Young children and Crohns disease

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helly25

Joined
Oct 7, 2008
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young children and Crohns disease

Hi there

Just wondering how many 8 year olds are out there with Crohns?
My grandson has just been diagnosed and went into hospital yesterday to start a liquid diet. We think it would be good to hear from you all as we are all upset and my daughter particularly. Regards Helly
 
hi Helly & welcome to the forum. i don't know any children with Crohns at all, and also don't know whereabouts you're located, but i've found a link which might be helpful to you. it is from NACC (National Association of Crohns and Colitis) which is a UK based organisation, but even if you're not in the UK, the info might of help.

http://www.nacc.org.uk/content/services/parents.asp

i really hope your grandson's symptoms calm down soon! please let us know how he goes on.
 
Welcome helly25.

I am sorry that your grandson was diagnosed with Crohn's Disease, but unfortunately this is not that rare. Crohn's Disease can and does affect people of all ages and some people are even diagnosed or have surgery before they are 1 year old.

Benig diagnosed in childhood does not mean that a child will have a lifetime of trouble there... greater symptoms now may be treated in a number of ways and many people are able to better control their disease as they learn more about it and how to understand their bodies.

Hopefully the liquid diet works... please keep us updated!
 
young children and Crohn's

Hi everyone
Just to say I visited my grandson Joe in hospital ,where he is with his mum.
He is still on the liquid diet and he will be on it for 8 weeks!!!!He's doing so an so .Does not like the flavours.The liquid he's taking is MODULAN.Has anyone heard of it?
He should be home Friday to continue with regime
regards Helly
 
I was almost put on Modulen a while back. Managed to avoid it though.

You can get additional flavour packs to make it a bit more interesting.
 
Very sorry to hear about you grandson.
My son was diagnosed with this disease at the age of 14. If you ask me he had this problem a lot longer than than that.

I know exactly the way your daughter is feeling right now and, although, like the rest of us, she will have to learn to deal with it, it does take a while. As a mother what I keep telling myself is that, right now this disease has control of him and we will do what it takes to get control of it and keep it that way.
 
Hi Helly!

My seven year old son, Sam, has just been diagnosed with Crohn's, and he is starting Modulen tomorrow. He's going to be staying on it for 8 weeks, too. Our doctor told us it can be flavoured with strawberry Nesquik powder, if you have that available there? Please let us know how he's going, I'd love to hear from someone who is going through the same thing.

:)
 
young children wth Crohn's

Hi klapacious

So...we have the boys on a bevie hey!!! lets hope it helps.joe is on it for 8 weeks.Its his 2nd week today but Lisa, my daughter, wants to keep things as normal as possible,so he went to school today.She went with him and she was hoping to go to work by lunchtime ,if he was ok.i expect she will call later when the children are in bed ,and she and her husband had dinner.Keep in touch .Its good to chat about things :) byeeeee
 
It just really sucks reading about these poor little innocent kids. I feel so bad for all of them. If I could give my life to heal the children I would.
 
hi thanks 4 thinking of the young ones Joe is trying to take in his stride at the moment .look after yourself . Helly
 
hi everybody
little joe is still hanging in there.Modulen diet continues.I am with him today cos he was all washed out today,and couldnt manage school.The doctors said he should be feeling a little better ,on his 2nd week of modulen but the fact is he is still having diorrhoea in the morningsDid you know you can get modulen flavourings which can also be obtained on prescription (in england) byeee
 
Hi, I just read this. I'm young, in my teens actually. While I was diagnosed in September, I have always had tummy troubles. Whether or not it was Crohn's back then, guess I'll never know, but there are some other people my age on here as well. Let know how your grandson Joe is doing.
 
Hi there I like your dogs.I hope you are feeling better today.
Joe was not feeling good on Modulen,so he has been prescribed Prednisolone for 9 weeks.He has been put on a normal healthy diet.my daughter is anxious about this,in case it aggravates his tummy.
 
klapaucius said:
Hi Helly!

My seven year old son, Sam, has just been diagnosed with Crohn's, and he is starting Modulen tomorrow. He's going to be staying on it for 8 weeks, too. Our doctor told us it can be flavoured with strawberry Nesquik powder, if you have that available there? Please let us know how he's going, I'd love to hear from someone who is going through the same thing.

:)
Click to expand...
Hi there how rae you doing? and Sam ,how is he coping with his Modulen? Joe is off it ,as you can see on my post Lets hope this works better byeeee
 
hi everyone
Just an update
my grandson ,8 years old,was put on prednisolone 2 weeks ago .he is much better at the moment.He even had a little holiday and has gone back to school with some supervision.Good news for a change regards Helly
 
Hi Helly. It is good to hear your grandson is doing better, but Prednisone is a serious drug and you should take care that he gets enough protein, calcium and vitamines while on it. Also decrease his salt intake.
 
yoing children crohns

hi
thanks 4 advice i will look at it carefully this is the great oomph about this place
EVERYBODY CARES Love Helly
 
it will get better

hi helly,
my sister was diagnosed at 9, she is 26 now, but back then it took the hospital a long time to confirm this was crohns, she was very sick at the time and I remember her being very very thin, the doctors were checking her for everything celiac etc,,,but my mum who also has crohns kept telling docs, she new this is what her daughter had and eventually she was diagnosed with crohns, she was treated and sent home with feeding tube to rest her bowl, i remember this went on for a long time , at 13 she had operation to remove some of her small bowl , this was the best thing to happen for her she had years of good health with a few flare ups and still sometimes recieves flixiab "i think thats how you spell it" but i just want you to know that now she is getting married next year and has been well for a few years now so i know things look bad now but they will get better im sure, but i do know what it is like when a child gets this horrible disease, also now i am being checked for it, just waiting on results..


kind wishes,
sheila
:)
 
Hi sheilag, thanks for all the info.I will pass it on to my daughter.She prefers me to do this as she gets upset.It's great to know that your sister is well,after so much suffering.Congratulations to her on her coming wedding. I hope she keeps well and happy.Very good talking to you .Byee
 
hi guys
I hope you're all looking after yourselves out there.News about my 8 year old grandson Joe .He was put on Prednisolone 9 weeks ago,it was good for a few weeks,then everytime the prednisolone was reduced ,he started getting symptoms again,and having some side effects,too.
He saw the consultant ,who has now prescribed an anti inflamatoryand taking him off the prednisolone He has had more blood tests,as he seems anaemic again.Joe may have to go in for more tests.I wish you all Season's Greetings.
 
hi there helly

i was actually diagnosed at age 8 as well, just like youre grandson. i had symptoms for many years before that though.
the best advice i can offer is to know that it will make him strong in a way that only a chronic illness can. i can see how going thru childhood with crohns has shaped me as a person and when i step back to look at it, i really appreciate the outlook on life that it has given me :) i wish for your grandson that he will find the same small beauty in such a nasty and horrible situation.

i wish the best of luck to you and your family as you go through this with him. hope he starts feeling better soon!
 
Hi helly, my 7 year old son goes to the GI next week. He has always had tummy trouble. I worry most about accidents at school. He tries really hard to not let his constant diareaha get to him. I was just diagnosed last week. I am scared he has this to. Good luck with your grandson, these little guys seem so strong! prayers for you,
mrjmom
 
Hi mrjmom
I am so sorry to hear about both of you.Joe has been very patient with his problems ,but it is a worry about school time .Some days he just isn't up to going to school cos of tummy ache and no energy.My daughter has had to go to school with him some days but because of her job,other times i stay with him.These litttle guys do find will power from somewhere.Let it be a lesson to us all.Love and prayers. Helly
 
Hi Kello 82
Thanks for your mess
You seem to have lots of inner strenght.It's interesting cos Joe seems to have some too.I expect it will grow as he does.We have been waiting for this remission everyone talks about but no sign yet .If ever.Thanks for your kind words Love Helly
 
Helly,
I was just diagnosed in November, and my son that will be seven next month just went to the GI yesterday. She had his medical chart faxed from the ped and said that he stopped growing at an average pace around 9 months old. He has had so many problems for so long but through everything remains so resiliant. I am sorry to here about your grandson but just know you are not alone. John (my son) will have a colonoscopy, and endoscopy and a whole lot of bloodwork next month. What I try to do with John is let him be a normal little boy when he feels like it and let him rest when he needs to. He knows he is a little different than his brother and sister and also his friends but it has been this way ever since he can remember so he doesn't know any other way to be. God Bless your family,
mrjmom
 
Hi everyone just to say I'm back.My grandson Joe has not been too good in the last 3 months.The medication is not helping toomuch .He has gone back to the hospital and they are now trying an holistic diet . The idea is that he will eventually just take that and herbal pills.I am not convinced.He has been missing school,especially in the mornings,that's when he feels worse.
 
aw helly, so sorry to hear that things havent picked up for him yet :(

mornings were always the worst for me too, i went in late so many days in elementary and middle school. missing so much is really dissappointing, but also try to weigh the stress that a school day might bring to him. hes going through a lot right now, and stress less days are what he needs
 
Hi it's me again .Can anybody out there tell me what kind of food is best ? Joe has been on this very strict dietof organic food no wheat no sugar no fats except palm oil,really hardly anything.It is not workingHeis back to passing blood and having a lot of diorrhea.HELP
 
well, everyones different. youll see on all of the food threads that something that may be terrible for one patient is fine for another.

generally though, when im flaring i stick to things like mashed potatoes, pasta, mac and cheese etc.
however, these type of foods sound prohibited by the diet hes on. i was on the Specific Carb Diet for a while. it seems similar to what you describe-no wheat, sugar. mostly veggies and meats which tend to make more work for the intestines. i ended up losing too much weight though due to the flare and opted for eating anything that appealed to my appetite.
SO this is probably not very helpful advice, im sorry! diet is personal, its so different from person to person so its hard to advise on.

my main suggest is gentle foods. no raw veggies and stuff. and lots of fluids for the diharrea!
good luck helly. you guys are in my thoughts.
 
Hey.
I was diagnosed at the age of six. Am 20 now! It's not the end of the world, but it is a challenge. Hope your grandson's doing well.
 
hi im emma my daughter was diagnosed at 10 shes now 13 she takes azathiopren and has used remicide or infliximab has had peri anal abcsesses for 2 1/2 years the infusions sorted that on the short term just recently she was admitted to hospital again and we saw there was a breakdown in the skin again so shes back on the antibiotics longer term if that doesnt work its back on the infusions again shes used the steroids they are ok for a quick fix but honestly watch them they aint good on the long term and shes done the modulen and the doc said out of 15 or so kids he had on it she was 1 of 2 success stories so hold on in there she was allowed haribo sweets just a couple mind after the modulen we used milkshake flavourings she preferred those
do you not think the liquid diet is like having a baby again making up feeds then eventually weaning again a couple of things a week reintroduced back into the diet
give joe our love emma and leighanne xx
 
hi ,back with news from Joe.He has been at home a lot ,as he keeps having a lot of pain and having to go to the toillet continuously. So he has missed most mornings at school and some afternoons .They are going to organise some tuition at home.He went to the hospital yesterday and the consultant says he will try prednisolone again together with some others which he will decide upon ,when he sees the blood results next week,also it looks as if Joe will be coming off the organic food diet which is not helping.
 

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