Diagnosis for 16 yr old

[Tesscorm]

My son was very recently diagnosed with Crohn's and I'm feeling as if the more I read, the more questions I have! Even more confusing is that his symptoms seem to be quite different from most of the other members' stories that I've read (perhaps because of his age???). His symptoms started in March and would be a couple of days of tiredness, followed by 3-4 days of fever (sometimes quite high) accompanied by diarrhea (which he would control with OTC anti-diarrhea pills) and a loss of appetite. While the symptoms were not pleasant, neither were they excrutiating - for the most part, he felt 'under the weather' but well enough to continue going to school, playing sports (except when the fever would appear). These symptoms would completely disappear for a week to two and then return. (No abdominal pains, no bleeding) However, during this time, he lost approx. 15 lbs. After his doctor was unable to discover what was causing these symptoms to appear, disappear, etc., we took him to the hospital. He was admitted, kept for a week while tests were run (ultrasound, bloodwork, stool sample, colonoscopy and endoscopy) and then diagnosed with Crohn's in the small intestine.

Currently, his only treatment is a six week nutritional liquid diet. He is fed Tolorex each night for 10 hours, during the day he is allowed only broths, jellos, popsicles, etc. (he is in week 3 of this treatment). He has had no further symptoms, has been back to school since his diagnosis, his energy level is back to normal, has gained approx. 6-7 pounds and is back to sports and all his other activities (he would probably have gained more weight, however, he is EXTREMELY active - 2 hours per day of sports, weights, cardio... plus 1-2 hockey games a week - hard to keep a 16 year old boy down!).

His symptoms seem to be so atypical from what I've read, I'm wondering if anyone else has had similar symptoms? Also, has anyone had any experience with nutritional food therapy?

Also wanted to say I'm very glad I found this site!!! I've found so much info and have found the members to be very supportive!

 

[SarahAnne]

Tess, not entirely sure about all of it, but I will help with what I can....

The symptoms sound like Crohns, there is a possibility that your son doesn't have the severe pain most of us have because his intestines aren't as inflamed. He's young and there's a good chance the disease hasn't progressed beyond "mild", rather than moderate or severe. I was put on a liquid diet immediately after being diagnosed in an effort to help give my bowel time to calm down. I was allowed jello, broth, etc. after two months. I was on for 3 months total, then went to a soft food diet. My disease was very advanced when I was diagnosed though and I was also on high doses of pred, as well as asacol and pentasa.

I believe the TPN would have been good for me if my CD wasn't so severe. Unfortunately, 3 months after it I had to have surgery.

Good luck with your son. Hopefully, your doctor has caught it early enough that he can keep it manageable, that is the most important thing to avoiding a flare up!

 

[Jer's Girl]

Welcome Tess! Your son’s symptoms sound pretty text book to me (or as text book as it can be with Crohns). Maybe he just has mild Crohns, which is still hard, but a bit easier to live with. We are all a little different here.

Good luck to you and your son, and welcome to the forum!

 

[Tesscorm]

Thanks for your replies. From all I've read on this forum, it does appear that everyone's symptoms are quite individual. We have our first follow up appointment in two weeks, when I'm hoping to get more answers (and will probably leave with even more questions!). But I am finding it a bit disconcerting not knowing what to expect, what is typical, what will be done. I am worried about the side effects of medications he may be given but I suppose I"ll just have to wait to see how he responds to this therapy and the recommendations of his doctor.

 

[David]

Greetings Tess and my most sincere of welcomes I'm sorry your son and your family is having to deal with this, it can be tough. *hugs* to you.

I just wanted to chime in and let you know about our Parents of Kids with IBD forum in case you hadn't seen that. You may find it comforting or educational to connect with some of the other parents in there.

I wish you and your son nothing but the best.

 

[Crohn's Mom]

Hi Tess

I'm sorry your son has been diagnosed, but I am happy to hear he has a mild case.

My daughter is 18 and has been run through the mill with CD, but she has never been treated by TPN or the such, so I'm sorry I can't help you out with that.
In any case tho...come join us in the parents forum! There are a ton of friendly and knowledgable parents that would be happy to welcome you as well!
Welcome !

hugs,
~T~

 

[ameslouise]

Hi Tess and Welcome!

You are right that every one of us has kind of a different case of Crohns - symptoms are different and treatments are different. Glad to hear that the current plan for your son with the TPN is working well so far! I hope it continues!

You'll find lots of good support and advice here for parents o f kids with IBD!

- Amy

 

[Dogluv]

Hi! My diagnosis started off just like your sons with the loss of appetite, weight loss, and Diarrhea. I'm also a teen so I know it's hard! My first treatment was remicade but the side effects were to severe so now I'm also on an elemental diet. It seems to be working, (I haven't seen any symptoms since I started) And I've gained back 10 pounds!

 

[Tesscorm]

Hi Dogluv

I hope the elemental diet is still working for you! It seems to be working for my son, he still has 3 weeks to go but he's dealing with the 'not eating' fairly well (although some hard moments, for sure!). Hopefully, his good response will continue!

Are you taking any other medication right now?

 

[Dogluv]

Hi! I'm still symptom free, (yay!) And I hope this will continue!!! I'm glad it's still working for your son! In the usa this treatment isn't used much (I'm the only patient my GI doc has on this treatment) so it's nice to hear it's working for someone else! It's defiantly been hard, I can't even remember how many times I've wanted just a bite, but I know it would ruin progress.
And to awnswer your question No I'm not on any medications, which means the diets working on it's own!

 

[Misty-Eyed]

Hi Tess,

I started off the same when my symptoms started appearing. I started to lose weight, went off food, had a lack of energy and didn't want to do anything. Without a diagnosis I slowly got worse and worse. I had bad diarrhea and stomach pains which then turned into vomiting after eating. It was pretty bad. After a year I literally looked like a skellington and eventually I was diagnosed with crohn's.

I'd say that luckily your son was diagnosed before he got too ill which is as it should be! My consultant at the time did say that he didn't want me joining support groups as he didn't want to scare me and my parents about how bad some people get and operations etc.

I have been on an elemental diet. I started on it aged 12 and was on it a long time. Unfortunately it didn't work for me but I've heard that it is used more often in newly diagnosed children/teens to (successfully) induce remission. It's certainly a lot more healthy than the side effects you'd find with other medications. Seems like it's working for your son which is brilliant! Here's to hoping that he will continue to do well on it!

 

[Tesscorm]

Michelle, Yes, from some other the posts i've read, it does seem that we were lucky to have him diagnosed so quickly. He was only sick, off and on, for 6-8 weeks, although, in hindsight, there were some other very minor symptoms earlier (i.e. very smelly BMs). Thanks for your good wishes!

Dogluv, I'm so glad it's working for you! I've heard that this treatment is very rarely used in the US and, although a bit more common in Canada, still not as readily prescribed as in Europe. Not sure why as it seems to have good results for many people! The only medication he is currently taking is an antacid. And, yes, he has definitely been tempted!!! He was at his school's banquet and his table was right next to the bbq. To top it off, each student was given one 'ticket' for their meal, since he cudn't eat his, his buddy asked him if he would go pick up his meal anyway so that he could have it!! My son said it was brutal, having to line up and pick up what is one of his favourite meals and then pass it on to someone else! LOL But, like you, he doesn't want to ruin the progress he's made. Good luck to you!!! Let me know how you're doing!

 

[crazycanuck]

Hi there welcome to the forums.

I too was diagnosed at 16. Symptoms are a difficult one to say what is really typcial although there are some much more common symptoms among us. I too was on a liquid diet but that was because they thought I had a parasite or worm of some sort and wanted to try that before the colonscopy for Crohn's. It's a difficult diet for sure I believe for 2 weeks I lived on Jell-o (which I couldn't ever look at the same again), white grape juice mixed with 7-up, and plain soup broth.

I really hope he gets better soon and best of luck with everything for you and your family.


Oh and p.s. tell him to be careful with hockey right now when he isn't used to his 'new' weight. Almost killed myself as I was diagnosed and on the liquid diet in the middle of tryouts.... I was 30 lbs lighter than normal and you forget sometimes.

 

[Tesscorm]

I so agree with trying to limit his hockey!! He was also in the middle of try-outs when he was, I suppose, flaring, couple of weeks before his diagnosis!! Really felt for him, lots of pressure for a kid who's not feeling well... but, team-wise it all turned out well. And, you're absolutely right about taking it easy! Wish he would listen but, I think after two ball hockey games last weekend, he was exhausted and I think he realized it as well. What happened to you when you were trying out while on the liquid diet? Should we be keeping him from hockey completely right now?

Thankfully school's done now and so are the phys.ed. classes (the '2 hours per day'). Unbelievably, even after a meeting with his phys.ed. teachers and principal to explain the situation and his current limitations, one phys.ed. was pushing him to 'at least jog if you can't run' during a long distance run, after my son complained of pain in his side! Wanted to go in and throttle the teacher!!!

Hoping he'll put on a bit more weight now!

 

[Dogluv]

Hi! I just wanted to update you on how I'm doing! I only have 11 days left until I go to the doctor to talk about eating again (yay!!!!!), and to get blood tests to make sure everything is in order. Im still doing great, and have been symptom free!!!
I was wondering if your son puts in an ng tube for his night feedings? Or does he have a g tube?

 

[Tesscorm]

Hi Dogluv,

My son uses an NG tube that he inserts nightly. Has had no problem with this and gets it done in 5-6 seconds (had me time him one evening! LOL) He has another 18 days to go! I know he's dying to eat, something!, anything!!! I wish there was something I could do to help him with this! He's actually been super about it but, you would know better than I, how hard it is.

let me know how it goes for you at your dr apptmt. and can you let me know what tests dr does? my son's apptmt is june 30 but, nurse told me that no tests will be run, so i'm not sure how they are going to decide what to do next if they don't know where he stands??? so I'd really appreciate it if you cud let me know what tests they run on you.

But, stay strong! I really have tons of admiration for you and my son!! You guys really are amazing!

 

[Dogluv]

Wow! It's amazing he puts in an ng tube every night! When I was in the hospital a few months ago I had to have one because of excess air in my stomach, and i could barly handle having them put it in, they even gave me "happy meds" which didn't help at all! This was the only time I cried while I was in the hospital! I also want to eat sooo badly, and each day I know I'm getting closer!
when I go in I'll definatly see which tests I'm getting done! Good luck to you and your son!!!

 

[Tesscorm]

They didn't give my son any options other than the NG tube??? So, I guess, he just thought, well, if I've gotta do it, let's just do it. Like you, and every one on the forum, we all do what we have to! I had a dog when I was young who became diabetic, my choices were to let her be put to sleep or give her a needle every day. Wudn't dream of putting her to sleep just bcz I was too freaked about giving her a needle... so, had to do it.

How do you take the elemental formula? I know of heard of some drinkable versions but I don't think they are available in Canada yet...

 

[Dogluv]

I drink mine, I'm on peptamen 1.5 and I do 5 cans a day. The only down side is that they taste awful. I wonder if peptamen is available in Canada? I've also heard of a formula called vivonex which I believe can be taken by mouth.

 

[Tesscorm]

FYI, before your next apptmt, something your dr may suggest or you may want to ask about??? What was suggested to us at the hospital, assuming this therapy puts him into remission, he may be asked to continue this liquid diet for a year on a maintenance plan. This means he will be able to eat whatever he'd like (or whatever doesn't bother him) during the day but, for 4-5 nights a week, he would continue with the formula but with only half the quantity. (Right now, he has 10 packets of Tolorex per night, every night). Apparently, there has been some success in maintaining remission by following this 'maintenance' liquid therapy.

Good luck!

 

[Dogluv]

I think my doc did mention something about that when I started and I think that is what he is going to want me to do. I'll definitely discuss that with him when I go to my appointment. It seems like a good option.
I was wondering When your son does his night feedings what is his ng tube hooked up to? Is it hard to use?

 

[Tesscorm]

We have an IV stand from which we hang the bag with formula and the pump (size of the pump is about 1/2 a loaf of bread). He needs 2000 ml per night. We were told that he can comfortably run the pump at 200-300 ml per hour (at 200ml, it takes 10 hours). So, normally, he starts it at 9pm, runs until 7am, approx. when he gets up for school. If he goes out on a weeknight, we'll run the formula at 300 ml per hour to shorten the number of hours. On weekends, he usually doesn't start it until 12am or later, but then doesn't have to go out anywhere in the morning anyway.

It's not hard... just need to plan a bit. Once or twice, he got a bit annoyed when he'd settled down in one room and forgot something in another room as he has to drag the whole thing with him but, really, that's only happened once or twice (and the stand is on wheels, not too hard to move). Normally, he just moves it with him room to room, floor to floor (he's called it his own personal R2D2 - or whatever the robot is called on Star Wars). Being hooked up to it overnight doesn't bother him at all while he's sleeping. At first the noise from the pump kept him up but only for a few nights. And he's even had friends sleep over, he just warned them about the pump noise (which isn't that loud) but he's had 2 or 3 friends all sleep over at one time and it didn't bother anyone. And, he's not concerned about anyone seeing him with the NG tube.. actually, when friends are over, lets them all watch him put it in...

The 'prep' is only putting in the NG tube, which like I said, literally just takes him seconds to do. Even once the NG is in, he can still have some broth or freezies if he wants. (I do the other 'prep' - make the formula as it's in powder form, and wash the formula bag.)

Now that he's used the NG tube and is comfortable with it, I am very certain that if he were given the choice of drinking something he didn't like or using the NG tube, he'd go with the tube. Especially as the maintenance will be even less annoying in the sense that it will only be for 4-5 hours.

Hope that helps, let me know if you have any other questions...

 

[Dogluv]

Thanks for all the information!!! Its great to talk to someone who has experience with it!!! Good luck to you and your son!

 

[Tesscorm]

Good luck too... just let me know if you have any other questions... I'll watch for your message on this thread or feel free to PM me.

 

[Karissa]

Welcome! The no eating thing is tough- your son can stick it out though! If it makes him feel better, it's working! His symptoms sound like a mild case of Crohn's in their beginning stages, which is great because you guys will be ahead of the game. I'm twenty, and dealt with Crohn's throughout my teen years, so if you or your son have any questions, feel free to ask!

-Karissa

 

[Tesscorm]

Thanks Karissa, I've learned alot in the last few weeks and, as time goes on, I'm sure I'll have lots more questions! He's been pretty relaxed with it all, so far. I'm sure the fact that his symptoms weren't extreme and that he's responded so well to the treatment, thus far, has made things relatively easy for him (although in no way am i saying that he's happy about the 'not eating' or having to 'schedule' around the feeding is easy!). I guess we have to see what happens at his upcoming dr apptmt and then how he responds to the reintroduction of food. I'm really hoping, praying that all goes well for him!