12 Year Old Son Might Have Crohn's - Need Advice

[motherof2]

Hi Everyone: I have a 12 year old son that had a colonoscopy and scope a few days ago. We have a follow up next week and the doctor suspects it's Crohn's Disease. Here is a background:

My older child had a bug of some sort in mid-August of 2013. I was about to take him to the doctor because I noticed he had diarrhea. Apparently his whole team had gone through something. Around September or so I noticed my 12 year old was going to the bathroom often. Prior to this he was never regular. We always thought that was an issue. Anyway, I noticed that he would go to the bathroom in the morning before or after breakfast and then in the evening before or after dinner. He had one incident where he had to go constantly while we were out.

I thought it was a bug because on 10/4 he complained of a sore throat and we kept him home from school. He still had a diarrhea, but it was never more than 2 times a day, in the morning and evening. We finally saw the doctor on a Tuesday and by Thursday they came back with labs showing he was malnourished and his platelets were at 700. My son was a chunky baby and he thinned out as a toddler. He was always thin, but had a little belly. Last October he weighed 93lbs and now he is 78lbs. I think the weight loss was lost during August until now. The most noticeable thing has been the fatigued.

Last Thursday, he started to feel better and we scheduled him with a GI doctor for Monday and a colonoscopy and scope on Tuesday. After this procedure, he was hungry and craving more food. He had a regular bowl movement this morning. No diarrhea.

I am a little skeptical of everything naturally and do not want to pump my child with drugs until we know more. He doesn't seem to have the "runs". He does talk about the rumbling in his stomach prior to going to the bathroom.

We would just like some answers, advice and comfort. I am hoping someone has something similar.

Thanks!

 

[madhav96001]

Hi Motherof2,
Hope everything will be back to normal, I hate to see another member join this forum(this sub-forum especially)
what makes him feel better, is he on any medication now? did your GI shown any pictures of his intestines? Usually your GI will immediately know after the scope if it crohn's, results are for confirmation.
how about his ESR levels of his blood tests? are they high??

wish you good luck and no Crohn's

Madhav

 

[Jmrogers4]

Welcome Motherof2,
Did the doctor say why he suspects Crohn's? Something he saw during the scopes? I hope he does not have Crohn's but if he does you have certainly come to the right place.
How has his growth been? My son was diagnosed at 10, his symptoms at that time was weight loss, lack of hunger, stomach pains, anemia, fatigue, lack of growth. He did not have diarrhea but many other kids have, nor did he ever have blood in his stool.
I hope things go well at the appointment and you get answers.

 

[CrohnsKidMom]

Welcome motherof2! My 8 yr old son had some of the same symptoms. In Jan '13 he got what seemed like a flu. But then it wouldn't go away. Swollen belly, no appetite, pain around belly button after eating, fatigue, fever, night sweats, anemia, and weight loss. He never had diarrhea, and has always suffered from constipation. The tests that were done on my son were, bloodwork, ultrasound (to rule out blockage or appendix), MRE, indium scan (which was very useful in showing where the inflammation was located), and scopes. It was the scopes and biopsies that confirmed the dx. Our treatment options were EEN with NG tube or prednisone-either one for 3 months, while starting a maintenance med. No treatment was started until the dx was confirmed however. Take care, I hope you get some solid answers soon.

 

[Skymama]

He doesn't seem to have the "runs". He does talk about the rumbling in his stomach prior to going to the bathroom.

My son who is 16 never really had the "runs" either. He tends to get constipated. He gets the rumbling in his stomach too. Before he was diagnosed with Crohn's we thought he just had a sensitive stomach and tried to cut out fatty foods and dairy. When we ended up taking him in to the DR because of losing weight and bloody BM we found out he was malnourished too. He ended up taking Prednisone plus a ton of different vitamins and later Methotrexate injections. He's doing so much better now that the GI DR said we may be able to start taking Methotrexate pills instead of the injections. He has put on weight and hardly gets a tummy ache anymore (he does not eat nuts, seeds or raw veggies and still tries do avoid foods that he knows will trigger him, like french fries).
The whole diagnosis process was pretty scary and I went into a bit of denial wondering if the DR had it right. But I got over that pretty quick. It will get better! :ghug:

 

[motherof2]

Hello Everyone! Thank you for the friendly welcome and the feedback. Crohn's seems so simple but complicated at the same time. We have our follow up tomorrow. Since his colonoscopy and scope on Tuesday, his appetite has returned and his bowel movements are regular. It seems so normal now to check when he goes to the bathroom.

Prior to all of this, my son was never regular. He would go once every few days. Sometimes just once a week. I guess I am trying to understand and cope with information and just backtracking to everything we have gone through with him. I am wondering if there is some sort of alternative to medication, etc.

I am just trying to understand all of this and my son is very routine and I see that it's distressing to miss school for appointments, etc. I will let you all know what happens at the doctor's office tomorrow.

Thank you again!

 

[Amy2]

There are alternatives to the strong drugs, for some people. My son achieved remission through a combination of a 3 day course of steroids, 6 weeks of EEN and Pentasa 3 xs a day. He's being monitored by his GI and he has been in remission for 6 months, now. My son follows the SCD with the exception of Peptamen, which is not SCD legal.

 

[CrohnsKidMom]

I'm glad to hear that your son's appetite has returned. It sounds like he is feeling a bit better.
I struggled with putting my son on meds too. I have done some reading about naturopathic remedies, but it seems most people have had limited success with that. Some people have found that special diets help, like paleo or SCD. Our GI said that even with EEN our son would still be put on a drug for maintenance. So frustrating! What we really need is a cure! Take care!

 

[Mehita]

My son usually feels pretty good after scopes. I sometimes wonder if the clean out is just what he needed. Interesting, huh? Unfortunately, it doesn't usually last, so keep an eye on him.

Are you in the US? If so, and if you end up with an official Crohn's or UC dx, you'll want to start looking into 504 plans. It will help a ton with missed school.

Good luck tomorrow!

 

[Dutch941]

Mother of 2,
Welcome and so sorry to hear you are going through this. Your story is very close to my sons. He was 12 when diagnosed after similar circumstances as your son. Fear not. A positive outlook is absolutely essential. For starters I'm not sure why your dr thinks crohns unless he saw something on the colonoscopy.....in our case our GI discussed diagnosis immediately following the colonoscopy. Try not to become overwhelmingly concerned until you actually know what you're dealing with. I know that's difficult and I am sure I didn't follow that same advice..I was a wreck. But in the end..we didn't have crohns(assumedly). We had UC (bad enough, but not as difficult as crohns. In addition we were diagnosed as severe. Here we are two years and change later..and the diagnosis is changed to minor to moderate. So, for all my worries and fears...I've found that with time, support, good decisions, things can get better. This is that kind of illness. It's frustrating...it's hard to deal with....worrisome. It's important to stay level and deal with the issues that arise as they arise. Fix what you can.....deal with what you can't head on. Love him and be there for him. There is plenty of hope and optimism mixed in with all that is bad about these issues.
Please keep us updated ....
Don

 

[motherof2]

Hi Everyone: I truly appreciate all this advice. He was officially diagnosed with Crohn's last Monday and given the treatment options. We are planning on doing the the SCD diet. The 1:1500 chance of lymphoma as a side effect for all the drugs they suggested really scares us. We planned on starting the diet next Monday. Today my son got sick at school. He has a fever now and his stomach has not stopped hurting all day. He has never felt this bad before he got diagnosed. This is why I am not a fan of doctors. We finally had to let his classmates know because they all had begun to worry about him, especially after getting sick in school.

Can someone let me know what it's like to deal with this? Will he be sick all the time?

I just feel so helpless and today he just cried because he felt so sick and frustrated. My son is a pretty tough kid but not being able to do just regular things because he is tired has been difficult.

I appreciate any advice or just what this is like day to day.

Thank you!

 

[kiny]

No one is a fan of doctors though. But you said your child has lost considerable weight and is in pain. The SCD diet isn't a form of treatment and it's a good way to lose a lot more weight since it eliminates all complex carbs from the diet, which is your main source of gaining weight, 60% of your calories should be coming from carbs. I would really reconsider and listen to what the doctors have to say.

If not eating rice and potatoes would make us better that would be great, the reality is different, doctors go by what they know works, which is why they're not a fan of diets that have never shown any benefit for crohn's disease.

 

[my little penguin]

You are not going to like this but diet modification ( SCD) really have a better chance of working in mild cases. Being diagnosed as a child increases the risk of not being mild.
Your child will probably feel sick until you fix the inflammation with the right drug period.
No one can tell you the right drug combo since that is trial and error but the reality is he will need a drug in order to feel better.
Kids tend to have a severe disease course .

The only diet that has been proven to fix kids is EEN


As for the risk of lymphoma - untreated or under- treated crohn's is deadly .
Some parents on here nearly lost their children due to crohn's.

Look at the risks
Death by car accident is
1 in 250
Drowning
1 in 1000
T cell lymphoma without any meds for anyone on the street
2 in 10000
T cell lymphoma with biologics plus immunosuppressants
4 in 10000.

None of us want our kids on these drugs period
But being in pain daily
Forming structures or having an obstruction due to inflammation that was left unchecked
Or allowed to fester is scary.
Living without a small intestine IS not an option.

So we as parents try to be brave and give our kids the best chance at having the healthiest intestines for as long as possible until less scary drugs come along .

At the beginning I didn't even want my kid on pentasa
I cried and cried over the drugs.
I was sticking with EEN and never giving pred at all.

We have all been there
But hopefully you can get to a place quickly that will let the doctors help
Your child because finding the right drug combo can take up to a year or two for some kids .
As a parent it is very hard to watch and feel helpless.

There is no right or wrong answer just whatever gets your kid feeling better.
The odds and study tend to point to an immunosuppressant with EEN or pred until an immunosuppressant has time to kick in.

Please read our parent research section
It may help you get to a good point.

http://www.naspghan.org/user-assets...nteral_Nutrition_for_the_Control_of.29[1].pdf


Here is the link
http://www.crohnsforum.com/showthread.php?t=43002



I can say as izzismom said once
The right meds that makes your child be your child again and feel well
Starts to look like a basket of kittens when they work.

Doctors prescribe things that have a higher benefit than risk.
Then they monitor things very very closely through blood work and tests
So that any issues are dealt with before they become a problem.

I wish you could just stop eating things and fix our kids honestly I do
But most kids with crohn's it simple doesn't work that way.

Crohn's is an evil evil disease .
So take time to process and cry
But please look at the read each papers and options so give yourself
Every options to get your kid back ASAP before damage is done .

 

[Sascot]

Hi and welcome. Sorry to hear the diagnosis is confirmed. My son was 12 when diagnosed and went straight onto the Modulen liquid diet for 8 weeks (standard first treatment in Scotland). He had to have the NG tube because he hated the taste. It certainly worked wonders and got rid of all tummy pains. This is certainly something to keep in mind if you want to avoid Prednisone.
I also was terrified about the cancer risks of the meds, and put off getting them for over 6 months. Please be careful with going down that route as uncontrolled Crohns is not a pretty thing. My son ended on months of antibiotics and 2 surgeries for an abscess on his bottom (he has a peri-anal fistula), and I do wonder if we had taken the meds, whether this could have been avoided.
Good luck with the scd diet, hope it controls some of his symptoms.