Awaiting diagnosis - discussing results

[deepbluewave777]

Hi- New member here.
My son is 9 years old- he’s had (ALOT) of blood in his poo, jelly blood clots, a fissure- he has raised inflammation in his bloods & positive Calprotecin result in his stools. He’s had an urgent referral to Gastro ( UK) every bone in my body tells me he’ll be diagnosed with IBD- but the GP said there could also be a chance it’s a viral bug ( no Bacterial in his stools)
Is this really likely? Anyone have any experience of this being the outcome?
Thanks in advance for any help.
A heart broken mum

 

[Pilgrim]

It is possible, so you won't know for sure until the diagnosis comes in. That said, mom instincts are pretty good. I remember the long road to diagnosis with my then 3 year old. I had all the possibilities figured out but refused to even consider it could be Crohn's. It just sounded too awful. So, it seemed like a big blow to receive the news. 7 years later....it's part of life but she's living life at the same time. Her brother has also since then been diagnosed with Crohn's. He's working through it too. Best thing is to get your diagnosis and start working through the treatment options. Keep learning as you go. Try to be positive with your son. He's suffering now but things will get better. There are a lot of moms here with years of experience - we're all happy to help. I'm sorry the both of you have to go through this.

 

[deepbluewave777]

It is possible, so you won't know for sure until the diagnosis comes in. That said, mom instincts are pretty good. I remember the long road to diagnosis with my then 3 year old. I had all the possibilities figured out but refused to even consider it could be Crohn's. It just sounded too awful. So, it seemed like a big blow to receive the news. 7 years later....it's part of life but she's living life at the same time. Her brother has also since then been diagnosed with Crohn's. He's working through it too. Best thing is to get your diagnosis and start working through the treatment options. Keep learning as you go. Try to be positive with your son. He's suffering now but things will get better. There are a lot of moms here with years of experience - we're all happy to help. I'm sorry the both of you have to go through this.

 

[deepbluewave777]

Thanks so much for your reply.
Its so sad to see how many children are severely affected.
Do you know what the basic process is with Investigations?
I’m really struggling with what to feed him- what he should avoid ( as it’s many healthy things) and then his basic compliance. He just looks like skin & bone to me.

 

[my little penguin]

Investigation to dx in the US at least
Upper /lower endoscopy
Mri with entography (MRE ) imaging
And capsule endoscopy (pill cam -swallow little camera or placed during endoscopy )

Once he starts to heal he will gain weight
My kiddo was dx at age 7 now almost 18 (yikes)
And I would not consider crohns or UC before his scope
Even after his scope we were told it was food allergies
Biopsies came back consistent with crohns
MRE showed mild inflammation as well

treatment plus formula (peptamen jr -aka modulen in uk )
And he grew gained weight all good
It will be ok
Maybe not at first
But within 1-2 years it will be old hat

 

[Pilgrim]

The gold standard for diagnosis is upper and lower endoscopy with biopsies taken. In your situation, I would push for that. It also will give them a roadmap to current disease location and severity. It makes a difference when deciding on meds.

As for food, I would normally reccomend meal replacement shakes. However, because they work like medicine they may affect what is seen on scopes. I'm not sure, maybe other parents can chime in there.

If there's quite a bit of bleeding I would go low residue - easy to digest. Scrambled eggs, soft cooked fruits and veggies (applesauce, mashed potatoes). If his weight is dropping then see what he can tolerate that will add calories. Avocados, smoothies, soups with cream. You will have to see if anything sets him off. It's different for each kid. I'd say for sure no corn, nuts, seeds, raw veggies.

 

[deepbluewave777]

The gold standard for diagnosis is upper and lower endoscopy with biopsies taken. In your situation, I would push for that. It also will give them a roadmap to current disease location and severity. It makes a difference when deciding on meds.

As for food, I would normally reccomend meal replacement shakes. However, because they work like medicine they may affect what is seen on scopes. I'm not sure, maybe other parents can chime in there.

If there's quite a bit of bleeding I would go low residue - easy to digest. Scrambled eggs, soft cooked fruits and veggies (applesauce, mashed potatoes). If his weight is dropping then see what he can tolerate that will add calories. Avocados, smoothies, soups with cream. You will have to see if anything sets him off. It's different for each kid. I'd say for sure no corn, nuts, seeds, raw veggies.

Great thanks so much. What kind of cereals would you advise? I’ve taken him off weetabix & replaced with corn flakes, to be low in fibre, but I feel like I’m just guessing.

 

[deepbluewave777]

Great thanks so much. What kind of cereals would you advise? I’ve taken him off weetabix & replaced with corn flakes, to be low in fibre, but I feel like I’m just guessing.

What kind of fruits are ok in smoothies?

 

[my little penguin]

You need to wait for the scopes
Because getting a dx is hard
Changing diet can fix a myriad of things without knowing the problem /cause in Gi land
So while it seems cruel
Do not change anything in his diet unless his Gi tells you to
Especially if they are doing scopes /imaging
Please wait

then your GI can give you diet restrictions
If dx with crohns most are placed on formula only (no solid foods ) for 6-8 weeks known as exclusive enteral nutrition (een) which is as effective as steriods in kids
But difficult for some kids to complete

 

[my little penguin]

Leave wheat in his diet since celiac can cause lots of Gi issues as well
They can’t tell if you stop eating wheat
Has to have wheat daily for at least 4-6 weeks prior to a scope to show anything
As stated before do not change anything
Otherwise you won’t know what was fixed abd how to keep it that way long term

 

[Pilgrim]

@deepbluewave777 My daughter seemed to be ok with rice crispies but I do agree with MLP above that you do want to be careful not to remove wheat until after diagnosis.

We would use bananas, yogurt, and peaches or a small amount of strawberries for smoothies. Maybe a little honey. Strawberries have tiny seeds so we didn't use many just in case.

Hopefully you can get scopes arranged before too long.

 

[Lizzyg]

Hi. How are things with your son now?, Has he had his first appointment with the gastro team? I m from the UK, I have 15 year old daughter who was diagnosed with Crohns 3 years ago. I can run you through the whole process of getting my daughter diagnosed and treatment leading to remission.

 

[deepbluewave777]

Hey- thabk you,
No we havnt heard anything yet. I had to take him to A&E- they ran more bloods & his CRP had raised again. He was really poorly but seems better this week???
yes that would ge great!

 

[Lizzyg]

Hi deepbluewave I think I have sent you a private message if I have done it correctly. Let me know.