New Here - not sure what to do

[MamaHenn]

Hi all, I'm new here. Our 10 year old son was just diagnosed with Crohn's after an endoscopy/colonoscopy this week. A bit of background, our quest began last year when we noticed he wasn't eating as much. Routine blood tests at the pediatrician showed that he was anemic which led us to a hematologist who put him on iron and then did testing for Thalessemia. End result of that was that he may have had an undected form of Thalessemia and that we could stop iron (his levels did go up while on iron). Our pediatrician then sent us to an endo b/c he still wasn't gaining weight and his iron levels were not where they needed to be (but were not too low). Endo did further testing and found that he was low in protein and whatever marker they test for that shows inflammation was high. We were then sent to a GI.

My son has never had any diarrhea or vomiting. He has never complained of any food bothering him, he has never complained of pain or cramping and seemingly does not have any of the "normal" symptoms associated with Crohn's. His only current "symptoms" would be that he sometimes (but not always) feels full after eating, is not gaining much weight and his low levels of protein/hemoglobin. His colonoscopy did show some ulcers and inflammation and the dr. has given the Crohn's diagnosis.

I know we are just learning about this and have a lot of research to do but we're very concerned with the dr.'s plan of attack so to speak. She is suggesting steroids (entocort after I questioned prednisone) and then either 6MP (her preference) or Methotrexate. I asked about changing his diet or working with a nutritionist and she said it was not necessary.

I'm seeking some advice from people who have been there/done that. I realize that the above medications have helped numerous people and I realize that they are necessary BUT considering that my son is not showing any of "normal" signs of Crohn's just yet, does 6MP and Methotrexate seem harsh as medications to start off with?

Thank you in advance for any thoughts/advice.

 

[CrohnsKidMom]

Welcome to the forum, but sorry to hear of your son's illness. My 9 yo son was dx'd almost a yr ago at age 8. His symptoms were anemia, some weight loss and loss of appetite, abdominal pain and bloating, distended abdomen, mouth ulcers, constipation, fever, night sweats, and fatigue. I felt like you, and thought there must be a host of treatment options we could chose from. Unfortunately, treatments are limited, but that's not to say that you have no other choice than steroids. Our GI gave us 2 first line treatment options-prednisone or EEN with NG tube. We chose prednisone, but there are many others who have done EEN and had great success. Our GI actually recommends EEN over prednisone. You will need a maintenance med however, as either steroids or EEN is for a limited time, 3 mos, as per our GI. Imuran or 6mp is a typical maintenance med. My son could not tolerate Imuran, so he is now on weekly methotrexate injections. It has worked well for him. Some find diet helps. We put my son on a low residue diet until he was in remission. Now he eats most things except popcorn, or a lot of junk food or processed foods.
I'm sure there'll be others along soon who can give you much better advice than I. But know that we are here for you and understand what you are going through. I hope you find a good treatment plan for your son and get him feeling well again soon. Take care!

 

[Catherine]

Mamahenn

Welcome to the forum.

What did they end deciding about Thalassemia? We also had testing on the path to a Crohn's dx my daughter tested negative for beta and all common types of alpha.

Just prior to dx, was also dx with Amenia of chronic disease which explained why her iron number acted the way they did.

Interestedly your son symptoms match Sarah's up until six months prior to dx.

Has ever has gastro like symptoms which appear a only stomach ache last a few hours then disappear a few hours later.

Crohn's without the normal symptoms can be very dangerous as inflammation can be siliently doing damage without the normal signs of active disease.

 

[crohnsinct]

Hi mamahenn and welcome.

Gosh trying to make drug choices when what you are seeing in front of you doesn't look all that bad is so hard. Lack of growth and weight gain are pretty big symptoms though and the easiest ones to miss so kudos to you all for catching it. If he has fallen off his growth curve then there usually is damage going on inside. My daughter did Exclusive Enteral Nutrition but like mentioned above it only works while you are on it and it is only a matter of time before symptoms return. For this reason, most docs will want the child to be on a maintenance drug. Since your son's symptoms are so silent I would imagine that is even more of a reason the doc wants him on a maintenance drug. My daughter also didn't have any symptoms until two weeks prior to dx. She ended up in the hospital in ICU malnourished and receiving blood transfusions. Her disease was silent they figure for about two years and untreated left her in horrible shape.

Current research shows the sooner you are able to get control over the disease the less likely the child will need surgery in the future. Also he is young so if you could get a handle on the inflammation you will be able to capitalize on "the growing years".

I also wondered if diet would help and did a ton of research on the topic. All roads pointed me to meds are needed. Diet did not cause the disease and will not cure it. However, diet is very important during flares in terms of making the patient more comfortable. Some people also have trigger foods. Lastly, a good healthy diet is important for overall health as the meds the kids have to be on suppress their immune system and can take a toll on them. I also try to keep the most nutrient dense foods going in just in case there is any inflammation. If there is inflammation they can not absorb all their nutrients so I like to pack as many in as possible so what is absorbed is good stuff.

Some people have excellent luck with the SCD diet.

Good Luck with whatever you decide.

 

[Justin1982]

Hi all, I'm new here. Our 10 year old son was just diagnosed with Crohn's after an endoscopy/colonoscopy this week. A bit of background, our quest began last year when we noticed he wasn't eating as much. Routine blood tests at the pediatrician showed that he was anemic which led us to a hematologist who put him on iron and then did testing for Thalessemia. End result of that was that he may have had an undected form of Thalessemia and that we could stop iron (his levels did go up while on iron). Our pediatrician then sent us to an endo b/c he still wasn't gaining weight and his iron levels were not where they needed to be (but were not too low). Endo did further testing and found that he was low in protein and whatever marker they test for that shows inflammation was high. We were then sent to a GI.

My son has never had any diarrhea or vomiting. He has never complained of any food bothering him, he has never complained of pain or cramping and seemingly does not have any of the "normal" symptoms associated with Crohn's. His only current "symptoms" would be that he sometimes (but not always) feels full after eating, is not gaining much weight and his low levels of protein/hemoglobin. His colonoscopy did show some ulcers and inflammation and the dr. has given the Crohn's diagnosis.

I know we are just learning about this and have a lot of research to do but we're very concerned with the dr.'s plan of attack so to speak. She is suggesting steroids (entocort after I questioned prednisone) and then either 6MP (her preference) or Methotrexate. I asked about changing his diet or working with a nutritionist and she said it was not necessary.

I'm seeking some advice from people who have been there/done that. I realize that the above medications have helped numerous people and I realize that they are necessary BUT considering that my son is not showing any of "normal" signs of Crohn's just yet, does 6MP and Methotrexate seem harsh as medications to start off with?

Thank you in advance for any thoughts/advice.

I am on 9mg of Entocort EC since May of last year. The drug has fewer side effects than most steroids. Entocort are time release capsules, only targeting the small intestine. Therefore, it's a great drug to try if you want results, but with few issues.

I can't say I'm in remission or cured... However, I am able to eat again and be less sick.

Notably, Crohn's can be minor to severe. Maybe your son's condition hasn't manifested into a full blown flares. However, weight loss, malabsorption, inflammation, poor eating, are all indications something is wrong.

If you are uneasy with the diagnosis, obtain a second opinion. None of us are doctors here, so our advice is limited to what we've each experienced.

 

[Patricia56]

Welcome to the forum. Sorry your son is facing this but glad you found us.

Was any other testing done like an MRE (an MRI of the abdomen) or small bowel follow through? If not I would suggest you ask the doc to do this prior to deciding whether entocort is sufficient. The extent of inflammation in the small bowel cannot be detected by a colonoscopy/endoscopy which only reach a small way into the small intestines.

And you can do both EEN (exclusive liquid diet - no regular food by mouth) and steriods at the same time in hopes of reducing the time on steriods. Entocort only treats the small intestines so if he also has inflammation in the colon this would not normally be sufficient and prednisone would be a better choice if you don't want to try doing enteral nutrition. However, EN is most effective for small bowel disease so if there is extensive colon involvement you will probably still need to add prednisone short term.

As others have said, this can be a silent disease that causes life-threatening damage in the form of abscesses, perforations and obstructions. It can also leave scarring behind that constricts the intestines and must be removed by surgery. The fact that your son is not growing strongly suggests that he has significant disease because he is not absorbing enough nutrition to grow.

While 6-MP and Methotrexate may seem like harsh meds, given the seriousness of the illness, they are not. These drugs suppress the part of your son's immune system that is in overdrive, reducing the intensity of the part of our immune system that responds to chronic illness - not eliminating it. While our children are "immune suppressed" this is a relative term and they are not immune suppressed to the degree cancer patients are - to give one comparison. They actually receive a light dose of these meds compared to other uses like cancer therapy.

The acute response part of our immune system is not compromised. This means they will generally have a normal immune response to colds and other viral and simple infections. Only when these conditions persist beyond the normal length or when they develop complications do the docs get really concerned and antibiotics or other treatment may be started sooner than it might be with other children.

Overall when you look at the tens of thousands of people of all ages around the world who are taking these drugs, the rate of complications is extremely low and the trade off in terms of health, especially in children whose bodies and brains are developing during this period, is well worth it in my opinion.

My son was diagnosed at age 10 after failing to grow for nearly 3 years. He too had very few symptoms but had serious disease when it was finally discovered. We started with EEN, added prednisone when this wasn't enough, then did 6-MP, added Entocort and finally added Humira plus Methotrexate (MTX). He is now on Remicade plus MTX.

It was only a matter of time before your son developed more serious symptoms and it's very good that his illness was identified before then.

It's always a hard decision to put your child on medication long term - and this will be for life for him. Hopefully this will be sufficient to get him into remission and keep him there and you will not be faced with choices about the only other class of meds that help Crohn's - the biologics.

As others have posted, there are not really a lot of treatment choices but I am grateful that we have something.

You should always do what you think best - we will support whatever decisions you make because they must be ones that you are comfortable with and that work for your family.

When you are working with your doctor and considering treatment plans you may find this memory aid helpful:

B - what are the Benefits?
R - what are the Risks?
A - what are the Alternatives?
N - what if we do Nothing?
D - Decision

All the best

 

[Twiggy930]

:welcome: Mamahenn

Sorry to hear about your son's diagnosis but glad you have found us. My son was also diagnosed at the age of 10. I would definitely look into exclusive enteral nutrition (EEN) as an alternative to steroids. My son has tried both treatments and definitely prefers EEN to steroids, although his experience is with pred not entocort. My son has been on azathioprine (sister drug to 6MP) since diagnosis 2 years ago and he has had no problems with it at all.

As for diets we have been following a FODMAP diet to help control some abdominal pain that persisted even though the inflammation seems to be under control. It has help that symptom but I'm sure that it wouldn't control his disease overall.

:hang: it will all feel easier with time.

 

[Jmrogers4]

Welcome,
My son was also diagnosed at 10. The drugs are always a hard choice as we all want them healthy with the least amount of side effects.

I second Patricia on the MRE, my son is one of those that has relatively few symptoms, his biggest issue was and continues to be lack of growth/weight gain. This is because although his last scopes were clean the MRE showed lots of inflammation in the small bowel - his only symptoms for the last 5 months no growth/weight gain and lack of appetite, he would eat a small amount and say he was full. He was barely eating the amount a toddler would and definitely not a teenage boy.

As others have said EEN is an option and my son has used it both in place of prednisone and as supplemental nutrition to gain weight.

I will say we have gone rounds with he is not that bad we don't need stronger drugs, well I can tell you that I have had to eat those words the last 2 months as he is the best he has ever been and he says he didn't realize he didn't feel 100% until now when he feels so and the appetite has definitely increased and he is eating like a normal teenage boy. He has gained weight and I'm confident height will soon follow.

As someone once said on here all these scary medicines seem like a basket of kittens when they work and your child is growing, happy and healthy and you just pray they will continue to work.

Please keep us posted, there are so many wonderful people on here with vast amounts of knowledge.

 

[my little penguin]

My DS was dx at age 7. Similar symptoms failure to gain weight grow abdominal pain and constipation.
We started with pentasa until we were able to get a second opinion to confirm crohn's .
At that point switched to EEN and 6-mp.
I was in denial and very afraid of all drugs at dx.
I watch the mild symptoms get worse even tried two rounds of steriods plus Mtx .
But for my kiddo remicade was the miracle and got him to a good place.
He is now on humira and doing well.

Each kid is different all the drugs are ugly
But even leaving mild inflammation untreated or under treated can cause scar tissue which is hard ( this leads to strictures or worse ) since hard tissue doesn't move .

You would leave any inflammation you could see on the outside untreated .
This is just a little bit harder to see except for in a scope or MRI .

You want to keep as much of the intestine as healthy as possible for as long as possible .

 

[Sascot]

Hi and welcome. Sorry to hear about the diagnosis. My son also didn't have "normal" Crohns symptoms so took a while to be diagnosed. I can understand you being reluctant about meds. I also fought it and we tried a few months med free but ended up having surgery on a peri-anal abscess and developed a fistula. I do wonder if we had gone onto meds straight away whether we might have avoided that. He is now on 6mp as a maintenance med.
Since your child seems to be quite "mild" with regards ulcers, etc, it would be worth asking about Enteral Nutrition (liquid diet), Instead of steroids.
My son did 8 weeks of Modulen via a NG tube (he hated the taste) and it healed all his tummy ulcers, gave him good nutrition and allowed his stomach and intestines to rest. The EN is our first line treatment in Scotland, my son was not given a choice. If he couldn't drink it normally he had to get the tube.
Good luck!

 

[dodie74]

Sorry to hear about diagnosis. My son was diagnosed at 7years old, no obvious symtoms either but after scopes and biopsies, crohns was diagnosed. He is 11 now and just had another set of scopes which showed inflammation in the small bowel so after being on 6mp from the very beginning we have now just started methotrexate shots a month ago which he does himself once a week and already his bloods show lower level of inflammation. It is very scary at the beginning with all the meds etc but the benefits of them outweigh the risks. Best of luck. xx