Son, newly diagnosed

[Floridatilly]

Hello. My 7 year old son has been poorly for 12 months. After finally getting a colonoscopy & endoscopy early December he was diagnosed with severe, active Crohn’s disease. I have since learned this means he is currently having a flare ?
he was on modulen feeds via a feeding tube for 8 weeks and now on Azathioprine and regular blood tests. His symptoms are still quite bad so they did different blood tests and stool tests last week which show very high levels of inflammation and his consultant said that the modulen feeds had not worked as well as he had hoped. My son is now on a 8 week steroid course as well as the Azathioprine. Also vitamin D and iron, as they were low. If the prednisone doesn’t work he will have a different medication via infusion but I can’t recall the medication. He will have a burium meal scan in 4 weeks.
he is so tired all the time, he looks grey, his tummy is so tender and his legs ache.
so I am just reaching out for any advice, support etc because its all extremely overwhelming.
Thank you

 

[GirlwiththeCurl]

Oh goodness, your poor son! I promise there will be lots of parents along soon with tons of good advice (my ibd daughter has sort of jogged along being mostly well, so I don't have all the experience of the others).

Hang in there!

 

[my little penguin]

Hugs to you
The beginning is hard
Ds was dx at 7 as well and now 17 so I know
Modulen is semi elemental formula which means the molecular chains are slightly broken down
So easier to digest
Polymeric formula (kids boost or Pediasure ) is not broken down at all so easier than food but not as easy as modulen

after that there is elemental formula (neocate jr or elecare ) these are broken down into amino acids and only a small amount of small intestine needs to be healthy to absorb the formula

the meal scan is to determine how fast your child stomach empties
Ds has gastroparesis which means his stomach is delayed on his long it takes to empty
We were told when the duodenum is inflamed this can happen . Ds duodenum healed a few years ago but his stomach still empties slightly slowly
Not a big deal he takes a med that makes his stomach empty faster

Sometimes when the inflammation is severe it needs a lot of help to heal
So using steriods and formula only might help

the infusion medicine is remicade
Remicade is a biologic which sounds scary when they tell you the POSSIBLE side effects
But watching your kiddo be so sick is way harder

remicade was the miracle drug for ds
They tried Pentasa first 5-asa did nothing
Then 6-mp (sister drug to aza) which never worked and elevated his liver enzymes
Then methotrexate by itself
nope -just made him very sick like the flu
Finally after a year of trying the less scary drugs
He got remicade
Suddenly I had my kid back
He swam on the swim team
Played hard etc...
He did get rashes and later reacted to remicade (8 months later ) but Ds has food , drug , animal ,pollen you name allergies so not a surprise
He stayed on humira after that no issues for years

He currently takes Stelara/methotrexate combo

Your kiddo will get to a happy spot
It may take a few meds /trial /error
But he will get there
Good luck

 

[pdx]

Hang in there! It is very hard at first, but it will get better when his treatments start to work. My daughter also had badly aching legs and fatigue when she was 7, along with slowing growth and high blood inflammatory markers. She didn't get a Crohn's diagnosis until she was 12, though, so at least you are getting started with treatment a little sooner, which is a good thing.

I'm sorry that the tube feeding didn't have a big effect but hopefully the steroids will make a difference for him now. I really hope that he starts feeling better soon!

 

[Floridatilly]

Thank you all so much for your replies. The steroids seem to be making him grumpy but fingers crossed they work and it will be worth it x x

 

[Maya142]

Unfortunately, that is common with steroids. Mood swings, crankiness, being hungrier than usual (which is typically good for an IBD kiddo, since many kids tend to be underweight) and a puffy face (called a "moon face"). Steroids have a lot of side effects but they do work fast typically. So hopefully he will be feeling better soon.

 

[Lizzyg]

Hi
So sorry you find yourself on this group but it is a very good group and full of experience with Crohns.

My 15 year old daughter was diagnosed with severe crohns Dec 17. She too had been poorly for 12 months prior to diagnosis. I was terrified as I didn't know anything about IBD. In fact I made myself quite ill with the worry. I made the big mistake of logging onto Dr Google and seemed to only find the worst case stories. I became so ill with over thinking the worst for my daughter. My daughters consultant did reassure me that my daughter would be fine and would lead a normal active life.
The first line of treatment was a course of steroids. We chose this as it was Christmas and thought it would be cruel for my daughter to have to do the liquid diet. Thankfully the steroids seemed to kick in almost straight away. Then my daughter started on Azathioprine. However three weeks after starting she had the most awful reaction. Stomach pains, vomiting etc. She was taken off Azathioprine and then started on Humira. That was three years ago and from that day my daughter has not had a single symptom with her crohns. Now I have come a very long way with my knowledge on crohns in the three years and I know there is no cure for crohns but I do know that crohns can be maintained for our children to lead a normal active life. I only wish I had taken this on board at the very beginning of our journey. Had I done that I would have been in a much better place.
I wanted to share my daughters story with you because on diagnosis and just after my daughter was very grey. Swollen stomach, very tired all the time and aching joints. She was had an iron infusion ASAP because her iron levels was so low. She was also put on vitamin D as that was also very low. Although the steroids seemed to kick in straight away by that I mean she got the most amazing appetite back. To see your child eating again after months of having no appetite is unbelievable. The other symptoms my daughter had didn't dissappear over night it was gradual.

We live in the UK and I know things run a little different but my Daugter is so well looked after. She has a colonoscopy and endoscopy every 12 months, bloods checked every 3 months, stool sample checked every 3 months. This will go on until she is 18, then she will go onto adult care. I am confident my daughter will be confident enough by then to take care of her own treatment with our support.

There are two positive outcomes that crohns has brought to our household and that is it has allowed my daughter to become a very confident and strong young lady. There is nothing that she can not do because of having crohns. The second positive outcome is that it has made me a stronger person and taught me not to always think the worst because the worst very rarely happens.

Your son will be on a very successful treatment but it will take time to kick in. In the meantime you should gradually start to see improvements has time goes on. Your boy is already getting some great treatment for his low iron etc. Soon you will start to see improvements with your boys tiredness and aching joints. In fact you will get your boy back again.

Wishing you all the very best. X

 

[Floridatilly]

Hi
So sorry you find yourself on this group but it is a very good group and full of experience with Crohns.

My 15 year old daughter was diagnosed with severe crohns Dec 17. She too had been poorly for 12 months prior to diagnosis. I was terrified as I didn't know anything about IBD. In fact I made myself quite ill with the worry. I made the big mistake of logging onto Dr Google and seemed to only find the worst case stories. I became so ill with over thinking the worst for my daughter. My daughters consultant did reassure me that my daughter would be fine and would lead a normal active life.
The first line of treatment was a course of steroids. We chose this as it was Christmas and thought it would be cruel for my daughter to have to do the liquid diet. Thankfully the steroids seemed to kick in almost straight away. Then my daughter started on Azathioprine. However three weeks after starting she had the most awful reaction. Stomach pains, vomiting etc. She was taken off Azathioprine and then started on Humira. That was three years ago and from that day my daughter has not had a single symptom with her crohns. Now I have come a very long way with my knowledge on crohns in the three years and I know there is no cure for crohns but I do know that crohns can be maintained for our children to lead a normal active life. I only wish I had taken this on board at the very beginning of our journey. Had I done that I would have been in a much better place.
I wanted to share my daughters story with you because on diagnosis and just after my daughter was very grey. Swollen stomach, very tired all the time and aching joints. She was had an iron infusion ASAP because her iron levels was so low. She was also put on vitamin D as that was also very low. Although the steroids seemed to kick in straight away by that I mean she got the most amazing appetite back. To see your child eating again after months of having no appetite is unbelievable. The other symptoms my daughter had didn't dissappear over night it was gradual.

We live in the UK and I know things run a little different but my Daugter is so well looked after. She has a colonoscopy and endoscopy every 12 months, bloods checked every 3 months, stool sample checked every 3 months. This will go on until she is 18, then she will go onto adult care. I am confident my daughter will be confident enough by then to take care of her own treatment with our support.

There are two positive outcomes that crohns has brought to our household and that is it has allowed my daughter to become a very confident and strong young lady. There is nothing that she can not do because of having crohns. The second positive outcome is that it has made me a stronger person and taught me not to always think the worst because the worst very rarely happens.

Your son will be on a very successful treatment but it will take time to kick in. In the meantime you should gradually start to see improvements has time goes on. Your boy is already getting some great treatment for his low iron etc. Soon you will start to see improvements with your boys tiredness and aching joints. In fact you will get your boy back again.

Wishing you all the very best. X

hi, we are also in the UK. He is under Alder Hey in Liverpool which is about an hours car ride away for us.
I must admit to also googling Crohn’s and terrified myself with my findings of Crohn’s causing bowel cancer etc.
its all very daunting and with covid most of his appointments have been cancelled so we have had very little contact or support. I understand it’s early days yet but we are anxious to get him well asap.
x x x

 

[Lizzyg]

hi, we are also in the UK. He is under Alder Hey in Liverpool which is about an hours car ride away for us.
I must admit to also googling Crohn’s and terrified myself with my findings of Crohn’s causing bowel cancer etc.
its all very daunting and with covid most of his appointments have been cancelled so we have had very little contact or support. I understand it’s early days yet but we are anxious to get him well asap.
x x x

Hi again,

Of course it's very daunting and all very new for you.

Good to hear you are from the UK too!
I run a support WhatsApp group along with another mum. It started with just the two of us just over a year ago. We now have over 30 members. Most of us are from the Midlands but not all. I am sure there are a couple of mum's from Liverpool. You are more than welcome to join if you want. I know you will get a lot of support and advice. In fact there are a couple of very young children like your son who are just starting on the infliximab journey.

No pressure to join but let me know if you would like to and I will send you an invite.

 

[Floridatilly]

Hi again,

Of course it's very daunting and all very new for you.

Good to hear you are from the UK too!
I run a support WhatsApp group along with another mum. It started with just the two of us just over a year ago. We now have over 30 members. Most of us are from the Midlands but not all. I am sure there are a couple of mum's from Liverpool. You are more than welcome to join if you want. I know you will get a lot of support and advice. In fact there are a couple of very young children like your son who are just starting on the infliximab journey.

No pressure to join but let me know if you would like to and I will send you an invite.

I would most definitely love to join. That sounds amazing. Thank you x

 

[Lizzyg]

Great I know you will be very welcomed to the group. I am just in the middle of colouing my grey roots. I will work out how to private message you when I'm done.

Keep a look out.