Mom to 7-year-old with Crohn's

[hann's mummy]

My son is diagnosed with Crohn's just before he turned 7 and we just celebrated his birthday with Modulen.

am very upset about the situation and just feel very ridiculed with I read this

"Crohn’s disease is a rare condition. ...

Most cases of Crohn’s disease first develop in people who are between 16 and 30 years of age. ... It affects slightly more women than men.

Crohn’s disease is more common in white people than in black or Asian people. It is most prevalent among Jewish people of European descent."

~ taken from nhs.uk

My son is 7, male and Asian. He's so outside the "common" group.

I read here that what I should do now is read read read but everytime I read up on Crohn's, I cry.
It seems my son's condition is considered "mild" compared to many here or is this just the beginning...

 

[crohnsinct]

HAPPY BIRTHDAY HANN! :bdayparty:

For some of us reading helps makes us feel like we have some control. Holla control freaks! Sometimes it will just confuse or sadden you. Know your limits. Read as much as you can then turn it off. Some people find it easier to just go with what the docs are telling them and pop on to ask questions etc. You are dealing with a lot right now, don't borrow trouble and worry by reading all the scary stuff. There are many, many people who find a drug that works for them and who are managing their disease and living full happy lives. Read the success stories.

I have read those statements. I don't buy them and don't put too much emphasis on them. If I did I would be too fearful of the rare side effects and risks that so many of these drugs carry.

Sadly, no way of telling if the disease will stay mild or progress. it is awesome you got on it while it was mild. Quick action in knocking down inflammation now will save you a lot of trouble down the road. Give yourself a pat on the back! We had great success with Enteral Nutrition. I hope it works for your boy.

 

[hann's mummy]

thanx for you rreply, crohnsinct.

 

[Mehita]

Welcome to the Forum, hann's mummy. Sorry you had to find us, but this is a great place to ask questions and find support.

My son isn't "common" either. He was diagnosed at age 8, is male and Hispanic. His dx completely shocked me and it took a long time to come to terms with it. For me, my method of coping was educating and overwhelming myself with information. For support, I come here. Lots of wonderful people here with helpful advice and who really do understand because we're all living with or caring for someone with IBD.

We'll get you through this!

 

[Johnnysmom]

Sorry to hear about your son's diagnosis Hann's mum. It is such a hard time when they are first diagnosed. I think I cried for 2 weeks straight and then on and off for the next month. It really does get so much better as time goes on. You just have to give yourself some time. You will find that people on the forum tend to post when things are difficult and many have very complicated cases and that is why they seek support. So, I don't think it necessarily represents what most people experience with crohn's. ((((Hugs))))

Happy Birthday to your sweet boy!!

 

[ChampsMom]

Hey Hunn's Mummy...

Just wanted to echo what is being said here... I am truly sorry for you wee fella... I remember when my son was first diagnosed (he was 13), I asked the GI (at the children's hospital) if he wasn't quite young to be diagnosed with Crohn's? And her answer was, "Not around here... We've had them as young as 6 months and as old at 18..." I have found that her statement is indicative of the disease - there really isn't any consistency, outside of the fact all of us Moms here loathe the disease and how it affects our kids and other people...

I pray you and your family are working with a knowledgeable pediatric GI who can help you through the process... Though you have been your son's advocate since before the day he was born, the need for you to know more than the average Mum has jumped leaps and bounds! My son's CD is also on the mild side - there's LOTS of good stuff out there... just keep asking questions and providing information so folks can help you!

Praying for you!!

 

[my little penguin]

Hugs
Sorry you had to find us.
My son was dx at age 7 as well. Lots of crying too.
I tend to read and read some more.
It takes time but we are here to share stories and answer questions when you need it.

 

[Brian'sMom]

So sorry your son has crohns. But this is a great forum for parents. Its great to be able to ask a question in between doctor visits. I've had my worries eased many times by just asking parents here. And I've learned a lot!!!

 

[CarolinAlaska]

Sorry about your son, Hann's Mummy. It's super scary at first and I think we all went through stages of denial looking for reasons that the diagnosis is wrong. There really is no telling what course your son will have to experience, but don't stir up trouble or fears when they don't belong to you. We can support one another because we have had to take our own journey, which is different from others, but the same in that many of the treatments and tests are the same... What is your son doing for treatment and how old is he now? My daughter just turned 14 yesterday.

 

[Farmwife]

Hi and welcome.

My little lady is four.
Her GI has called her condition "weird". So I guess shes not common either.
No two are alike. I wish it were different. We ALL wish it were different.
I hope you find much support here. Take one day at a time. Remember once he finds a treatment that works, you both will feel better.

HUGS

 

[Sascot]

Hi and welcome to the forum. Sorry to hear about your son! My son was diagnosed at 12 and "enjoyed" 8 weeks of the Modulen. I also cried when we found out - Crohn's wasn't even something the pediatrician was expecting, so it was never even a possibility in my mind. I suppose I have "come to terms with it", although some of the sadness never really goes away. I wish for him a life where he doesn't have to have weekly blood tests and hospital stays.
One of the things I believe is "good" about getting an early diagnosis is that this just becomes their reality. They don't really know what a so called "normal" life is. My son just takes everything in his stride - he gets frustrated about little things but overall, it is just his normal life now.
I hope the treatment works really well - the Modulen worked wonders for my son!

 

[Willowcat05]

Hi welcome to the forum. My son done 8wks of Modulen when he was first diagnoised last year and done great on it gaining one stone in weight. He has recently had his first flare and had to be put back on modulen currently on week 6 of 8 doing great again. Modulen is magic milk as he calls it hope your boy has the same success as my son is having on it.


Happy Birthday

 

[CDJ]

Hi, Welcome to the forum. It is good that you have been able to find us as the forums are invaluable for help and advice.
I think until our children were diagnosed none of us had really heard of IBD, but we soon find out. It is very scary when you first have a diagnoses, but you do soon learn and you also learn to live with it.

My son was 8 when diagnosed with crohns disease [ now 12 ] though he had symptoms for around 18 months before that. I think I was just pleased to finally get a diagnoses than to worry about what he actually had, as he had been ill for a long time. Josh is white, and not Jewish, so falls outside the catagory of the common group also.
He has been on modulen twice, the first time it worked really well, the second time it didn't. He also was on it on his birthday, and Christmas. When he came off it this last time we had another birthday for him so that he could have some cake and enjoy food.

I hope that Hann enjoyed his birthday despite not being able to eat. :ghug:

 

[Niks]

Hi Hann's Mummy. Welcome to the forum. You will find some really supportive, caring people on here and some amazing advice.

I agree that knowledge is power, and you can guarantee that what ever you (and Hann) go through, someone will have had a similar experience.

(((hugs))) to you both xxx

:ghug: (really hope Hann had a fabulous birthday)

 

[DustyKat]

Hi hann's mummy and :welcome:

You have been given wonderful advice so I just want to add my support to what has been said. :ghug:

It surely is such an overwhelming and heartbreaking time for you and crying is such a normal thing to do and you certainly aren't alone with that one!

I know it is difficult to read about all the different aspects of Crohn's and not feel totally demoralised, to be left wondering if your dear child will ever be one those happy people in the glossy Crohn's brochure that looks like they don't have a care in the world.
BUT as hard as it seems just now the most important thing is knowledge because knowledge is power and with that power comes ability the be the best advocate for your child that you can possibly be and that can only be a good thing.

Another thing that is difficult first up is perspective. You come to a forum like this and it appears that every child or adult with Crohn's has a difficult and arduous journey. Yes, some people do have disease that difficult to control, others drift in and out of that phase, for others their disease is controlled with few problems and lastly there will be those for which Crohn's gives them very few problems their entire lives.
With this in mind you can see who is most likely come to a forum like this, those that are scared and in need of support and information and that is as it should be. As members overcome the difficult times and welcome in their new found health they drift away and enjoy life. Hence, what Crohn's is can become quite skewed. As cic has said, have a read through the success stories, they are only the stories here and there are loads and loads and loads of others out there that we never get to see.

:hang: Mum, the days are dark now but they will get better and that light at the end of the tunnel will get bigger and brighter!

Dusty. :Karl:

 

[CrohnsKidMom]

Hi Hann's Mom, and welcome! I'm sorry to hear of your son's dx. My son is 8 and was just dx'd in March. Our GI nurse told us the disease is most common in young adults, but she has seen 1 and 2 yr olds in their clinic. It seems to be coming more and more common with younger kids. We've had lots of tears too, but most of them happened while investigations were going on and we still weren't sure what was wrong. We feel better knowing what we are dealing with. My thoughts and prayers are with you. Take it day by day.

 

[Pentasa]

What type of foods has your son been eating for the past 7 years? I'm curious what could cause the onset so early.