Like father like son

[braveheart]

I’ve had Crohn for more than 30 years. I would say the severity of my Crohn is ‘intermediate’. I am living a plenty life but with some efforts. I had two surgeries so far and I had long times in remission as same as long times taking meds.

I have two beautiful kids and unfortunately one of my worst nightmares became reality. My 10 years old kid was diagnosed with Crohn this year.

We have been struggling with him for more than a year. He started with lack of appetite and avoided some foods such as red meat. At the beginning we took that as something normal for a kid that becomes more wayward / picky. But then he avoided more types of food and also ate very small portions. I wanted doctors to check for IBD on him but they didn’t. Unfortunately they follow some protocols but not their instincts (or common sense). IBD is not in the radar for kids even having a family background. He started to loss weight and we send him to psychotherapy. After a year we saw blood in his stools and that convinced doctors to deeply test for IBD (colonoscopy). Unfortunately I couldn't convince doctors to test him earlier. We would have started a treatments sooner. On the bright side he is not experiencing any pain but he has strong diarrhea.

All this journey of meeting new doctors, blood test everywhere, hospital, and the endoscopic studies ended up ruining his mood. Now he eats very little and developed phagophobia (fear to swallow). He thinks there is something wrong in his throat and he refuses to shallow. It takes an hour and a half for him to finish half portion of food. Lunch / Dinner time is not enjoyable any more for him (neither the rest of the family). We added some nutritional supplements on his diet (Pediasure). Now we are dealing with Crohn Diesease and Phagophobia and that is an extra challenge for us to follow a healthy diet.

I was always aware that autoimmune disorders are genetic, ie. my father had arthritis but since my kid was diagnosed I can’t help being extremely sad and I think I will never be the same. I hope the treatments start working for him to give us some relief. I am sorry to share this sad story and these negative feelings, but this is how it goes. I hope someone can benefit from reading it.

 

[Delta_hippo]

Sorry to hear it and hope your boy responds quickly to treatment. A couple of thoughts firstly with the swallowing fear I wonder if he would prefer a very smooth textured diet the IBD AID is supposed to be anti-inflammatory for Crohn’s and starts with basically mush/ smoothies/ soups. If he is interested there is a very helpful Facebook group who share recipes that are much nicer than those on the UMASS website (unless your boy enjoys cold avocado soup, I suppose someone has to). The other thought is whether he would benefit from child psychologist referral may be worth asking the doctors. It’s a lot to come to terms with at any age and the fear of swallowing too, poor thing.

 

[Pangolin]

Psychiatric explanations for the appetite/swallowing issues are probably wrong. He has problems with his digestion, and that's probably causing all of this. Sending the poor boy to psychotherapy rather than figuring out the underlying problem sounds all too common for our medical system. When doctors can't explain something, they just assume wrongly that it's psychiatric.

(This probably isn't what's going on with your son, but my son had some swallowing issues caused by Remicade.)

Anyway, now that he has a Crohn's diagnosis, the top priority has to be making all of that inflammation go away. Since he has trouble with swallowing, EEN with a nasogastric tube could help a lot. EEN (consuming an all-formula diet with no food) can bring down inflammation fast.

 

[my little penguin]

Did they do an upper endoscopy as well as a colonoscopy?
Especially if he is taking his time swallowing .
Crohns can affect anywhere from the mouth to the anus including the esophagus.
Has he had imaging (MRE )? And capsule endoscopy?
Is he being seen by a pediatric IBD specialist?
They tend to have therapists on staff for medical coping for kids .

Een (exclusive enteral nutrition ) - formula only no solid foods can be used as a treatment for crohns
It’s commonly used in kids
My child (adult now ) was only 7 at dx and did een for 9 weeks which was tough
But it stopped his vomiting and help him feel better while we waited for meds to kick in
Unfortunately the med journey took close to a year to find the one which did the trick

no family history here and it took two years of my kiddo not gaining /losing weight before they checked(he also started bleeding so that was the tipping point )

unfortunately it is very common
That said very early onset ibd is extremely rare
Kids dx at age 10 or less is only 2% of all pediatric crohns patients
Numbers getting increasing small the younger they are at dx
Hugs

 

[braveheart]

Thank you all for your advice and comments. My kid had upper endoscopy as well and his esophagus and stomach has no issues. The first part with little signs of inflammation is the ileum. And thanks Good he never said he had pain but from time to time he throws up.


Regarding mental health I know some people think, "you are too nervous, that’s why you have digestive problems" and I strongly disagree with that. I think is the other way about. Crohn’s suffers are a healthy persons that all of a sudden get this heavy disease and because of this many other aspects of our lives gets affected and that ends up causing us lots of stress and anxiety. Every time I travel for vacations I check which hospitals are near the vacation area, to say the least.


In the particular case of my son I think all this stress caused him phagophobia. He starts eating with some enthusiasm but he just does not swallow. He keeps adding more and more food into his mouth and never stop chewing. As he add tons of food into his mouth without swallowing his cheeks inflates as same as squirrels do when they carry food. The mouth never empties, chewing never ends and he never swallows. Then having the moth flooded with chowed food, the food breaks into into the digestive system as if you unblock a sewer on a flooded area. The last bites are the long lasting ones, as there is no new food to do pressure into the mouth. He ends up drinking some water to finish. In same occasions he waits for us to be distracted to spit the remaining food somewhere. Of course we talked a lot, believe me A LOT about this, about the importance of good feeding. But he just can’t explain what he does it this way. If you read this and doesn’t know my kid you may think he has down syndrome or autism, but he is perfectly normal in all other aspects of his life. He performs very well as school in maths, sports, etc. But this is just insane.

 

[my little penguin]

So in kids with eosinophilic esophagitis (EoE)
They typically associate eating with pain /vomiting
Getting the disease inflammation under control first is key especially for crohns kids
Definitely ask the Gi about doing een (pediasure ) can be used if he is willing to drink it
It’s as effective as steriods in reducing inflammation.
It will calm the inflammation and pain down
Most kids are in pain but don’t express it because they don’t know what it is like to feel normal

once the inflammation is down then medical coping/speech therapy can work on solid food with him

formula only can be simply him drinking it
No tube required

Provide he has no issues with liquids

Inflammation in the gut can also cause gastroparesis (delayed gastric emptying) so the kiddo really doesn’t want to eat since nausea becomes an issue

Liquids empty in an hour
Solids take 4 hours in normal folks
Longer with gastroparesis

definitely speak to his Gi

 

[Maya142]

I agree that you should check and see if a) the IBD could be causing swallowing problems
b) If something like EoE could be causing swallowing problems
c) If a motility issue like Gastroparesis is affecting his appetite - my daughter has Gastroparesis and she would get so nauseous after eating that eventually she was subsisting on less then 500 calories and lost roughly 25 lbs, which made her dangerously underweight
d) if GERD could be causing reflux that is making swallowing difficult

I don't know if this is a test he can do, but have they done something like a Barium swallow test to see if he is able to swallow normally.

What treatment is he on for his IBD? If he has no other GI conditions and truly has phagophobia, then EEN might be a good idea though I wonder if it would worsen his phagophobia by making him used to drinking only liquids. Feeding therapy or speech therapy might be a good idea.

While I agree in general that doctors are too quick to say "it's all in your head," I honestly think seeing a psychologist can help most, if not all, kids with IBD. Now pediatric GI departments often have psychologists who work with kids with chronic GI illnesses. My daughter saw a psychologist in the GI department for years. She was a stubborn teenager when diagnosed and really did not want to see a psychologist. But luckily, her GI insisted and she finally went and it took some times, but her psychologist helped her SO much. It really and truly made a world of difference and pretty soon my daughter was reminding me to schedule appointments with her psychologist for her. Her psychologist helped her cope with the IBD diagnosis, a Gastroparesis diagnosis, severe weight loss and malnutrition that required a feeding tube (first an NG tube, then an NJ tube and finally a surgically placed tube in her belly), with MANY feeding tube changes and other procedures and with multiple hospitalizations and surgeries.

Is your son seeing a pediatric GI at a children's hospital? Most big children's hospitals now have IBD centers. Some of the best ones are CHOP (In Philadelphia), Cincinnati Children's and Boston Children's - just in case you're near any of those. I will also say that we found that a second opinion was immensely helpful in figuring out if we were on the right path.

 

[braveheart]

Many things happened over the last few months.

We searched for help to psychologist and psychiatrist doctors to help with swallowing problem. My kid was prescribed sertraline, an anti-depressant med that is commonly used for the ones that have phagophobia. At the same time he started to be anemic and we was prescribed iron infusions (intravenous). As soon as he started the iron infusions he also started to eat better, now he is much better, he gained a lot of weight, and is not taking the iron infusions anymore. I’ve learn that anemia and low iron can lead to depression. At this point I am not sure if the what had helped for the swallowing problems was the iron, the sertaline or the sad experience of going to the hospital for the intravenous transfer and see other kids with terminal illnesses near him made him react. Maybe the three of them. He is still taking the anti-depressant since his IBD is still not going well and we do not want him to fight all the enemies at the same time.

And unfortunately his IBD didn’t went well. We had bloody stools and doctors decided to stop 6-mp to later start Humira. I think they took the right decision but the transition between the two treatments was awful. They told us to stop 6-mp and wait for a month without taking any meds and he end up hospitalized for 10 days and was given predinsone. He continued with predinsone at home and tapering down + lots of vitamins + diet and started with Humira. He eat like a shipwreck, gained a lot of wait and recover finally his blood levels.

It’s been a month since he left predinsone and unfortunately he has bloody stools again. Doctors said they will adjust frequency for Humira. Now he is being given Humira every 8 weeks. At this point I am not sure if Humira didn’t worked at all (since he just quit predinsone a month ago) or having higher frequency can keep things under control.

 

[my little penguin]

Humira is standard dose of every 2 weeks
Not 8 weeks
It can be given every 5 days if needed .
Are you in the US seeing a pediatric ibd specialist ???
Most stay on steriods until the meds have kicked in
They don’t stop them
Humira can take three months to work fully when given every two weeks

please get a second opinion at a university based pediatric ibd center .

 

[braveheart]

I am sorry I need to clarify things better because I said it wrong. It is not Humira, but Remicade med he is being given.
And doctors tried to stick to the brochure dosage that states a intravenous induction regimen at 0, 2 and 6 weeks followed by a maintenance regimen every 8 weeks. The induction worked well but he was taking prednisone at the same time. That's why I don't know how effective Remicade was for my kid. Doctors said can will adjust Remicade frequency I hope that works.

I live in South America and the pediatric center we go is a very reputable one. My main concern about doctors in general is they take too long to start a new course of action. That also happened in other medical center I went before. I think that is a problem that can happen in any place. Doctors just follow protocols and most of the time these protocols does not take much into account patients feedback, for instance I can see how the stools of my kid looks like every day and they don't.
In my personal experience (I also have CD) doctors don't care much if after years of remission I tell them I started having some degree of discomfort again, they have to have clear signals of active illness on blood tests, stools tests and endoscopy to start a new treatment.

 

[Pangolin]

Shortly after my son started Remicade, when it was becoming obvious that it wasn't working very well, we switched his diet to EEN (all formula). I think that was the only thing that prevented a serious downward spiral and hospitalization until we eventually figured out other options.

(what we eventually figured out was surgery to remove an inflamed portion of intestine and then Stelara)

 

[braveheart]

Thanks @Pangolin for your comments. Do you son have CD or UC ? Did you see blood in his stools.

 

[Pangolin]

Crohn's, and typically there was no blood, but occasionally there was some.