Newly Diagnosed Child with Crohn's

[Sonnyboy66]

Our son was recently diagnosed with moderate to severe Crohn's disease. He is an active 10 year old with no apparent outwards signs of Crohn's disease like we have read or heard. He is 4'11", 102 lbs. and wears s men's shoe size, 8.5. He pitches on his Little League and travel baseball teams, as well as swimming 5 nights a week for an hour and a half as part of a competitive swim club, in which he competes in various swim meets. He had no fatigue issues that may be a sign. About one year ago he began getting very hungry all of a sudden and would throw up if not fed. If he ate all was fine. Various doctors tested him for food allergies, stomach migraines, etc. all negative it would turn out. Then just after midnight the Sunday before Thanksgiving he woke up with extreme pain in his stomach and began vomiting and would not stop. We would bring him to our local hospital where a CAT Scan with contrast would be done and a blockage was discovered in his small intestine (ileum). We were told he would need to have an NG tube inserted through his nose, while he was awake, and would get stuck several times before being finally inserted. It was the wrong size, we would find out later, and he bled quite a lot. In addition he would need to be transported to a nearby children's hospital. His white blood cell count was 22,000 and he had a 103 fever.

After a few days of nothing be mouth and the NG tube as well as an iv of 40 mg of prednisone and anti-biotics, as well as fluconazole to resolve an overgrowth of candida in his esophagus he was released on Thanksgiving day.

A follow up endoscopy has shown that candida is gone and they assume it was the result of steroids taken last year for the flu. The immunologist has since cleared him for remicade.

At present our son is on a low residue diet, has had the prednisone dropped down to 20 mg and had his 1st remicade last Tuesday.

We are still in disbelief but are moving forward.

 

[Maya142]

Hi and welcome, but sorry you had to find us. What a story! Your poor kiddo.

How is he feeling now?

My daughter was diagnosed at 16 and was put on Remicade and MTX right away. Some kids respond to Remicade right away while others take longer -- she felt better after 4 infusions or so. 8 months later, her scopes were SO much better - all the little white ulcers in her colon were gone and the doc said her colon looked "beautiful." There was still some mild inflammation in her terminal ileum but she was so much better.

I hope Remicade works like magic for your son. As shocking as his diagnosis was, the good part is that he has been diagnosed and is being treated aggressively. Hopefully that will lead to remission for him. There have been several studies that show that biologics like Remicade, if used early in the disease, can actually change the course of the disease.

Both my girls are on biologics now and neither has had side effects from them, besides some tiredness the day after Remicade infusions. No increase in infections or anything like that.

This forum was a huge help to us during the first few months when my daughter was diagnosed. There is a LOT of information on here - have a look around.

Hang in there and take care of yourself - I'm sure this has been a LOT to take in. The best advice I heard during the first few months was that this is a marathon and not a sprint. Everything takes time.

Sending hugs!

 

[Sonnyboy66]

Thanks for the response.

Our son is feeling well at present with only a day of "that pain" coming back last week, prior to the Remicade, and a slight fever last night.

I hope your girls continue to feel well.

 

[crohnsinct]

hi there and welcome. My older daughter was dx'd at 12 in a dramatic fashion also and is a swimmer with a usa club team and runs on her high school track teams. She was also put on remicade at dx and it has been a miracle drug for us. It did take some time to work for her but once it did there was no looking back.

She had to taper her prednisone extremely slowly or symptoms would return so just fair warning many have to taper slowly until the maintenance med kicks in.

My younger daughter with crohns is a catcher on a travel softball team also!

Sounds like you have a good handle on things but we are here if you need us!

 

[kernelmom3]

I am so sorry your son (and you!) Have to go through this! My now 16 year old son was diagnosed in 2014 with a colonoscopy. The doc perforated his intestine and he needed emergency surgery. He went on Remicade and has been in remission for six months now! My 14 year old daughter was diagnosed two months ago and has been in and out of the hospital. They started Remicade but her obstruction got worse. They tried NG feeding but she wasn't responding to Remicade quickly enough so she just had a resection a few days ago and she's MUCH better! We also have a ten year old son (with no symptoms) that we're going to get tested.

I just wanted to reach out and give you ((((HUGS))) and tell you Remicade IS great!! It has been wonderful for our son and our daughter will probably stay on it even after resection. Good luck and keep us updated!

 

[Farmwife]

Hi and welcome but like Maya said, sorry you had to find us.
My girl was dx at 3 but is now 6.
She's been on Remicade for over a year now and no major problems.

I hope your child continues to do well and gets better and better.

 

[my little penguin]

Welcome my kiddo was dx at age 7 and is now 12.
He did not have diarrhea at all
Mainly had constipation and lack of weight gain with delayed growth later.

It takes time but will be ok eventually

 

[Mehita]

Welcome to the Forum! So sorry your kiddo has gone through so much. I have 15 year old who was dx'd at age eight. Lots of vomiting due to a stricture between the ages of 11 and 13, so I can kind of sympathize with you.

I'm assuming the bowel obstruction cleared up with the help of prednisone?

My son is also on Remicade and it's been a wonder drug for him.

Please feel free to vent, ask questions, and provide updates as time goes on. There are a lot of great parents here with a wide variety of experiences. Lots of kids on Remidade as well.

How is your son coping mentally?

 

[Sonnyboy66]

Thanks to everyone for the words of encouragement.

Our son is a little frustrated as he says, "I just want to be a normal kid again." We tell him he is normal just that he has Crohn's disease and that together we will work to get him feeling better. He has been very clinging to us since the initial trip to the hospital. We think he is a little leery of hospitals based upon what he went through and that fact that his mom was diagnosed with stage 2 breast cancer when he was 5 years old and he got to see the hair loss and other effects of surgeries, chemo and radiation at such an early age. We tried to shield him from most of the issues but told him that mommy was sick and was going take medicine to get better. My wife is in remission but the infusion suite at the hospital brings back all sorts of horrible feelings.

As for the obstruction it would appear it is better. The game plan is to do an MRI after the 3rd infusion of remicade and see what is up with that.

Thanks again and hoping that all your kids are feeling well.

 

[Maya142]

Seeing a psychologist who works with kids with chronic illnesses might help him learn how to deal with this better.

My daughter was very hesitant to see one, but thankfully, her GI insisted she go. It took some time, but she got used to her psychologist and now looks forward to going. It has made a world of difference - she is able to handle things much more easily and is much less anxious - despite many hospital stays this year, NG tubes, NJ tubes, GJ tube etc.

 

[Sascot]

Hi and welcome. Hope the treatments help get your son into remission. What a nightmare at the hospital, hope he has more positive experiences now.

 

[CrohnsKidMom]

Welcome to the forum! Your family has been through a lot, so it is understandable that your son is having a hard time. My son was dx'd at age 8, and is now 11. It is a hard road sometimes, but once the meds take affect and your son feels better, things will get easier. My son is on Remicade too. His bloodwork results immediately improved, but it was several months before his symptoms subsided. This is a great place to come for support and information. The parents here have been a wonderful help to me. I wish your son a quick and long lasting remission.

 

[my little penguin]

CCDs camp oasis helps them be normal
Contact your local ccfa and ask if any members are parents of young kids
This helped Ds tremdously to actually talk to another kid about anything except crohns ( they both knew they had crohns)
Also to know someone else had remicade etc.,.

 

[my little penguin]

http://www.ccfa.org/assets/pdfs/ccfa-online-comicbook.pdf


http://www.ccfa.org/assets/pdfs/activitybookweb.pdf


Both good books for him to read
We got hard copies from the Gi office and ccfa
Also helps

You can tell him Ds has swam competively since he was 6 and his coaches used to love when he had a swim meet right after remicade he would best all his times
It takes time but you will get to a new normal

 

[malorymug]

Hi. I'm so sorry for your diagnosis and the trauma that goes with an obstruction. I hope remicade is the magic medicine for your little one.

My guy is in therapy and it helps a lot. It helps him to have someone to talk to and to set goals and work on being a normal kid.

I may be in the minority here, but I absolutely hate the infusion center. Sure, it is pediatric and there is fun going on, but I don't like anything about it, and yes, it reminds me of my mom's chemo treatment. I just try to make the day all about my kid and we stop by a special ice cream shop on the way home.

This is a very overwhelming diagnosis to get, especially around the holidays. Be good to yourself and give yourself and the whole family a chance to get used to it. It feels like crohn's rules your world right now, but it won't always. It will get easier.

 

[my little penguin]

Good point ^^^^
Is his infusions at the children's hospital ???
If so child life can be called
They have a beads of courage program for crohns kids - a national program
Also they can help him deal with things at the hospital better

 

[kimmidwife]

Hi and welcome. So sorry to hear about your son.
Definitely look into the camp for him. It has helped a lot of the kids!
My daughter was diagnosed at age 11. She saw a therapist for a while and it was really helpful.

 

[Optimistic]

Hi there.
I hate to say "welcome". I know you are in shock and it breaks my heart to hear your son say he wants to be normal! As weird as your life has been the past month, it may seem like things have changed forever, but he is normal and will rejoin life once you sort out best treatment for him

My son started with what we thought was a stomach bug on a trip to Eastern Europe and then returned home to a full fledged meltdown in the hospital , similar to your son. He had no signs before and was already 6 feet tall, travel sports, blah blah. The time after diagnosis was hard bc it was ever present and he could search the Internet to read the bad stories. Steroids were his savior (getting off was a struggle) and eventually I stopped freaking out about IBD bc it wasn't going anywhere. Please know that we've gone from the Drs talking about indefinite NG tube etc and all the fun things you are going through now, to me thinking about it pretty much just when I check in here to see how everyone is doing and learn some more from the brain trust. or take him for appointments. He is back to his normal teenaged life of sports and too many video games, and just came to ask me if I would take him somewhere to eat at 11pm (sorry).

I can't stress enough the value of a good therapist for him. And for you, don't forget that many people with crohns aren't on forums because they are too busy living a good life. Keep walking and you'll find yourself in a better place.

Best to you.

 

[CarolinAlaska]

I'm sorry to hear what your son has gone through. My daughter was sick a long time prior to her diagnosis, and has only very slowly gotten better with this fall/winter having the most boulders in her path. It sounds like your son was very healthy prior to his obstruction, so I bet he bounces back very quickly once he finds the right combo for him. I think swimming is such an excellent sport for IBD kids, and your son is already doing it well. We're here if you have any questions.

 

[Sonnyboy66]

Thanks to everyone.

Our son is an only child and discusses everything with us and seems to be better with the "normal kid" issue. We did discuss camp with him previously, and he was not interested at all. Most of it being that it is a sleep away camp. He has never been one who would like a sleep away camp so his reaction did not surprise us. He has some really great friends and we are close to our priest, who visited him in the hospital brought messages of encouragement form our son's fellow altar boys. This made feel better.

The chief of surgery at the hospital also asked our son what the most important job in the world and he replied that being President of the United States was. He then proceeded to provide a history lesson that President Eisenhower, who was also the general of the allies, and led the allies to victory in World War II, had Crohn's disease. He did not have the medicines that we have and still rose to have the most important job on the world. He said that they did not know it at the time but it was later discovered. I checked it out and he is correct.

Our son is now interested in learning about Ike.

Best to all.

Son diagnosed with moderate/severe Crohn's disease on November 22, 2015. Age 10.

Current treatment:
Remicade (1st infusion 12-29-15);
Prednisone: 20 mg (reduced from 40 mg);
Ranitine: 150 mg 1x/day.

Previous treatment:
NG tube: 11-22-15 to 11-24-15;
Prednisone: 40 mg via iv;
anti-biotic via iv (5 days);
Fluconazole: 100 mg 1x/day for candida overgrowth

Medications:
Multi-vitamin

 

[Tesscorm]

Welcome! Although I am sorry that it is your son's illness that led you here. As I'm sure you've already found, this is a great group of parents and members who will become an incredible source of information and support to you! I'm not sure how I would have made it through the first year or so without them! :ghug:

My son was older than yours when he was diagnosed, almost 17 when diagnosed. However, once his treatment began he was soon back to his old life playing competitive sports, back to school and friends.

He is on remicade and tolerates it quite well. It has kept him in remission and, really, I think my son rarely thinks of crohns in between infusions.

While everyone needs to find what is comfortable for them, my son was very open re his diagnosis with his friends, hockey teammates, coaches, teachers, etc. and found all to be very supportive. After the initial questions of 'what is crohns?' and 'are you okay?', he found everyone offered him support while recovering and then treated him the same as before diagnosis once he was well - I believe this helped him realize that he was the same person and things were back to 'normal'.

I'm sorry your son had a bad experience with the ng tube. Supplemental enteral nutrition (EN) through ng tube was my son's initial treatment for two years. He ate a regular diet but inserted the tube nightly to supplement. As this wasn't enough to eliminate all inflammation, remicade was later added. I'm mentioning this only because it is a great way to supplement your son's nutrition and daily calories. However, it does not need to be through ng tube, nutritional shakes are often used. (We just found ingesting the formula overnight thru ng tube was easiest as it didn't interfere with his diet during the day.) Many of the kids here do use supplemental EN to boost their nutritional status during their developing years... just something to, perhaps, research and consider.

I hope remicade quickly brings your son to remission and that he's quickly back to his usual activities and life!

:ghug: