unused to food) when she had a different kind of tube placed (an NJ tube that goes past the stomach into her small bowel since her stomach did not empty and she had started throwing up NG tube feeds). That was very scary and her doctors said that if she did not accept the tube, her organs could get damaged. She didn't want an NJ tube because it has to be placed by interventional radiology and so must stay in all the time. So we watched her weight drop from 96 lbs to 80 and it was so scary. I had no idea how damaging being severely malnourished could be until her doctors told us - it sounds silly but I just didn't know.

Finally hearing her organs could be damaged and a bribe (my husband promised her a kitten :rolleyes: - I recommend smaller bribes like new clothes or something, but she was 18 at the time so we could not force her to accept the tube, so a kitten it was) made her try the tube (and that kitten is now a very happy cat we all adore). For that, she was placed on 20-22 hour feeds and 85% formula and 15% food. It took a while, but she went up to 105 lbs which had been her normal weight. It took a few months to gain all that weight back but she felt SO much better once she was on tube feeds - she had been absolutely exhausted and dragging herself to school (she was a senior in high school).

Many GIs now allow kids some amount of food - usually the ratio is 90% formula and 10% food or 80%/20%. There are studies showing that does work for most kids - not all, but most. That's usually done when the EEN is used as a therapy to induce remission and not just when it's supplemental for weight and growth reasons.

She did later do 100% formula for 16 weeks and honestly, she found that very, very hard. We also did not eat in front of her and in the summer, we grilled outside as much as possible so she didn't have to even smell food. But many kids are able to cope better - in fact, sometimes the younger they are, the easier it is. That was just last year and she was 24. At the children's hospital we went to, which has one of the best ped. IBD programs in the country, they teach kids as young as 6 to insert their own NG tubes.

I know it is really overwhelming, but she can do it! There are lots of videos on youtube of kids inserting their own tubes if she's interested.
Click to expand...

What is Refeeding Syndrome and what are the signs for Gastroparesis?

You are one strong parent. This is very tough to read and I can't imagine the agony for her and you. Thank you for sharing your experience.
 
Without getting too technical, it is usually when the body has been terribly malnourished and in starvation mode. In that mode is metabolizes differently. Then when it suddenly gets nutrition (in the form of formula), it switches the way it metabolizes and too swift a change can cause metabolic and hormonal changes that can be extreme and dangerous. This is why, when you undertake EEN from a very malnourished state you should work with a Registered Dietician.

Gastroparesis is a motillity disorder where food is not moved through your system at a proper rate. It is slowed down. You will feel full quickly, could feel nauseous, have vomitting, could be bloated, have acid reflux, lack of appetite and sometimes changes in blood sugar. Understandably, this condition could lead to weight loss and malnutrition also. There are motility specialists within the gastro world but not a lot.
 
crohnsinct said:
Without getting too technical, it is usually when the body has been terribly malnourished and in starvation mode. In that mode is metabolizes differently. Then when it suddenly gets nutrition (in the form of formula), it switches the way it metabolizes and too swift a change can cause metabolic and hormonal changes that can be extreme and dangerous. This is why, when you undertake EEN from a very malnourished state you should work with a Registered Dietician.
>> In that case, maybe slowly introduce the drink to hopefully prevent refeeding from happening? :/

Gastroparesis is a motillity disorder where food is not moved through your system at a proper rate. It is slowed down. You will feel full quickly, could feel nauseous, have vomitting, could be bloated, have acid reflux, lack of appetite and sometimes changes in blood sugar. Understandably, this condition could lead to weight loss and malnutrition also. There are motility specialists within the gastro world but not a lot.
Click to expand...
>>Sigh.
 
crohnsinct said:
That’s really only something the RD can tell you. Have you all decided to move ahead on EEN?
Click to expand...

I haven't decided whether we would however since he is dropping weight I want to supplement him with some drinks. I didn't know about the refeeding problem...
 
I think if you are just supplementing you should be fine but if you are concerned shoot the GI a message in my chart.
 
What is Refeeding Syndrome and what are the signs for Gastroparesis?

You are one strong parent. This is very tough to read and I can't imagine the agony for her and you. Thank you for sharing your experience.
Click to expand...
Refeeding Syndrome is caused by electrolyte imbalances which are due to the body being so malnourished and unused to food. It's essentially when the body has been in starvation mode for a long time and suddenly is given a lot of food/formula - then electrolytes change rapidly and that can be very dangerous and even fatal (since it can cause arrhythmias and other heart issues). The electrolytes they watch are mainly phosphate and potassium as far as I can remember...It's been a while!! She was given IV potassium and phosphate because her labs were extremely low while we were inpatient and then she was put on supplements (pills) for months.

The doctors at our children's hospital (which has one of the biggest and best pediatric IBD programs in the country) said that while they often admit kids who have been malnourished for a long time to the hospital to watch for Refeeding Syndrome, it's really rare to actually develop it. One of the things they told my daughter (possibly in an attempt to get her to understand that she was VERY malnourished and needed a feeding tube) was that it was first discovered after the Holocaust 😬. So she really was very malnourished. It was extremely tough to watch, as a parent, especially since she was newly 18!
As long as your GI knows that you're supplementing with shakes, I'd think you're ok. If not and your child has lost a LOT of weight, then I'd definitely message him or her to ask.
 
Maya142 said:
Refeeding Syndrome is caused by electrolyte imbalances which are due to the body being so malnourished and unused to food. It's essentially when the body has been in starvation mode for a long time and suddenly is given a lot of food/formula - then electrolytes change rapidly and that can be very dangerous and even fatal (since it can cause arrhythmias and other heart issues). The electrolytes they watch are mainly phosphate and potassium as far as I can remember...It's been a while!! She was given IV potassium and phosphate because her labs were extremely low while we were inpatient and then she was put on supplements (pills) for months.

The doctors at our children's hospital (which has one of the biggest and best pediatric IBD programs in the country) said that while they often admit kids who have been malnourished for a long time to the hospital to watch for Refeeding Syndrome, it's really rare to actually develop it. One of the things they told my daughter (possibly in an attempt to get her to understand that she was VERY malnourished and needed a feeding tube) was that it was first discovered after the Holocaust 😬. So she really was very malnourished. It was extremely tough to watch, as a parent, especially since she was newly 18!
As long as your GI knows that you're supplementing with shakes, I'd think you're ok. If not and your child has lost a LOT of weight, then I'd definitely message him or her to ask.
Click to expand...

Thank you for helping me understand. You moms are all A+ troopers.

Which children hospital do you go to? Boston?
 
Maya142 said:
How is your child doing @asadmom? Remind me how old he is?
Click to expand...

He will be 13 in a month. He seems to be doing OK (but again I don't know what is OK OK or just OK or not OK) that is he is not in pain (knock on wood) and he is continuing to lose weight. His eyelids are very puffy, his eyes are dry, red and inflamed and I know they are due to Humira (that is a separate topic and I have bigger fish to fry). I had multiple opinions done and the last opinion was to give him supplement drinks so I got that but not have him on like a strict regimen. He does seem to understand that "it makes mommy's eyes light up when I drink a bit of this sweet drink". The drinks are super gross and have a lot of unhealthy stuff but the consensus I get is it's ok, give it to him so I shall.

He has been on Humira for 6 months (he hates it and I hate it) and I am looking into have him do een for a few weeks. Met with our dietitian to get our ducks in a row. She wants our final decision soon so she can order the formula. In the meantime I ordered some Pediasure online and will have him try those first. I had Kate Farms and I got addicted to it. It's so so yummy that I try hard not to drink more than 2 a day. Our dietitian said that Kate Farms is good but there is just not enough data to back up using it as a therapy so we will stick to the grossy Pediasure.

As for the internal... I don't know how he is doing. I got an ultrasound and the capsule imaging order. The docs said we can test him those whenever so I was thinking of saving them for like the day before we start een and then order them again for after een is concluded. Probably will get some blood/stool tests for before and after too. Thinking of starting a separate thread asking folks what tests to get for a comprehensive view. Our primary is fantastic so she will order what our GI doesn't order but will be good to have. Last time we did stool test our primary added a bunch on top of our GI's so we did 7 stools. Also each GI orders different things (which is very interesting) so I am collecting test names and our primary just orders this super set of tests.

I pray that his internal is ok. This is a very scary situation because its not obvious from the blood/stool.

Trying to learn constantly from this forum to stay informed.
 
How is he doing pediasure ??? I thought he was lactose intolerant???
Pediasure is milk based polymeric
It is not lactose free

Also did you keep a food log ? How many calories a day is he getting ???
You stated each Gi is ordering different things.
Do you have a single Gi you have decided on to follow his care ?
You need one Gi
Not more than one
Is your Gi ordering the een for you ?
 
Pangolin said:
If Kate Farms tastes better, I see no reason not to use that for EEN.
Click to expand...

She was worrying about the possibility of KF not carrying the same benefits as Pediasure and then we would be scratching our heads and wondering if we should switch to Pediasure and repeat. I am very torn about this. She also mentioned that KF is trying to do the same study too because they need to prove themselves as een for Crohn's.

At the end she did mention if I still want to go with KF she will support me and order it. *debating*

The thing is... I want to become one of the good statistics... am I messing myself up by not staying in line or thinking too much.
 
There's been some comparison testing of different formulas for EEN. I've looked into this before and seen the comparisons. In general, all of the formulas worked about equally well. There was no particular ingredient that stood out as a no-no. I don't know if Kate Farms was part of any of those studies, but I would expect that it works about the same as the others.

Edit: you may notice a difference between polymeric and semi-elemental formulas, though
 
Pangolin said:
There's been some comparison testing of different formulas for EEN. I've looked into this before and seen the comparisons. In general, all of the formulas worked about equally well. There was no particular ingredient that stood out as a no-no. I don't know if Kate Farms was part of any of those studies, but I would expect that it works about the same as the others.

Edit: you may notice a difference between polymeric and semi-elemental formulas, though
Click to expand...

Is Pediasure peptide elemental or semi-elemental? I can't quite tell. When you said the difference, you mean the effectiveness of een in terms of test results?
 
His eyelids are very puffy, his eyes are dry, red and inflamed and I know they are due to Humira (that is a separate topic and I have bigger fish to fry).
Click to expand...
Has he seen an ophthalmologist? Eye inflammation can cause red, painful eyes. Although puffy eyelids makes it sound more like allergies. Does his doctor think it's due to Humira? I've never heard dry eyes caused by Humira to be honest - not in the 9 years I've been on this forum. But iritis can cause red, inflamed eyes. Sensitivity to light is another symptom. Episcleritis, scleritis and uveitis are all types of eye inflammation that could be causing his symptoms.

Is your son on citrate free Humira? What part of it does he hate? Citrate free Humira does not contain citric acid and should not burn - most kids say it's not very painful. I wonder if you have somehow gotten the old Humira with citrate/citric acid - that REALLY burns when injected. Some things that helped my daughters (citrate free Humira was not available when they were on it, so it burned a LOT) - icing before the shot for 20 minutes, watching TV while doing the shot (so they were distracted), icing after the shot and of course, dessert after the shot ;). The other thing that helped was giving them control - my younger daughter started doing her own shots at your son's age and that actually helped her dread the shot less. They used the pen because they did not want to see the needle, but later both tried the syringe. One preferred it and said it hurt less because you could control the speed and the other said it was slower and therefore more painful and she preferred the pen/auto-injector.

If he's struggling with the shots, seeing a psychologist can help. Are you still seeing a GI at Stanford? They have psychologists who specifically work with kids with chronic illnesses and help them cope with all the tough stuff they have to go through - shots, blood work, EEN, scopes, missing school etc. I strongly recommend seeing a psychologist - my daughter was VERY against it but her GI absolutely insisted, so she reluctantly started seeing a psychologist who works with kids with IBD and other GI issues. She hated it in the beginning (she was an extremely stubborn 16 year old!!) but within a couple months was reminding me to make appointments. It made a world of difference for her. And it really helped her get used to a feeding tube and doing supplemental EN. Later on, she was a huge help when my daughter did 16 weeks of EEN - no food at all, which she found VERY hard (some kids find it extremely hard or even impossible and others are able to tolerate it without issues). My daughter saw her for 8.5 years before finally switching to an adult psychologist.

If he's been on Humira for 6 months and is still losing weight, has your GI discussed increasing his dose? Have his Humira levels and antibodies been tested? If he's on the max dose and is still losing weight, have they done Fecal Calprotectin recently or any imaging? It's possible Humira is just the wrong medication for him and he needs something else, like Stelara or Entyvio.

In terms of EEN, there are several different formulas that are commonly used. I don't know much about Kate Farms, but I do believe there is a semi-elemental version of it. My daughter used Peptamen Jr., which is semi-elemental and then Neocate, which is elemental. She was unable to drink enough formula to maintain her weight, much less gain, so she used an NG tube. She inserted the tube every night and removed it in the morning, so no one at school had to know! It sounds a LOT harder than it is - at the children's hospital we went to, they teach kids as young as 6 to insert a tube!

My daughter is lactose intolerant too and was told Pediasure Peptide was an option - it's ok for kids who are lactose intolerant. She just preferred the taste of Peptamen Jr. (our GI gave us samples to try) so we went with that since she tried drinking before using a tube. Pediasure Peptide is semi-elemental, so partially broken down and easier to digest. We kept formula cold and used a straw since semi-elemental formulas are not the best tasting. And put it in an insulated water bottle with a lid so she didn't have to smell it and it stayed cold.

EDIT: I see you said he's having a capsule endoscopy soon. That's good - that will let you know how things look on the inside. Ultrasounds aren't the most accurate tests for Crohn's - generally MREs are used to look at the small bowel (or pillcams/capsule endoscopy) and scopes to look at the colon and terminal ileum and stomach and duodenum.
 
He has been on Humira for 6 months (he hates it and I hate it) and I am looking into have him do een for a few weeks.
Click to expand...

As for the internal... I don't know how he is doing. I got an ultrasound and the capsule imaging order. The docs said we can test him those whenever so I was thinking of saving them for like the day before we start een and then order them again for after een is concluded. Probably will get some blood/stool tests for before and after too. Thinking of starting a separate thread asking folks what tests to get for a comprehensive view. Our primary is fantastic so she will order what our GI doesn't order but will be good to have. Last time we did stool test our primary added a bunch on top of our GI's so we did 7 stools. Also each GI orders different things (which is very interesting) so I am collecting test names and our primary just orders this super set of tests.
Click to expand...

EEN is typically used to induce remission. A few weeks isn't really going to induce remission - typically it's done for 6-8 weeks. Sometimes inducing remission using EEN allows a biologic like Humira to work better by giving it a "boost" - the EEN induces remission and Humira maintains it. It is 100% formula - no solid food. Some GIs allow some solid food to make it easier for kiddos to tolerate - so you can do 80-90% formula and 20-10% food.

You mention multiple GIs - second, third and fourth opinions can be very helpful, but does he have a primary GI who is directing his care? He should have one. Your GI is the best person to judge which tests need to be ordered regularly, not your primary care doc. Typically they order a CBC, CMP (metabolic panel), CRP and ESR (inflammatory markers) and Fecal Calprotectin. Sometimes iron studies, Ferritin and Vitamin D and Vitamin B-12 to check for deficiencies. And Humira levels and antibodies - those are really important because if he has high levels of antibodies, then you probably need to switch meds.

To get a comprehensive view of his bowel, you really need scopes and some type of small bowel imaging (MRE or capsule endoscopy). An ultrasound isn't as accurate as an MRE or pillcam. That will tell you if Humira is working at all. If there is some improvement, you may need to increase his dose. If there's absolutely no improvement or not enough or he's worse, then typically you'd switch to a different med.
 
Couple of points:

1 - semi elemental vs elemental etc - there is no difference as to inducing remission or "working". It has more to do with what the child's tummy will tolerate. When O was younger she could use Boost or Ensure. This last time around she has to use peptamen. Different people have different theories as to which one to try first. Boost and Ensure are the most palatable. Pepatamen is like drinking dirty socks according to O.

2 - Personally, if the RD has said they wouldn't suggest Kate Farms right now, I would go with their recommendation. They are the experts, read the studies, and have loads of experience. The worst thing to do would be to invest 6-8 weeks into EEN withKate Farms, have it not work and then have to redo it because they will blame the formula.

3 - In terms of whether or not to start, personally, I would want to know for a fact that his weight loss is attributable to Crohn's inflammation before I asked him to take on such a task. If his inflammatory markers are improved and his imaging is good, then the weight loss could just be due to intake and all that is needed is supplemental EN and some good work with the RD to increase calories etc.

4- Stanford has some sort of special ultrasound technology that is supposedly very good at seeing Crohn's inflammation. There is a very specific doc who does it also. So while I agree in general ultrasound is not useful, if they are talking about sending him to that special doc then it might help.

Did you ever get his latest fecal cal and blood markers? Also curious about Humira levels.
 
Pepatamen is like drinking dirty socks according to O.
Click to expand...
My daughter said Neocate was like drinking stinky feet 😂. She was ok with Peptamen - said it tasted medicinal but got used to it. But still couldn't drink enough to gain weight. Our GI preferred semi-elemental or elemental formula for EEN or even supplemental EN for Crohn's patients. She did let M try polymeric formula, but that caused diarrhea for her so we had to go to semi-elemental.

In terms of whether or not to start, personally, I would want to know for a fact that his weight loss is attributable to Crohn's inflammation before I asked him to take on such a task. If his inflammatory markers are improved and his imaging is good, then the weight loss could just be due to intake and all that is needed is supplemental EN and some good work with the RD to increase calories etc.
Click to expand...
I agree with @crohnsinct - if he's not inflamed, then I would go with supplemental EN vs. EEN. Not eating solid food is HARD, especially for teens who want to fit in. My daughter tried it at 16 and got very depressed. Later on, when she was 18 and 80 lbs, she did about 85% formula and 15% food. That 15% was enough for her to eat something small twice a day and she found that a LOT easier. She is 5'2 and her RD was surprised at how many calories she needed to gain weight - she needed 2400 before she gained.

About a year ago, she had to do EEN (100% formula - no solid food at all for 16 weeks) and that was very hard on her. We tried to cook outside as much as possible because even smelling food was hard. And she didn't sit with us at the dinner table - she did something so she was distracted.
 
my little penguin said:
How is he doing pediasure ??? I thought he was lactose intolerant???
Pediasure is milk based polymeric
It is not lactose free

Also did you keep a food log ? How many calories a day is he getting ???
You stated each Gi is ordering different things.
Do you have a single Gi you have decided on to follow his care ?
You need one Gi
Not more than one
Is your Gi ordering the een for you ?
Click to expand...

The dietitian said that the milk is so processed that it's not a problem for people who don't do well with lactose.

Nah, I am not keeping a food log (I do for other things) since I've been preparing food for him forever so I know how much he is taking in. If his intake is not dropping then he should not lose weight.

I have 3 outstanding professionals in the GI space and 1 primary care who is very involved (because of us, she started researching on Crohn's). Our first one is our GI, the second one whom our primary insisted on sending our case to for a second opinion said to me off the bat along the lines of "if you were in Europe right now, you would be hooked to some formula, then drugs if een does not work. US is a medication-centric country." How can I let her go? No way. A doc who is honest with communications and shares that the US way is not the only way is a gem (I want to go grab a beer with her :)). The third one... I had to do some weird things to track him down and beg him to give us his opinion. He responded my request with such grace and because of his opinion our GI did add some stuff to our treatment and sent monitoring tests for when I am ready. He gave me his direct email so I continue to ask for his opinion and he always responds quickly. Not going to let him go. :p Then there is our primary who has a different perspective on "healthcare" so she would add tests that she deems will get a comprehensive view of his overall well-being. Our first GI is "the GI" but I am speaking with all of them because I learned different things from them. This is a very unchartered territory for me so I need different perspectives.

Why do they order different tests? Most of the tests are common but because of their background, training and experiences they will have different areas of focus/concerns. Just like everyone on this forum, due to varied experiences, each offers different, yet extremely valuable lessons and reminders.

The dietitian orders the een, not the doctor, at least in my case. :)
 
O.K. wait…THE GI is the female doc at Stanford right? I know the GI you tracked down is O's GI. The "honest" GI is at a different center right?
Our experience at Stanford is that the GI prescribes the EEN as a therapy and then the RD handles the logistics (ordering supplies etc) and feeding advice etc.
 
crohnsinct said:
O.K. wait…THE GI is the female doc at Stanford right? I know the GI you tracked down is O's GI. The "honest" GI is at a different center right?
Our experience at Stanford is that the GI prescribes the EEN as a therapy and then the RD handles the logistics (ordering supplies etc) and feeding advice etc.
Click to expand...

Correct. The second opinion one is at a different center and the third opinion is O's GI. 😸

Maybe the difference is we will be drinking instead of using the tube? You think that's the difference? The dietitian said to let her know which brand by end of this week after discussing with my son then she will get the ball rolling.

Irrelevant detail: I just had my 3rd Kate Farms. I am in so much trouble 😭 I just ordered two boxes for fear we will run out.

Disclaimer: I have no affiliation with KF other than me giving them my money for no good reason!!
 
You really need to know how many physical calories he is getting
Not if he is intake is his usual
Higher inflammation means ridiculous amount of calories
Especially in teenage boys
In Ds case 2600 calories at 50 lbs (age 7 ) and was still losing weight
So then and there Gi knew things were not good
Teen boys can need an excess of 3000 calories a day to maintain the ridiculous amount of weight /growth that happens from 13-16 even without inflammation
Food logs are needed if they are losing weight



keeping three good Gi ‘s sounds great
But you need to have just one
Since they will never agree
Ds has two currently
One he saw from age 6 to 15
We moved

The other from 15-18
The primary Gi (15-18) handles all of his care - labs /meds
But Ds will move closer to the Gi (6-15) for college next fall and will be nice to have an emergency doc close to college campus just in case
Even though it’s a just in case doc
Gi Still does not agree on everything primary Gi is saying/doing
Then it really becomes and issue and your not a compliant patient because Ds can’t listen to both


My oldest non ibd kiddo is severely lactose intolerant-anything that has any milk protein in any form
These make him sick even though it states should be ok for lactose intolerant on the label
Just depends on the level of lactose intolerance

Some kids with minor might be ok
 
Wanted to add at that age growth should be really rapid but it has a short window (13-18 some around 19)
Kids who are losing weight do not grow
Growth plates close and growth stops
Please keep a food log

also can pin point of other issues are going on
Ds had gastroparesis from duodenum inflammation over the years
Inflammation went away but his stomach emptying was slow
He is much better now and no longer needs meds to make it empty faster
Just eats lots of small meals instead
 

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