Very worried - Possible Crohn's diagnosis for my 9 year old daughter

[Teja_99]

Hello All - I am from India but I am working in the US on a work Visa for the past 2 years. My 9 year old daughter has not gained weight over the past year. During her annual visit with her pediatrician in July this year, the pediatrician ran some blood work. She is anemic, has CRP of 12 and ESR of 25. She also has elevated Tissue Transglutaminase AB of 15 and Immunoglobulin A value of 287. The pediatrician was suspicious that she has Celiac disease and referred us to Pediatric Gastroenterologist for further evaluation.

The GI doctor suspected Crohns and recommended endoscopy and colonoscopy. We completed endoscopy and colonoscopy about a week ago and we have a follow-up appointment with the GI doctor in 2 weeks as the GI doctor is currently out of the country.

The abnormal findings from endoscopy and colonoscopy (that we got from our pediatricians office as they sent a copy of the report to our pediatricians office) are as follows. While not sure, the pediatrician thinks the endoscopy and colonoscopy are inconclusive and she told us to wait to talk with the GI doctor.

"Duodenum Bulb Biopsy
- Duodenal mucosa with Villous Blunting and no Significant increase in Intraepithelial Lymphocytes

Recto Sigmoid Biopsy
- Mildly active chronic colitis

Comments

The findings suggest IBD but do not allow to differentiate between Crohn's or ulcerative colitis, ASSUMING THAT OTHER CAUSES HAVE BEEN EXCLUDED CLINICALLY

The distal duodenal findings are non-specific and follow-up with celiac serology could be considered if clinically indicated"

We are extremely stressed and worried. Does this indicate Crohn's diagnosis or Celiac diagnosis or Ulcerative colitis ? Can some of you please advise? We are alone with very few friends around and extremely worried.

Please help us.

 

[scottsma]

I'm so sorry,it's not a nice situation to be in for your daughter or yourself. There are many on the forum whose children have been diagnosed
and I'm sure someone will be along soon to advise you and offer support.

 

[Pilgrim]

Hello. It is such a stressful time for you and my heart goes out to you.
I am no expert at interpretation of results. However, I would think that the combination of activity in two very separate areas of the GI system may indicate Crohn's disease.
My daughter has Crohn's disease and had similar results at her last scope with villious bunting and duodenal disease as well as mild activity elsewhere. That said, her GI continues to run a blood test for Celiac every single year. I am not sure why, but I will ask.
I would *think* that Ulcerative Colitis is ruled out by the duodenal activity.

 

[my little penguin]

Definitely wait for the Gi
Most pathologist put that catch all “Under right conditions etc..” statement
They also won’t check this is crohns box unless they find non caseating granulomas on the biopsies as definitive crohns
Which is very annoying since only 30% of crohns patients have granulomas on biopsy .

It’s a scary time
Ulcerative colitis is continuous so no healthy spots in between . So that is less likely by what you posted (not a doc though just a mom )

Celiac can cause blunting … but my kiddo had blunting with no celiac -they check on scopes all the time just in case
You can be sensitive to gluten but not have celiac .

My kiddo was dx at age 7 (now almost 18 )
It’s very scary not knowing and then knowing as well
Most do a MRE (mri with entography and capsule endoscopy) after scopes do they can fully document the disease .
Then next steps
Are steriods and /or exclusive enteral nutrition (een)- formula only no solid foods for 8 weeks
Such as peptamen jr ,pediasure or kids boost depending on the Gi .
If your not seeing a university based pediatric Gi
Now would be the time to get a second opinion at one and switch .
Kids with crohns are difficult to treat
Also understand pediatricians have next to no training in crohns or celiac so we leave the driving to the Gi specialist on that one

While on een or steriods
Most start a maintenance medicine to take over so you can stop the steriods /een
Lower level would be methotrexate
This has been used for decades in juvenile arthritis patients as young as two and tiny doses compared to doses used as chemo so …
My kiddo has been on it for years no issues
Most Gi in the us don’t use 6-mp/aza /imuran anymore due to lymphoma risk .

Some go to biologics which sound scary on paper but are the most effective but have a long list of POSSIBLE side effects .
We have found biologics gave the most relief
With least side effects for my kiddo
On remicade ,humira and now Stelara

My kiddo currently takes Stelara and methotrexate.
And has since 2017

Tagging @Maya142

One key thing is while your child is growing keeping peptamen jr going even as a supplemental (2-3 a day ) as long as possible
Kids with Gi inflammation need lots of extra calories to grow
My kiddo stopped gaining weight for two years )age 5-7 ) before the ped would refer us to Gi
I eventually just took Ds on my own To Gi

 

[crohnsinct]

Hi there! I am sorry you find yourself in this position. It can't be easy away from home, friends and family. But we are here to be your new friends if you need us...which I hope you don't.

Your fear is totally understandable. We have all been there but I would like to tell you that IF it is IBD, that you will adjust and learn and your daughter will go on to live a very full and happy life. I have two daughters with Crohns. One has mild to moderate disease and was diagnosed a similar way your daughter was and the other has very severe disease that was diagnosed in a dramatic fashion...her colon is a drama queen. Both girls have been very active varsity athletes in high school, been honor roll students, active members of the church youth groups and in many other club activities. They are both in college now and one of them is a college athlete. My daughter with severe disease has been dealing with a 5.5 year flare but even that has not stopped her from having a great college experience, graduating and no attending grad school. She was even a 4 sport athlete in high school!

The key is to find the treatment that will work. It might not be the first one but there are several therapies out there and many ways to tweak each of them.

The good news is that IF this is IBD, you are catching it early and your daughter isn't suffering at the moment. The earlier you catch the inflammation and control it the better your chances at changing the future course of the disease. So kudos to your pediatrician for recognizing the signs that something wasn't right and kudos to you for getting your girl to a GI.

Try not to get ahead of yourself. The report said "suggestive" of Crohn's but it could still be other things. Take it one day at a time and wait to hear what the GI has to say. After you meet with the GI we will be here for you to help you process what they said and give you feedback on the various therapies.

Also, some people do actually have both Crohns and Celiac so maybe just be prepared for that. The treatment for Celiac is as simple as removing gluten from the diet (simple but not necessarily easy). You will learn all the hidden gluten traps. If it is Celiac and IBD there is a diet that has helped some with IBD that involves giving up all grains (SCD) and that could kill two birds with one stone, but wait to look at that until you really know what is what.

Good luck at your appointment!

 

[crohnsinct]

OH! Wanted to add not to get hung up on the differentiation between UC and Crohn's. It doesn't much matter at this point. The treatments are relatively the same. Rather disease location matters a bit as some drugs work better in one location over the other (small bowel vs colon) and some work in both. The only time it is very important to know for sure is when colectomy is being considered as if affects whether or not you need to stay on meds after surgery and reconnect options BUT such surgical interventions have been decreasing with the introduction of biologics and the early diagnosis made in kids these days.

 

[Teja_99]

Thank you very much for sharing the details. This is very helpful.

Let me first sincerely apologize for the delayed response. The last 4 weeks were extremely stressful for us. I and my wife had several sleepless nights. Reading forums especially Reddit was amplifying our anxiety. We were in denial for a long time. But, we have now accepted the fact and we are determined to do what it takes from our side so that our child can accomplish her goals and live her life to the fullest.

The progress over the past month is as follows.

11/01 - We read about Crohns Disease Exclusion Diet in one of the brochure's in out GI's office. We had a meeting with out GI's dietician to get the details. We started our child on Crohns disease Exclusion Diet until we figure out the diagnosis and treatment. Our child is getting 75% of her Calories from Crohns Disease Exclusion Diet and 25% of her Calories from Ensure Clear. Unfortunately, Modulen IBD is not available in US and GI's dietician told us it is okay to replace with Ensure.

On 11/12 - We had a follow-up appointment with the GI doctor. She told us that our child has a mild form of Crohn's. She commonly see's Villious blunting in Crohn's and she ruled our Celiac. She gave us 2 options either to start her on prednisone 45mg for 6 weeks and determine a maintenance drug after 6 weeks or get an MRE done to see if there is additional inflammation in the small bowel before starting with the treatment. We opted for the MRE as we want to understand the full extend of the issue. I would like to thank each of you for your feedback because it helped us prepare for the conversation with the GI. We also requested the GI to forward our child's documents for a second opinion with another GI.

On 11/22 - We completed the MRE. The report says - "There is 15 - 20 cm wall thickening in the middle of small bowel and active inflammation. There are no fistula's or abscess". We now know the full extend of the inflammation.

On 11/24 - We had a Telephonic conversation with our GI. Based on MRE, Endoscopy and Colonoscopy, she thinks it is mild to moderate Crohns and no further testing is needed.

She gave us 2 options
Option# 1 - Start her on Prednisone for 6 weeks for remission and move to Remicade for maintenance
Option# 2 - Start her on Prednisone for 6 weeks for remission and move to Methotrexate for maintenance
Our GI strongly recommends option# 1 primarily because Remicade is safer and more effective when compared to Methotrexate
We requested for a weeks time and told her that we will think through both options and call her office.

On 11/24 - The same day, we visited another GI for a second opinion (at a children's hospital). The new GI reviewed our Childs records and also confirmed that our child has mild to moderate Crohns. She recommended Remicaid. She told us that Remicade can be used for both remission and maintenance. She does not see a need to use Prednisone and wants us to avoid using an additional drug.
Our option# 3 - Start her on Remicaide
We requested for a weeks time and told her that we will think through and call her office.

Our child seems to be doing well on Crohns Disease Exclusion Diet. She gained over 3lbs in 3 weeks and overall she is happy. We mentioned this to both the GI's but both of them do not think diet will make a difference and we should get on medications at the earliest. However, they have agreed to check her inflammation markers once again (CRP and Calprotectin) to see if we can complement her medications with diet or if dietary restrictions are not needed.

We have 3 options in front of us
Option# 1 - Start her on Prednisone for 6 weeks for remission and move to Remicade for maintenance
Option# 2 - Start her on Prednisone for 6 weeks for remission and move to Methotrexate for maintenance
Option# 3 - Start her on Remicaide

Based on your experience, can you please help us with the following details?

1. Which of the 3 options would you think is the best?
2. Can using prednisone for 6 weeks cause delays in puberty?
3. Can using prednisone for 6 weeks stunt growth?
4. Is Remicade effective in getting our child to remission or is it good as a maintenance drug?
5. Which of the two drugs prednisone or Remicade is better at inducing remission?
6. Should we try Prednisone + Methotrexate before moving to biologics?
7. Which of the two drugs - Remicade or Methotrexate is more safe?
8. Do you suggest any dietary restrictions in addition to help with the effectiveness of the medication?

Truly appreciate your help !

 

[Maya142]

So Remicade and/or MTX do not kick in immediately - that's why Prednisone is used as "bridge" until the maintenance medication kicks in. Another option as a bridge is EEN - Exclusive Enteral Nutrition. It's formula only, for 6 to 8 weeks, to induce remission. There are 3 types of formula - polymeric, like Ensure or Boost, which taste the best. Then there is semi-elemental, like Peptamen Jr and Pediasure Peptide, which are partially broken down, so they are easier to digest but are definitely less palatable. Then there are elemental formulas like Neocate and Elecare, which are broken down completely into amino acids. Most kids find these VERY hard to drink - my daughter absolutely could not stand them. But most kids actually tolerate semi-elemental formulas or even polymeric formulas well and so elemental formulas aren't usually necessary. Some GIs are fine with kids doing EEN using Ensure or another polymeric formula while others, like ours, wanted us to use a semi-elemental formula (we used Peptamen Jr).

EEN can be done by drinking the formula/shakes (they're often called shakes) or by using a feeding tube. Normally kids use an NG tube that goes from their nose into their stomach and you use a pump to do feeds. The tube can stay in and then is replaced once a month usually or it can actually be inserted every night by the child and the feeds are then done overnight, and they pull it out before school. Kids as young as 6 or 7 were taught to do this at the hospital we went to, though it is much more common with teens. My teenage daughter used an NG tube after trying to drink shakes. She found using a tube so much easier that she said she would never go back to drinking!
EEN can be done as 100% formula and no food but many GIs now allow 80-90% formula and 10-20% food to make it easier for the child.

So now to get to your questions -
1. If it were my child, I would choose Remicade, probably with Prednisone or EEN to give it some time to kick in.

2 and 3. I don't think so but I'm not 100% sure on this. Typically growth/puberty issues become a problem if steroids are used long-term. Not for weeks. But to be honest, you should ask your GI or consult an endocrinologist. But I would not be worried about steroids for 6 weeks.

4. Remicade is a maintenance drug but it does work to induce remission in many cases. But it's not overnight - usually it takes 6-12 weeks to see a significant response. I will tag some more parents who may be able to tell you more - @crohnsinct, @my little penguin @pdx @Tesscorm

5. Prednisone is most commonly used to induce remission but I do not know the actual statistics. Biologics certainly can induce remission but it takes longer and ideally you want to get inflammation under control ASAP, before it causes complications.

6. I personally wouldn't, if given an option to go to Remicade. Remicade works better and faster and comes with fewer side effects. My daughters have been on biologics for 12+ years and the only thing I regret is not putting them on biologics sooner. They both have inflammatory arthritis (the younger one has Crohn's too) and both suffered permanent joint damage (which has caused chronic pain for both of them because we did not treat them aggressively enough. Biologics sounded really scary, but we learned the hard way that uncontrolled inflammation is actually a lot scarier. My younger one's arthritis actually became severe because we did not treat it in time and so when she was diagnosed with IBD, which was mild to moderate, we chose to treat it aggressively with Remicade and Methotrexate and thankfully, it has stayed that way and she has had no complications due to IBD like strictures, abscesses or fistulae and has avoided surgery for Crohn's.

7. Both are safe drugs, but to me, biologics like anti-TNFs seem safer. They're more targeted than immunosuppressants like MTX or Imuran/6MP which tend to suppress more of the immune system. Someone once used the analogy of a pan catching fire in the kitchen - you could either use a hose and soak the whole house (MTX) or use a fire extinguisher (biologics) and put out the fire without soaking the rest of the house. That said, my daughters haven't had any serious side effects despite being on MTX for years and honestly, most kids don't. But it can be harder to tolerate - it can cause nausea or even vomiting, fatigue, mouth sores etc. and so is usually given on the weekend so the kiddo has the next day to rest and doesn't miss school. There are lots of tips and tricks to deal with MTX side effects and most kids tolerate it just fine. But side effects are more common with MTX than Remicade, in my experience. My daughters have been on MANY biologics (9 or 10 between the both of them) and had no side effects at all with every biologic except one (not Remicade). My younger daughter really struggled with MTX when she was younger and had to stop it. But she re-tried it almost two years ago and now for whatever reason has no side effects at all.

8. We haven't really done diets except trialing gluten free (did not work for my daughter) and EEN/supplemental EN. I'll tag @Pilgrim since she has used diets for her daughter, as well as @crohnsinct and @my little penguin who have done CDED.

Now some unsolicited advice - try not to worry too much. Remember that the side effects posted online for MTX are generally for the cancer dose, not for the teeny-tiny doses used for IBD. Kids with IBD live full lives and you will find your "new normal."

 

[Pilgrim]

I would choose Remicade plus diet. In our experience (2 kids with Crohn's) the CDED can help calm things down in order for the biological drugs to work well.

Prednisone just seems to have a lot of annoying side effects which disrupt life. Methotrexate also has annoying side effects. Biologics really seem to be the most effective way to get to remission without nausea, swelling, mood changes, and so on. They work really well.

For logistical reasons we chose Humira over Remicade. Same type of medication, different delivery mode. Remicade has the advantage of dose adjustment by weight which is great. It's probably the best drug for Crohn's overall.

I would actually recommend the first stage of CDED with 50% formula to really help her while you move to medications.

 

[Teja_99]

Thank you very much @Maya142 and @Pilgrim for the detailed response. This information is extremely helpful for us.

Based on your feedback, Remicade seems to be the best option for us. Our GI's are also recommending Remicade. We will call our GI's office on Monday to convey our decision and request them to start with the pre-approval process for Remicade.

For some reason both of the GI's I have consulted are not supportive of CDED or EEN. I am seeing very promising results on YouTube and this is the first line of treatment for mild to moderate pediatric crohn's in Canada, UK, Europe, Israel and several other countries. I can request our Pediatrician to refer us to a new GI who is more supportive of EEN or CDED but I am worried we will delay our child' treatment by an additional 2 or 3 weeks as we wait for an appointment. With each day passing I am worried that we delayed our child's treatment by another day.

We will request our GI once again to let us do CDED for 12 weeks where she can check our Childs Calprotectin levels intermittently . If things are improving we will complete phase-1 and phase-2 of CDED and start phase-3 along with Remicade. But I do not think our GI will support us. I have great respect for our Pediatrician and GI. They accurately diagnosed our child and guided us with the right tests. But the moment I mention CDED or EEN, our GI gets very defensive. She is very reluctant to talk further on diets and pushes us towards Prednisone. She tells us that there is very limited data backing diets, diets don't work and we are delaying treatment.

We will try our best to use CDED as a bridge while we wait for Remicade to kick in. In the worst case, we will use Prednisone as a bridge.

We live in CT. If anyone reading this post is aware of pediatric GI's in CT, MA who are supportive of CDED or EEN - could you please let me know?

 

[Maya142]

Well, if you would be willing to drive to Philly for appointments, I can tell you that CHOP has an excellent IBD program and they do use EEN - my daughter was seen at CHOP for 7 years or so. They have also done a number of studies about diet and would work with you

In MA, have you gone to Boston Children's?

There are a couple of parents on here who know GIs in that area. So give it a day or two and I am SURE they will respond (I already tagged them in my first post).

We will request our GI once again to let us do CDED for 12 weeks where she can check her Calprotectin levels intermittently . If things are improving we will complete phase-1 and phase-2 of CDED and start phase-3 along with Remicade.

Do you mean that you would like to try CDED before trying Remicade? Because I would not rely on diet alone to control the disease. I would definitely do it in conjunction with meds, not instead of them. I know phase 1 and phase 2 of CDED are meant to induce remission and it's possible that they might. But I would start Remicade ASAP - it takes a while for it to work, so it doesn't make sense to delay starting it.

Remicade will also help induce remission - it just takes longer than Prednisone, which is why your GI wanted to start your daughter on Prednisone. I'm a bit confused though - is your GI suggesting you do Prednisone for 6 weeks and then add Remicade? Because that is NOT normal.

Normally you start the maintenance medication at the same time as the steroids. For the first 6-8 weeks (or more depending on the kiddo), while Remicade is kicking in, steroids help control the disease and hopefully induce remission. But Remicade will have some effect during that time - there are some kids who feel dramatically better in days (or even in hours!). Others take weeks, and others take months.But the point of the steroid/EEN/diet bridge is to cover the Crohn's and reduce inflammation dramatically (and hopefully induce remission) while Remicade is kicking in, if that makes sense.

For example, my daughter was put on Remicade when she was diagnosed, and at the time, she had a lot of belly pain. After the first infusion, she was still in a lot of pain, so her GI put her on steroids. They helped a lot - the belly pain got better since they were controlling the inflammation. But after 10 weeks on Remicade and after 4 infusions, she felt MUCH better - mostly back to normal! And 8 months after starting Remicade, scopes showed her colon looked perfect and her TI was only mildly inflamed - all the ulcers had healed and bleeding stopped.

The whole process did take a while and we did have to change her dose and frequency of infusions before Remicade worked for her. But if we had waited 6 weeks to try CDED, and it hadn't worked, she would have been in pain for much longer while we waited for Remicade to work - a total of 16 weeks or more.

In your case, you seem to want to use CDED to induce remission (if I understand correctly). If your doctor agrees, that's fine, but I would start Remicade ASAP so you get inflammation under control before it causes complications.

 

[my little penguin]

Boston childrens would /should support een /cded if given with remicade

 

[Maya142]

I wanted to add - I may have totally misunderstood what you were saying about CDED phases 1 and 2 since I don't know much about the diet, but just wanted to clarify that a bridge is started at the same time as the maintenance med.

 

[my little penguin]

Ok my opinion
Keep cded , but add remicade now .
Has her inflammatory markers decreased while on cded (CRP,ESR (sed rate )?
if not then full formula een with peptamen jr for 6-8 weeks
Peptamen jr is the US equivalent of modulen
My kiddo used peptamen jr for een more than once
No food though so that’s tough
Remicade worked well for him
But he developed an allergic reaction after 8 months so moved to humira

second remicade over mtx
My kiddo did step up therapy
5-asa for 30 days
6-mp (imuran) for 8 months
Then mtx for 3 months
Failed them all
Finally after a year the docs tried remicade and he got better for once -stopped vomiting etc..,

he currently takes Stelara and mtx
The mtx is for his juvenile arthritis in addition to Stelara (for crohns and jia )

 

[Teja_99]

@Maya142 - Thank you very much for the details. I may be wrong but the way I understood from our GI is start Prednisone now and add Remicade after 6 weeks. I will call her office first thing Monday morning and confirm my understanding.

I now understand that we need to get our child started on Remicade immediately and we use either CDED or Prednisone to induce remission.

We haven't checked her CRP, ESR and Calprotectin levels after we started CDED. We will also ask our GI to check the values immediately. I will keep you updated as soon as we talk with our GI.

 

[pdx]

I agree about starting Remicade right away, while using either diet or prednisone as a bridge. My daughter used EEN (she actually did 90% EN and was allowed 10% food) as a bridge therapy and it worked very well for her. She did end up needing an increased Remicade dose, though, before reaching remission, and she also ended up needing to use methotrexate too, in combination with Remicade. After your daughter has been on Remicade for a while, it's a good idea to get her Remicade levels checked to see if she needs a higher dose--most kids need more than the initial dose of 5 mg/kg every 8 weeks. My daughter needed 7.5 mg/kg every 6 weeks; that's a common dose for kids.

 

[Pilgrim]

If the GI isn't telling you what food to use, then starting CDED on your own to improve chances for remission doesn't change anything for the GI. You can do it alongside Remicade without any permission.

We found a local registered dietitian who was happy to work with us on the CDED diet. We didn't order any separate labs but did watch improvements with the regular labs ordered by the GI. When you start with more than one treatment it's hard to know what is working. In our case we did strict CDED alongside starting a new drug (Stelara this time) for 12 weeks. Labs improved greatly, we gave credit to the meds and relaxed the diet. Then, labs drastically worsened! For us it seems like both diet and meds together is key. Keeping kids on diets is really challenging. Set a time frame to monitor progress.

We have also done 100% EN in the past (in Canada a front line treatment for pediatric Crohn's). She drank the formula (no tube). She did this twice for 6 weeks each. Psychologically this is very hard but can be done. It did really improve symptoms but symptoms and inflammation return when food is reintroduced. I wouldn't do this without a dietitian.

My guess is your GI just doesn't want you to say no to medical treatment. I feel like you're getting good care from what you've said, and I wouldn't switch doctors in your situation. I would add a dietitian to the team.

 

[Pangolin]

Remicade is generally regarded as safer than methotrexate. Many doctors try to avoid steroids if possible due to side effects.

Remicade alone is likely to be insufficient, so many doctors add methotrexate on top of that. Alternatively, you could use EEN with Remicade. I'm not sure how good methotrexate is by itself, but Remicade is generally regarded as more effective.

That said, I wouldn't recommend starting on Remicade right away. What I would do is start with EEN (maybe with antibiotics, see below), get a good idea of how effective that is, and then add Remicade later.

The reason I would do things in that order is because you want to be able to observe the effects of each treatment individually, so you can know what's working and what isn't. EEN is the safest possible option, and it's also very effective very fast. Obviously it's not something anyone wants to do long-term, but it's a first step to give you more information and more time.

I'd also add amoxicillin and/or metronidazole for a short time at the beginning, because there's often some component of infection going on (remember, there's poop in there, getting smeared over the ulcerations). When my son was diagnosed, he was put on IV antibiotics (due to an abscess), and those also helped stop the luminal pain right away. That is, they were effective against not just the abscess, but also they helped reduce Crohn’s inflammation initially.

So you start antibiotics and EEN right away, stop antibiotics after a little while, maybe 10 or 14 days, continue EEN for a few more weeks, and get some more data on what the current inflammation levels are. Ideally you might get ESR, CRP, fecal calprotectin, and an MRE after EEN for 5 to 8 weeks.

At that point you know exactly how things are going, and then you can think about adding something for long-term control. That's when I would add a biologic like Remicade (definitely not my favorite biologic, but starting there is often required). See if the infusions help, and transition back to normal food. If inflammation keeps simmering and all of the numbers (esr, crp, fecal calprotectin) aren't good, you still have a problem, even if symptoms are mostly ok.

At that point, maybe you add methotrexate, or maybe you go back to EEN, or maybe you try a higher dose/frequency of Remicade, or maybe you try a different biologic, but always try to be aware of the effects of each treatment, getting a good idea of before and after.

I know my approach is nonstandard and some people here will disagree, but I'd say that it's better for avoiding certain common pitfalls (which I have all too much experience with). Just give it some consideration.

Long-term, the goal is deep remission, which is characterized mainly by mucosal healing and intestinal wall thickness normalization, and along with that should be normal lab measurements.

(edit: note that surgery to remove stubborn inflamed parts that just won't heal up no matter what you do can be a good option, and in fact some studies show better long-term results with early surgery, but obviously at this point you want to try some other things first)

(edit2: note that you can start on EEN today if you want to try it. You don't need to wait for approval)

 

[my little penguin]

So my two cents
If you continue with cced or start een you need your Gi to agree .
This is not because you cant change your childs diet on your own - you can
But
Big but here
You need the support of your child’s Gi over many years and if things go well or a flare starts your going to need a Gi who is willing to discuss options with you /your child and work through things that are important to your child or you
Highly recommend second opinion. - either chop /Boston childrens

aa far as keeping up with diet cced or een abd waiting to start remicade
From a science experiment- yes that is the way to go
Only one independent variable changing at a time
Then you know
However your talking a child who is inflamed
The goal is to get the inflammation under control as fast as possible to reduce the amount of damage that is occurring and reduce likelihood of surgery

kids with crohns have a 75% chance of surgery as a risk within 5 years of dx
This number is greatly reduced by using biologics early in dx (last time I looked it went down to 40.%)
It may be a different now
Been doing this over 10 years so it’s less about papers now and more about past experience.

Things to keep in mind
Cced or een can induce reduce inflammation in some (not all ) but these take 6-8 weeks to be effective at reducing it

in the meantime methotrexate takes 12 weeks to be fully effective at maintaining that level of no inflammation

remicade takes 6 weeks as well to be effective

when you combine therapies een /steriods or cced to reduce inflammation at the same time as starting remicade when the een or steriods are done
Then the remicade can take over and you can stop een or cced .

this is very important
Cced is diffcult
Een is difficult as well - my kiddo did it 2-3 times over the years just drinking it

Also remember even if on paper you have planned cced or een or remicade etc… none of that matters if it isn’t effective for your child
Every child is different and there is no right path
It’s having the ability to assess how things are going with your child’s Gi and knowing when the meds are not working - time to change meds

every single med change is difficult because it is unknown how your kiddo will react to the drug

it does get easier
But you need a Gi who you can discuss things with
Who may not agree with you but is willing to listen
It’s a two way communication. That will need to happen many times over the years

also your child will need to feel comfortable around the Gi
Very key

some docs are great docs medically
But personally not a good fit

some start out Rocky but get better over time

talk to your child
Kids are good at reading adults

So no wrong path
Een plus remicade has a proven success rate
Good luck
The first two years are difficult at best
But it does get better
Hugs

 

[my little penguin]

Wanted to add one good thing we did when my kiddo was little (7 at dx )
Was keep him on supplemental formula (shakes )
He drank 3 peptamen jr each day to give his body the extra needed calories and nutrition
Regardless of what meds he was on at the time
It worked
He is now 5’10” and 165 lbs - still growing .
Trying to start shakes when they are older (read teens ) is so much harder -they can’t stand the taste by then and have “teen opinions “
Versus this is something they have always done

 

[Teja_99]

Thank you very much @pdx, @Pilgrim, @Pangolin and @my little penguin for the details. This is lots of detail to process and has helped me in charting my next steps

We will request our GI tomorrow to check my Childs CRP, ESR and Calprotectin levels. If there is an improvement and the values are trending in the right direction we will continue with CDED until we get approval from my insurance to use Remicade/Infliximab. We will also get a second opinion at CHOP or Boston Children's (wherever we get an earlier appointment). We will try our best to get the appointment before starting our child on Remicade.

If labs are not trending in the right direction, we will request our GI once again to see if we can use EEN in place of Prednisolone as it has fewer side effects as a bridge until we get my child started on Remicade. However, if our GI does not want us to take this route and insists we start our child on Prednisolone we will proceed with starting her on Prednisolone. This is primarily because we do not want the inflammation to progress further. We will get a second opinion at Boston Children or CHOP but we will not wait for the second opinion to start her treatment.

I personally think making our child eat healthy is always better. If CDED diet works favorably - we will follow it strictly in addition to the medications until our child achieves remission. We will disclose our diet to our GI. We also bought books on SCD diet / recipes today (as a backup just incase CDED does not work for our child). We will either follow CDED or SCD diet in addition to medications until our child achieves remission.

Today, we had a very emotional moment at home. Our daughter asked if she will be cured completely. She also feels sorry that I had to take so many PTO's off work to drive her for the appointments over the past month. While we put up a brave front, gave her a hug and assured her she will be cured completely and we will get through this, I and my wife are completely shattered inwards.

The stress of not knowing the details and not having any support from family and friends in a new country is adding to our desperation. None of my colleagues at work or any of family members back home heard of Crohn's disease. I would like to thank each one of you once again for guiding us in the right path. I see each of you as guardians in a very stressful phase of my life.

 

[my little penguin]

As far as taking time off work
In the beginning in the US any employer with more than 50 employees and more than 12 months of working there
Qualifies for FMLA (family medical leave act )
It gives you up to 12 weeks off (unpaid ) from work each calendar year
It can be taken intermittently (by the hour ) or continuous a week at a time etc..,
Your HR dept will have information on which company they use for fmla
Your child’s doctors can fill out the forms
It protects your employment
Caring for a child with crohns is covered

please do not tell your child you can cure this disease
It’s a life long issue
Meds can make it a minor blip to deal with
Sometimes
But others have a more difficult path
There are coloring books and paperback books to help her understand
Toliet paper flowers is one book

Another book is ibd and me
https://atriumhealth.org/documents/lch/gi-support-group/ibd-and-me-activity-book.pdf
that is from ccfa
Crohns and colitis foundation has activities for kids )camps and walks ( obviously not during pandemic but …)

buzzy4shots
Is a bee that you can get that reduces pain from iv sticks /blood draws - ours has worked for 10 years -he hasn’t needed it in a long time but still works

emla cream for numbing the site for iv also helps for remicade infusion

cced is healthy (my kiddo did it for a year )
But limiting
Scd is also healthy but more limiting and most kids lose weight on it - chop no longer recommends scd due to the weight losss kids have

chop recommends a Mediterranean diet for their kiddos with as much organic and unprocessed food as possible

my kiddo mostly sticks with this but due to life threatening food allergies things get tricky (fish and tree nuts are out )

be prepared things change drastically from age 9 to 12
12 year old have a lot more say in treatment at the doctors

other tips never promise anything
Do not tell the kiddo they won’t draw blood ,be an iv or no admission /ER trip /procedure etc…

Do be honest (they know ) that you don’t know what will be coming but explain what might be if the kiddo does better knowing ahead

there is also shot blocker
A yellow disc thing that blocks the signal of the needle stick around the skin

 

[my little penguin]

https://www.buzzy4shots.com.au/pages/how-to-use-buzzy

 

[my little penguin]

https://bionix.com/shotblocker.html

 

[Teja_99]

Thank you very much @my little penguin

There is no progress from my side. We reached out to our GI's office and we are still waiting for a call back from her. I will follow-up once again tomorrow if I do not get a call by 10:00am.

We received a letter today that our GI is leaving the practice end of year and they are closing the facility altogether. She gave us two other GI's to chose from. This is frustrating and causing more delays from us. There is no mention of closing the practice or our GI's aspirations in any of our prior meetings.

 

[Maya142]

Today, we had a very emotional moment at home. Our daughter asked if she will be cured completely. She also feels sorry that I had to take so many PTO's off work to drive her for the appointments over the past month. While we put up a brave front, gave her a hug and assured her she will be cured completely and we will get through this, I and my wife are completely shattered inwards.

I know, as parents, we all want to "fix things" for our kids, but I still wouldn't promise a cure. I would, however, explain that you and the doctors are going to do everything possible to get her feeling well. And I would definitely assure her that 1) it's not her fault and 2) she shouldn't feel bad that you have take time off work to take her to appointments - that's what it's meant for. She is such a sweet kid to be worrying about that!!

One of the things that helped my daughter a lot was seeing a psychologist who specializes in kids with chronic illnesses - helping them to come to terms with the illness and helping them learn how to cope with it - with the blood draws, the infusions/injections, the appointments and not feeling "normal" like other kids - especially when having to do EEN or CDED. My daughter was VERY against seeing a psychologist, but thankfully her GI absolutely insisted. After a while, she found that the appointments really helped her and started reminding me to make them for her! I can honestly say that they made a world of difference for her.

If labs are not trending in the right direction, we will request our GI once again to see if we can use EEN in place of Prednisolone as it has fewer side effects as a bridge until we get my child started on Remicade. However, if our GI does not want us to take this route and insists we start our child on Prednisolone we will proceed with starting her on Prednisolone. This is primarily because we do not want the inflammation to progress further. We will get a second opinion at Boston Children or CHOP but we will not wait for the second opinion to start her treatment.

I think you have a good plan but I would definitely tell your GI about EEN/CDED and not just start it - you want to work with your GI and they will need to set you up with a dietician to advise you, so you can make sure your daughter is getting the right number of calories for her age/size/weight and enough nutrients. And they may be able to work in some "cheat days" for a class party, for example, so your daughter doesn't feel left out or may be able to suggest alternatives to foods she misses, if she's doing CDED.

EEN and a restrictive diet like CDED can be very hard on the child - my daughter got very depressed when we first tried EEN, and so we did supplemental EN for her (food was allowed, but she always got some proportion of her calories from formula - like 60% formula/40% food or even vice-versa). In her case, with supplemental EN, we were just trying to get her to gain weight and to reduce belly pain and not to induce remission. But be ready for it to be hard, especially in the beginning. And if your child is really miserable, sometimes the lesser of the two evils is to use Prednisone. If she's only on it for 6 weeks, I really don't think it will impact her growth and since steroids make you hungry, she may even gain weight on it.

One of the best things I heard when my daughter had just been diagnosed is that "it's a marathon, not a sprint." Your child is not going to get better overnight. Treatments take weeks to months to kick in. The first year is generally the hardest, as you all get used to your new normal. But you WILL find the right combination of medications or of meds and diet eventually and suddenly your life will not be consumed by Crohn's anymore. Your daughter will go to school, play with her friends, maybe play sports or dance or do other extracurriculars...she will get to be a kid. Just give it some time.

Also, you mentioned earlier it feels like if you're in a new country - well, there's a pretty famous piece called "Welcome to Holland" which is written for parents of kids with special needs or chronic illnesses. It's worth a read: https://www.dsasc.ca/uploads/8/5/3/9/8539131/welcome_to_holland.pdf

 

[Maya142]

I wanted to add - if your GI is leaving, then it may be worth considering switching care to Boston Children's or CHOP. Sometimes you do have to drive for the best care. We always drove an hour and a half to CHOP (each way) and two hours or more each way to see my daughter's pediatric rheumatologist. It was worth it, for the care we received. At first you will probably see the GI every 3 months, but in the future, once she's stable, you may be able to move visits to every 4-6 months. Just something to think about, especially if you want to try EEN and the CDED - big pediatric IBD centers will have the most experience and info about diets. And you definitely want to feel comfortable with your GI and you want your child to trust your GI - that's important. So if things feel off, don't hesitate to switch or get a second opinion at the very least.

I also wanted to add - like @my little penguin said, get your child used to shakes young, because once she's a teen, it's going to be a whole lot harder to get her to do things she doesn't want to. Especially if you plan to use semi-elemental shakes like Peptamen Jr. or Pediasure Peptide - they don't taste great, but kids can get used to them. My daughter ended up using a feeding tube for supplemental EN but before that she did try drinking Peptamen. She hated the taste at first, but was able to get used to it after a while. However, she still couldn't drink enough to maintain her weight, much less gain. Also, while a feeding tube sounds very scary, it's much less intimidating than it sounds. It's not a bad option, if she cannot manage to drink the shakes. Sometimes a reward system helps, especially for younger kids.

Also, the bigger children's hospitals have support groups for parents and kids/teens with IBD. Or at least ours did. You can also reach out to the Crohn's and Colitis Foundation - camps have been on hold because of COVID, but next summer hopefully they will be back. It can really help kids to attend camp, since then they don't feel different or alone.

Hang in there and good luck!