3.5 year old son recently diagnosed with Crohn's

[gingbear]

Just wanted to say hello. My nearly 4 year old got diagnosed with Crohn's last month. The diagnosis was a huge shock to me as all the doctors I've been to with him always said he was unlikely to have anything serious, including the consultant who then diagnosed him with Crohn's. We have no risk factors in the family, myself and my husband are from 2 different parts of the world, we don't have any autoimmune diseases, I had a normal delivery and breastfed my son until he was 2.5. I feel I had done everything for him to be well and this happened anyway. I'm very worried about him, about his future, how his life will be, the side effects of the medication etc etc. At the moment he's doing well. He's on sulfasalazine. He's been complaining of leg pain lately and I'm wondering if this could be related to his medication (he's never complained of that before he started the meds). Anyone with a similar experience?
Since his diagnosis, every time he complains of some pain, I imagine the worst case scenario.
This diagnosis has broken my heart. He's so small still. He's picked up a few infections since he started his medication and every doctor that sees him is always shocked that he has IBD at this young age.
I have a health sciences background so I know how bad it can be even without googling anything, which I think makes dealing with this even worse...

 

[my little penguin]

Not sure where you are located but if in the US then try to get to a very early onset inflammatory bowel clinic .
They handle kids who were dx under the age of 8 with ibd or crohns

sulfanazine is not recommended as monotherapy for Crohn’s disease anymore
It only treats the top layer of inflammation in the intestine .
Crohns inflammation is found throughout all layers so that leaves things fester underneath

little kids are much harder to treat since the don’t tend to follow the rules of older kids and adults on what treatMent works

a lot have success with een (exclusive enteral nutrition-formula only no solid food )
This induces remission without steriods and mucosal healing
Much easier for little kids to do
With pediasure or kids boost etc….

methotrexate is used for kids as young as 2 with juvenile arthritis
This can also be used in Crohn’s disease
Humira has also been used in kids as young as 4 for juvenile arthritis as well for many years
But also works in Crohn’s disease

my kiddo was dx at age 7 but had Gi issues since birth -no family history
He is now 18
Like you I was scared in the beginning
But he is fine living life
Takes meds but that’s it other than bloodwork to monitor things

he started remicade at age 8 after failing Pentasa ,6-mp and methotrexate
He has been on humira plus methotrexate for over 5 years
And now Stelara plus mtx for the past 4 plus years

you can do this and we are here to support you

 

[polly13]

Hi just to second everything MLP says, know how your feeling my daughter now 13 was diagnosed just shy of her third birthday, so I know how you're feeling - finding this site for me was great. Hang on there

 

[gingbear]

Thank you for the replies @my little penguin and @polly13 . We're in Europe and there's no clinics specialising in VEO-IBD where we are. We're just with a regular pediatric gastroenterologist. My son's condition is classified as mild at the moment and, per what his doctor said, there's nothing else he can be given due to his age and they don't want to go down the biologics route yet since he's not too bad at the moment. I tried to link in with a local support group but I haven't heard much from them yet. For the first two weeks after his diagnosis I cried myself to sleep every night but now I'm sort of managing. I'm trying not to think too far ahead cos if I do, I get very stressed. I've been reading this forum and one thing that I was glad to read is that many children with IBD live active lives. This is one of the things I'm worried about- his quality of life. Thank you again for your replies.