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11-24-2017, 03:52 AM   #1
Pangolin
 
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Newly Diagnosed 10 yr Old with Crohn's

Hi everyone. I'm the mom of a little boy (10 yrs old) who just got diagnosed with Crohn's.

I'm not sure when the Crohn's started. Our trouble began the day he came home from the hospital: he wouldn't nurse. He had colic; he was diagnosed with GERD and put on anti-reflux medication. I made a slanted changing station for him because he began screaming in pain if I put him on his back. He was a very picky eater; would only nurse on his right side, lying down, in bed, with the blanket over him, just before falling asleep. At all other times he fought hunger and just wouldn't eat. His birth weight was good, but by 6 months he'd fallen to the bottom 5th%. Then he fell off the chart.

We went to a nutritionist when he was about a year because he wasn't eating enough. She advised us to feed him less often and keep feeding him foods he refused because he'd get over it and start eating them. This wasn't very useful advice.

Soon after he started losing weight despite everything and we started him on formula, (Pediasure,) which probably saved his life. He began guzzling that down. For years he basically ate Pediasure and refused most other foods. Oh, sure, we tried to get him to eat other foods. We tried offering foods more often. We tried offering foods less often. We tried letting him pick meals. We tried all the things. Didn't work. Once we were just like "Oh no, your bottle broke and the store is all out of new ones. Here, we can put your Pediasure in a cup and you can have dinner with us." He refused until he was vomiting from low blood sugar. Obviously we gave him the bottle back.

Finally around 6 he stopped drinking Pediasure and began eating real food, but the pickiness continued. For example, he'd eat ham, but not bread, so I sent him bags of ham in his lunchbox instead of sandwiches. I also sent him containers of peanut butter and crackers. (I don't think the crackers ever got eaten, but I sent them.) Mostly his lunches didn't get eaten. He has a few favorite foods (pizza, hot dogs) but he won't eat or even touch or consider most foods.

And, of course, he didn't grow much. But he seemed like a happy, healthy kid, so I tried not to obsess about it. After all, his dad and I are also small people who never weighed much (were both around the 5th%), so we didn't expect him to be very big, either.

Then last summer things got worse. He had uncontrollable diarrhea at camp. At home, he stopped eating all his usual things. He stopped eating ice cream. Wouldn't drink chocolate milk. Was spending way too long in the bathroom. I didn't really realize how much diarrhea he was having because he locks the door while he's in there and I have other kids keeping me busy, but eventually we noticed "hey he's looking really skinny" and started trying even harder to get him to eat. We tried to get him to eat yogurt (thinking the probiotics would help his diarrhea) and he just looked at us like we were trying to get him to eat worms.

So we got probiotic powder and snuck it into some of the foods he would eat. Finally he started eating a little more. He even had a decent poop. One day of good health! We went to the pumpkin patch and he was running around happily with his siblings in the corn maze, having a great time.

The next day he came home from school with a 100+ fever and a headache. The diarrhea came back. His fevers came and went over the weekend, but on Saturday something new: his butt hurt. At first I thought it was the result of diarrhea, but no, it was on the side of his butt. By Sunday it was clear he was in a great deal of pain. Oddly, despite the fever and pain, he swore up and down that he otherwise felt fine. No runny nose, no sore throat. No general achiness.

Fever + pain with no other symptoms said internal infection to me. Maybe appendicitis? My husband (his dad) took him to urgent care. They took his temperature, said it was normal, said he had a broken tailbone, and sent him home.

The terms of service says not to curse so I won't tell you exactly what I think of the urgent care but suffice to say it involves a lot of poop emojis.

That evening he was very clearly not doing well. First thing in the morning we went to the pediatrician. The pediatrician forwarded us to the ER. We stayed for two weeks. First all the tests, then the diagnosis: Crohn's. The pain was caused by an abscess. They drained the abscess and put him on a feeding tube.

At the hospital they didn't let him eat for three days because of all of the tests (MRI, colonoscopy, etc). He had an IV, but this was a very skinny kid ("malnourished" was the doctor's word) and I really don't know what is best medical practice or if an IV is sufficient but I was very troubled by this. I thought he should be eating. He was so weak and hungry.

We've been home for a bit over a week. He's gained >5 lbs since he was admitted. He's on antibiotics, remicade, and 1500 calories a night by tube. We're still waiting to see what works. Waiting and researching.

Most of the doctors and nurses at the hospital were great. We had one doctor I didn't like, though, the first night. At that point I didn't know what was going on and wasn't sure which information was important. Did his butt hurt because he had fallen on the stairs on the way to the pumpkin patch? Was his tailbone broken? What about the sore throat he'd had a couple of weeks ago? She didn't like my uncertainty. "Well I thought we were here for the diarrhea, but it looks like we're actually here for the pain in his bottom." Me: "Well we're here for both. They could be connected." Her: "Well I wouldn't know about that."

I was flabbergasted. Even I knew these things could be linked. And even if they weren't, they were both important.

Like I said, everyone else at the hospital was great. But if you get a doctor who thinks part of your story isn't important, don't get discouraged. You're the one living it. You know your symptoms. Don't let someone tell you that only part of what you're suffering matters.

Now if that weren't enough... My 5 yr old has been throwing up. Not a lot, just spit-ups. But they've gotten more frequent this month. Last week she got sent home from school twice last week because she threw up. I don't think she dislikes school or is doing it on purpose. She also threw up at home right after dinner. She's thrown up after grapes, chocolate milk, ice cream sandwiches, and Halloween candy. (She was with grandma at the time and grandma swears up and down that she did not let her have that much candy.)

Hopefully it's something innocuous like "she's allergic to chocolate" or "she was stressed out because her brother was in the hospital." She's got an appointment with the gastro next week and hopefully we'll find out.

So far we've been researching other Crohn's treatments. I don't really know much about anything yet, but I've seen good looking studies on hyperbaric treatments for healing fistulas, anti-MAP therapy (the idea that Johne's disease in cattle and Crohn's in people can be caused by the same bacteria seems very sensible,) and fecal transplants (it sounds silly, but given the lengths people have to go to with this disease, why not?) I hear there's a vaccine trial and am eagerly awaiting news on that. Has anyone interacted with the company in NZ that tests for MAP infection? Are they good?


Oh. I should note that since the hospitalization, he has been more willing to try new foods. Now this is "willing" by his standards, mind, not normal people standards. He did have a few pieces of chicken from a bowl of soup (he is absolutely opposed to the concept of "food served with water") and even sampled yogurt, though I made the mistake of letting him pick his own yogurt and I swear he picked the worst one in the store just because it came with M&Ms. He also tried a peanut butter and jelly SANDWICH on BREAD for the first time in his life and decided he likes it!

His gastro noted that she's seen several kids with similar histories of being extremely picky eaters from birth and then developing Crohn's, which is why I included the origin story. She also noted that this seems especially common in autistic children, who often have severe food issues. Well, I don't consider him autistic, but his teachers do. (I have autistic family members and by comparison with them, he's normal. But in comparison to other kids? I have no idea.) So maybe there's a connection.

We've talked to two more dieticians (they are mostly concerned with just getting calories into him, not any specific diets) and with any luck will get a recommendation for someone with experience getting really picky eaters to eat things, because I am obviously not very good at that.

So that's where we are now. I hope this story helps someone else going through the same things we are. Good luck, everyone.
11-24-2017, 07:38 AM   #2
Pilgrim
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I don't know if you've researched the specific carbohydrate diet (SCD) as an adjunct treatment. It is used in both Crohn's disease and in autism actually. There is a website called pecanbread.com that is geared towards parents of kids on the spectrum and good advice on how to implement with very picky eaters.
We did this diet strictly for 6 months for Crohn's in my 7 year old and she seemed to do well on it.
It basically aims to change the microbiome, in a way providing what the goal is in a fecal transplant except with diet.
There is about a 1 in 10 chance ( what I read) of a sibling also having Crohn's. Our daughter has 6 siblings. So far Ok, but one is being investigated by GI for Crohn's.
There's a steep learning curve. It takes time. The first year is tough! Hugs to you.
11-24-2017, 08:24 AM   #3
my little penguin
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Regardless of Autism or not
Treating the Crohns will help
But it's a hard first year or two
Ds was dx at 7 but had GI issues since birth
He is now almost 14 so we have been doing this a very very long time and researching everything

Diet -specific carbohydrates diet works for some adults
But for kids especially picky kids they tend to lose too much weight and not grow
Een (exclusive enteral nutrition-formula only diet no solid food ) is proven to induce remission in kids when done for 6-8 weeks instead of or in addition to steriods
This does not replace the need for maintenance meds like remicade
There are three types of formula
Pedisure -kids boost are polymeric-which is whole proteins easier than solids but harder than the other to digest
Peptide -peptamen jr are semi elemental-meaning the protein chains are broken up more
Most kids with Crohns require these at least
Last is elemental (amino acid based ) -elecare jr , alfamino jr, neocate jr
All food or formula is broken down into amino acids so this formula does the work for the body so it can rest more
However the elemental formula tastes very foul and most need a ng tube to drink it

After een most Crohns kids supplement with formula with food to keep up their weight and growth

Ds currently drinks orally neocate jr chocolate about 50% of his calories ((he has gastroparesis as well ) -he does not use a tube
He started out on kids boost which quickly didn't work
Then switch to peptamen jr for a few years


It's standard of care to stop all food etc and only iv fluids for a few days when they are concerned over a stricture or obstruction
This is for safety reasons since a bowel rupture potentially could kill
And until they know for sure (MRE etc...)
They hold food
They were also checking for the type of diarrhea by holding food
Diarrhea that stops with all food intake is different than diarrhea that doesn't even in Crohns patients


Remicade is a biologic that once you start you stay on until it stops working or your kiddo has an allergic reaction

It takes 6-8 weeks to start working
Sometimes longer if the dose /timing needs adjusted
Most Crohns kids "burn" through the meds so the standard adult dose
Of 5 mg/kg every 8 weeks tends to not be enough

Many kids here needed 10 mg/kg every 4 weeks at first
Then lowered the dose later
Ds needed 7.5 mg/kg every 6 weeks
But it took a full 7 weeks after his first dose to see an improvement
He later reacted to remicade twice
So he was switched to humira after 8 months
After almost 6 years on humira
It stopped working and he was recently just switched to Stelara


Kids dx before age 6 may have a genetic component
Known as very early onset ibd


These are difficult to treat

https://www.egl-eurofins.com/documents/IBD.pdf

Different than normal kid ibd

Ds currently takes
Stelara (Crohns and arthritis)
Methotrexate (mainly for arthritis)
Ivig (autoimmune disorders including Crohns and arthritis)

Realize
It's a very long marathon not a short race
So learn what you can
Join the parents section
To vent ask questions etc..
We are here to help
http://www.crohnsforum.com/forumdisplay.php?f=49
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11-24-2017, 01:22 PM   #4
Pangolin
 
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Thanks so much for the replies.

Has anyone used Otakaru Pathway's diagnostic test? (I'd include the link but I don't have links privileges, yet.) Are they the best, or is there anyone similarly good in the US?
11-24-2017, 01:24 PM   #5
Farmwife
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
11-24-2017, 01:56 PM   #6
my little penguin
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Your child's pediatric gastroenterologist should be the one ordering all valid useful tests
Please do not try to do tests from online sites promising anything

There are many theories on why Crohns exists
Most are for adults who have lived
Not kids
Most theories have NOT been proven or are not accepted yet

I understand the desperation of wanting to "fix" it permanently
There is NO CURE. For Crohns

I do not know of any kids who successfully used anti MAP therapies
The abx combos used are extremely hard onnthe body

Please try to focus on your child's GI doctor recommendations for now
Remicade is extremely successful
Kids and adults stay on it for decades without issue
It just takes time to work

Everything in GI land takes weeks to months to work
11-24-2017, 02:36 PM   #7
Maya142
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Hi and welcome! I also had a picky eater growing - nowhere near as picky as your son, but compared to my other daughter, she was very picky. Now after a diagnosis of Crohn's and Gastroparesis, I wonder if the pickiness was caused by stomach pain or discomfort that she was just too young to articulate. And if she chose foods that made her stomach feel better.

Regardless, it sounds like you do have a treatment plan. Remicade is an extremely effective drug and has been a wonder drug for many kiddos, including my own. My daughter was put on Remicade and Methotrexate after being diagnosed. It took a while to work - 3-4 infusions, but after that she felt good. And best of all, scopes done 8 months later showed that ALL the ulcers in her colon had healed - in fact, her colon looked perfect. Still had a little inflammation in the end of her small bowel,but overall it was a miraculous improvement.

For us, the decision to put my daughter on those meds was hard. They seemed so scary but at the same time, the disease was scarier. With Crohn's, the risk of damage to the bowel is too great - strictures, abscesses, fistulae etc. The goal is to prevent complications like those and to reduce the likelihood that they need surgery.

Crohn's in kids tends to be aggressive, which is why it is treated so aggressively.

Both my daughters also have a form of juvenile idiopathic arthritis, and have been on biologics like Remicade for years. They have had NO side effects at all.

Exclusive Enteral Nutrition is a formula only diet used to induce remission. 100% formula for 6 weeks or 8 weeks to give the maintenance medication (like Remicade) time to kick in. That is proven to work - there are plenty of studies that show that it is as effective as steroids for inducing remission and actually works better than steroids for mucosal healing.

Some kids drink the formula, others use tubes. Many kids stay on some formula (supplemental EN) in addition to food after being done with EEN to help with growth and weight gain. It sounds like that is what your son has been put on.

MAP has been researched and is still being researched but it is only a theory. Fecal transplants work very well for CDiff (an infection) but unfortunately did not do well in trials for Crohn's or UC.

The only proven treatments for Crohn's are immunomodulators like Methotrexate and Imuran/6MP or biologics - Remicade, Humira, Entyvio, Stelara. Often a combination of meds need to be used.

The best advice I ever received was to think of it as a marathon, not a sprint. It takes time to find the right treatment for your child and everything in the GI world is SLOW. The first year tends to be the toughest as you adjust to the disease.

But there is lots of great info on the forum and lots of support here.

Good luck!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
11-25-2017, 12:25 AM   #8
Pangolin
 
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Thanks everyone for all of the replies. I really appreciate you all.
11-28-2017, 12:58 PM   #9
Jmrogers4
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My son was diagnosed with crohn's at 10, he's 18 now. We all want to "fix" our kids. For what it is worth my son was also an extremely picky eater, we tried many of the diets. He would never eat enough of what was allowed to gain weight and ultimately had to abandon them. The SCD seemed to help control his symptoms but no weight gain and just kept falling farther down the scales.
He started remicade at 14 1/2 and was pretty delayed in growth and development at that point. Remicade has been his magic medicine and I can tell you (as many other parents here will attest to) I was against it up until I didn't see another choice as something had to be done, they were at the point talking about it affecting other organs, his BMI was 1%. We've had to make adjustments in regards to dosage and frequency. We were at 10ml/kg every 6 weeks for quite sometime, we have been able to drop to 7.5ml/kg every 6 weeks for the last year or so and he continues to do really well. It took 6 months to a year to really achieve remission but things have been going gang busters every since. He has grown over a foot since starting remicade. He's still a pretty picky eater but he eats A LOT of what he likes now. He doesn't have any food restrictions besides popcorn, seeds, nuts (but with him away at college he may be sampling those as well). We were told by the GI in the past when we were just trying to put weight let him eat whatever he would and although it was usually only a bite or two of those so I well understand your frustration. I think I gained about 50 pounds because for all that he didn't eat I would compensate for by eating.
He is still thin but then so is his brother, his father and I was before all the extra eating I did for him but he is healthy and you can tell it's a natural slimness now not from malnutrition.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
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