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Crohn's Disease Forum

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Joined
Aug 10, 2012
Messages
195
Location
Somerset, UK
My Son, who will be 11 next week, was diagnosed with Crohns about 5 weeks ago. He has been on a liquid diet of Modulen ever since. On Monday in addition to the Modulen he started on 40 mg of Prednisolone. I appreciate that everyone is different but I was hoping that things might have settled down a little more than they have by now. He is getting some energy back and can cope with walking the dog with me for about half an hour a day but not much more. Also he is still passing blood on bowel movements, I assumed the steroids would knock this on the head after 5 days?

As you can guess this is all new to us, so any help would be appreciated.

Thanks.

Andrea
 
Hi and welcome. Sorry your son is still feeling so bad. Based on other members here, seems like 10 years old is a common age for Crohn's to start. I too think prednisone seems to help some people rather quickly ... but others either longer or it does not seem to help much at all. I am sure you will get some good replies here. There are lots of treatments for Crohn's.
 
Welcome Andrea. Sorry you have to join us but you are in good company.

Perhaps you could tell us some more about your son's diagnosis and situation. What tests did he have that led to his diagnosis? What have you been told about the severity of his disease and the location? For instance does he have ulcers, strictures, is there inflammation in the colon, TI (short for terminal ileum), etc.?

Are you in the US or Europe or ? Is he being treated by a doctor that specializes in treating pediatric IBD?

5 days is not very long to give the prednisone to work depending on the severity of your son's illness. Did he appear to have any improvement on the Modulen? How much?

Did your son's doctor give you any idea of his long term plan for your son? Is he still on the Modulen or did he let him go back on regular food?

Prednisone is not a cure or should not be used as a long term treatment of Crohn's. It suppresses the inflammation but at the cost of damage to the bones and sometimes to other body systems. For example it can cause diabetes and you must be very vigilant for signs of infection like fever, rashes or redness at sites of cuts, etc. since the normal signs of infection may not be present to the same degree as normal.

AS for exercise and such, I would encourage your son to keep to a normal routine to the extent he is able. But I would not push him too much. His body is very sick and you do not want him getting any sicker. It can be hard to know what to do but I would say you should trust your instincts and do what you think is best.

If you notice that doing the walk lifts his spirits then by all means do the walk. You may need to go super slow and pause a couple times. Or you may need to shorten it etc. If doing the walk seems to just exhaust him and make him feel really bad then perhaps you could find something else to do together - sit outside and play a game of cards or throw the ball for the dog or something.

Hugs. He will get better but it is probably going to take a while and the ride may be a bit bumpy at first.
 
Just a bit more info. We're in the UK, son being seen Paediatric IBD Dr now after local hospital spent several weeks sending us home and treating as Herpes.

Problems initially showed in the mouth, ended up with 20 plus ulcers in mouth and throat, plus weight loss as unable to eat. He's also always had tummy problems, frequent upsets and pain. He had scopes up and down, it showed oral and oesophageal ulcers, stomach normal and terminal ileum - possible ileitis.

Mouth has now settled down although tongue has been left with a very strange edge to it! His BM when we initially went into hospital weren't causing any problems but then this isn't surprising as he wasn't eating but as soon as they started him on NG feed the pain came back. Initially Modulen has helped and he has put weight back on but for the last two weeks he has passed blood with every BM. This is why they started the steroids. At the moment he is still on Modulen with no food and Steroids. This is why I was hoping for a quicker response with the energy levels. We go back next Wednesday so fingers crossed they can look at things again then. He so wants to be able to eat for his birthday a week today!

I feel blessed to have found this forum. Was feeling very alone; hate to think what is really going on in his head.

Andrea x
 
Hi and welcome,
So sorry to read what your poor kid has been through. I hope he gets to eat some cake.
My little farm girl named Grace is 3 1/2. Still Undiagnosed at this point.
No need to feel alone. So many have walked and are walking daily in your shoes. It's hard to believe but it will get better. Your family will learn how to handle this and get more comfortable with his condition. I'm not saying you all will get "use" to it, I don't think any of us can ever get "use" to it. But with a forum like this it makes you feel like your not alone.

Welcome aboard,
Farmwife
 
Sorry your son is feeling bad. Hope the meds kick in soon and he is feeling better and able to eat soon. I have a 13 year old son and know it is hard for them when food is the enemy and they want to eat but are afraid to eat. Keep us posted and don't hesitate to ask questions. This forum is fabulous place to ask questions and you always get a quick response. :D
 
Hi and welcome!! This is a wonderful forum for info and support. We are also in the UK and my son was initially treated with 8 weeks Modulen through the NG tube (Crusha didn't work ;)). Sorry I have no experience with bleeding with a bm, as my son only had tummy pain (and now a fistula). The Modulen worked wonders with him and had him symptom free for a few months.
I hope your son starts feeling better soon, have they started any meds other than the Pred?
 
:welcome: Andrea

So sorry to hear your son has been diagnosed with Crohn's but glad that you have found all of us. This forum has saved my sanity a number of times. My son is also 11 and was diagnosed with Crohn's 6 months ago. He did something simmilar to what your son is doing and started out on prednisone and after 5 weeks of that added EN for 6 weeks. My son struggled with low energy levels and a persistent terrible feeling (an overall yucky feeling). He was only able to attend about 2 hours of school a day from January to June and many days wasn't able to go at all. He too had many days were he was only able to manage a short walk with me and the dog, it's a good thing we have a very SLOW Basset Hound. :ysmile: At long last my son's energy levels have returned to near normal for most, but still not quite all, days. It has been a long road. I figure it took him a long time to recover from all the damage that occurred while he was undiagnosed. Just wanted to let you know that you are not alone and it does get better, it just takes a while sometimes. :voodoo:

Have they started your son on a maintenance medication?

I have my fingers crossed that he can eat a little something on his birthday!
 
Hi Andrea
I sent you a private message yesterday to welcome you not sure if you got it. Welcome to our group. Sorry you had to find us but glad you did!
 
Hi Ands and :welcome:

How are things going with your boy?

Just in relation to his energy levels, since he has terminal ileum involvement has he had blood test levels done for B12, Folate, Iron Stores and Vit D?

Dusty. xxx
 
Welcome to the group. My son was dx last fall at age 10 The pred worked within a week for him but everyone is different. Hope your son is doing better.
 
Hi! Things looking much better thanks. Steroid working and he's now back on food, had his last glass of Modulen this evening! He's now worried as meds are making him SO hungry; he's worried about gaining weight.

He had bloods done again last week and as we've not heard hoping all are OK. His energy levels have really picked up and we even managed to go away for the weekend for his birthday.

Let's hope things continue this way, and stay this way once the meds stop. Still have a long road ahead I know and am beginning to get my head around it all.

Your support is fantastic.

:ysmile:
 
Hello and welcome to the group. Sorry I was away when you joined but I am so glad that things are looking better. Prednisone on exclusive EN?! Yikes! That must have been torture for the poor kid. My daughter also did 6 weeks of EN. I admire the strength and determination of these kids so much!
 
Welcome to the group! Hope your little one is doing okay! My son was diagnosed yesterday and he is 9, so we are at the beginning of this journey x
 
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