Toddler diagnosed with IBD.

SmallWorldMum · 2024-07-24T13:59:26+00:00

My 2yr old dd has been diagnosed with very early onset IBD yesterday. Are there any other parents with IBD kids out there? Is there any hope or advice you could offer me? I'm really struggling to make her tablets palatable.

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elliesmummy19 · 24/07/2024 15:05

Do you mind me asking what her symptoms were/are?

I have Crohn’s, only diagnosed last year myself. In the last couple of months my daughter has been having episodes of diarrhoea and stomach cramps and I’m getting a bit concerned that she might have inherited it from me. She’s had another episode of diarrhoea tomorrow and I plan to take her to the GP but I feel like my idea of what is normal is skewed because my bowel habits/health is far from normal.

Sorry, I don’t have any advice though. Which medication is she on? Poor thing. I hope her medication works well for her and she feels better soon. IBD isn’t fun, you both have my sympathy.

Original poster

SmallWorldMum · 24/07/2024 15:16

@elliesmummy19 Thank you so much for the support. Her symptoms have mainly been diarrhoea and bloody stools. She hasn't been in obvious pain but also she can't express or describe other symptoms like an older child could.
They initially did a stool sample test and blood test and because her fecal calprotectin levels were so high they referred her to a paediatric gastroenterologist.

She's on a short course of prednisone steroids, omeprazole and pentasa.
I hope all goes well for your daughter and she is OK.

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elliesmummy19 · 24/07/2024 15:20

SmallWorldMum · 24/07/2024 15:16

@elliesmummy19 Thank you so much for the support. Her symptoms have mainly been diarrhoea and bloody stools. She hasn't been in obvious pain but also she can't express or describe other symptoms like an older child could.
They initially did a stool sample test and blood test and because her fecal calprotectin levels were so high they referred her to a paediatric gastroenterologist.

She's on a short course of prednisone steroids, omeprazole and pentasa.
I hope all goes well for your daughter and she is OK.

Thank you! I’ll take her to the GP to see if they’ll check her Calprotectin levels.

I hope all goes well for your daughter too and her symptoms are easing! I’ve generally had a good experience with steroids so hopefully the combination of meds will work well for your daughter! Obviously I’ve only had experience of my meds as an adult but do they come in liquid form for your daughter? If that would be easier for her to take?

Original poster

SmallWorldMum · 24/07/2024 15:24

elliesmummy19 · 24/07/2024 15:20

Thank you! I’ll take her to the GP to see if they’ll check her Calprotectin levels.

I hope all goes well for your daughter too and her symptoms are easing! I’ve generally had a good experience with steroids so hopefully the combination of meds will work well for your daughter! Obviously I’ve only had experience of my meds as an adult but do they come in liquid form for your daughter? If that would be easier for her to take?

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I'm not sure if they do come in liquid form but it certainly would be better. I've left a message for her IBD team so hopefully they'll get back to me soon. It's reassuring to know your medication is working so well, fingers crossed all goes well for us.

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Superscientist · 25/07/2024 12:56

I don't have experience of ibd but my daughter is on omperazole. If her dose is a full tablet you can snap it in two add a 1ml or 2 of hot water to release the beads and then mix it into fruit purees.

Remmy123 · 27/07/2024 15:02

Sorry to hear this - please join UK parents of Kids with IBD on Facebook - lots of parents on there (.I am too)

Original poster

SmallWorldMum · 28/07/2024 19:10

Remmy123 · 27/07/2024 15:02

Sorry to hear this - please join UK parents of Kids with IBD on Facebook - lots of parents on there (.I am too)

Thank you so much I have joined.

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ThereIsAlwaysWine · 28/07/2024 19:14

I was going to suggest the Facebook group too, my son was diagnosed aged 7, it's a tough journey but finding the right support is key, also try CICRA if you haven't already xx www.cicra.org/

Original poster

SmallWorldMum · 28/07/2024 23:04

ThereIsAlwaysWine · 28/07/2024 19:14

I was going to suggest the Facebook group too, my son was diagnosed aged 7, it's a tough journey but finding the right support is key, also try CICRA if you haven't already xx www.cicra.org/

Thank you, the hospital included a booklet from them so I will definitely contact them. There has been so much to take in but I'm so grateful for the support.

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Lbet · 30/07/2024 08:28

Hi there,
my 18 year old daughter was diagnosed with Crohn’s disease 6 years ago age 12, she had just started secondary school so timing was awful.
However she was put straight onto steroids and then biologics injection fortnightly which we did at home.
She went into remission after just a few months and has been for the last 6 years. Obviously this isn’t a cure and will live with it for the rest of her life. I have to say she has had the most incredible 6 years. She didn’t miss a single day of school throughout the whole of her time there including sixth form which she has just finished. The only time she had off was for hospital appointments and that was only once every 3 months. She went on every school residential going including a ski trip to Sweden.
she did a sky dive last year to raise money for ccuk. As I said just completed her A levels and predicted to do very well and she will go onto uni.

A very scarey time for you as your child is so young and you may well not know much about the disease.
just don’t scare your self by reading Dr Google. Every individual is different and the worst case scenario you read about may well not be your child.
Treatment for IBD has come on loads even in the last six years since my daughter was diagnosed.
My daughter is so well we even forget she has the condition.

Happy to chat anytime if you would like some support.

Superscientist · 30/07/2024 16:48

I don't know if they are an adult only service but I have heard good things about the Wren project through work. It's a peer support organisation offering counselling and support for those with ibd and UC to helping you navigate diagnosis and managing the condition that sort of thing.

Original poster

SmallWorldMum · 31/07/2024 13:18

Lbet · 30/07/2024 08:28

Hi there,
my 18 year old daughter was diagnosed with Crohn’s disease 6 years ago age 12, she had just started secondary school so timing was awful.
However she was put straight onto steroids and then biologics injection fortnightly which we did at home.
She went into remission after just a few months and has been for the last 6 years. Obviously this isn’t a cure and will live with it for the rest of her life. I have to say she has had the most incredible 6 years. She didn’t miss a single day of school throughout the whole of her time there including sixth form which she has just finished. The only time she had off was for hospital appointments and that was only once every 3 months. She went on every school residential going including a ski trip to Sweden.
she did a sky dive last year to raise money for ccuk. As I said just completed her A levels and predicted to do very well and she will go onto uni.

A very scarey time for you as your child is so young and you may well not know much about the disease.
just don’t scare your self by reading Dr Google. Every individual is different and the worst case scenario you read about may well not be your child.
Treatment for IBD has come on loads even in the last six years since my daughter was diagnosed.
My daughter is so well we even forget she has the condition.

Happy to chat anytime if you would like some support.

This is so wonderful to hear and I am so happy for you and your daughter. It's lovely to hear a positive story for a change, that fills me with hope. Thank you for sharing it with me. The good news is my daughter is now taking in medicine as she now has the dispersible tablets. Also her bowels have pretty much returned to normal in less than a few days which is absolutely incredible. I'm hoping it's going to be a good sign, fingers crossed!

OP posts:

Original poster

SmallWorldMum · 31/07/2024 13:20

Superscientist · 30/07/2024 16:48

I don't know if they are an adult only service but I have heard good things about the Wren project through work. It's a peer support organisation offering counselling and support for those with ibd and UC to helping you navigate diagnosis and managing the condition that sort of thing.

Thank you so much for sharing that with me. I had not heard about the Wren project. It's so wonderful that there are so many people out there willing to offer so much help. I'm really grateful.

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Lbet · 15/05/2025 12:32

Hi poster how is your little one doing?