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Mummy1974 - yes the perianal area is so problematic and extremely difficult to treat making it almost torturous for the child - Lucy used to scream while she was going to the bathroom, it was soul destroying for her and me - the whole process used to take about 4 hours per day - 2 in the...

HI Mmmd01 sorry to hear about your son being ill and going through this diagnosis process. Sorry to hear about your poor young cousin also, must have been devasting for your family and is of course now adding to your worry. I would agree with the others, it does sound like it could be Crohn's...

Thanks Tony, but Lucy uses syringe as her does doesnt come pre loaded, so I think that is what is the delay as the new formula is not yet available in vials - checked with the pharmacist again yesterday, we are in Crumlin in the next couple of weeks so I am going to ask again there ...

Lucy had yellow and white scales on her scalp about 6 months after starting Humira - the paed dermatologist felt it could be psoriasis induced by the Humira and give us a scalp paste to use (cant think of the name but I will look it up and post later) but it smelt like coldtar, after about a...

Hi Mummy1974, my little girl Lucy was diagnosed with perianal disease at 2 - so in a very similar age group to your little man, my heart goes out to him. Lucy had a reaction to Flagyll also - she kept getting pins and needles in her arms and legs and it had to be discontinued, our GI tried...

Yes I am also promised that the new version Humira is coming and it is not as painful and lucy is looking forward to it. I think for us with Lucy it was easier because she was so young when she started it - she was only 4 so I think she accepted it quicker than the older kids do. She is 8 now...

Good to hear your update - glad she is doing ok.

Hi there, just to want to give support. My little girl was diagnosed with Crohns at 2 - so she was older than your baby, I do think however it reared its head when she was about 9 months. She was on steroids, 6mp and multiple antibiotics on and off for about a year and half after diagnosis -...

OMG Farmwife so sorry you are having to deal with this again!n - it must be so frustrating and upsetting for you. I have no advice as things work very differently over here and we dont have to apply for drugs to be covered once they have been approved for use by the medicines board. Will be...

We live in a different country so I'm not familiar with the 504 but when Lucy was starting school she was at her sickest so I fully understand the stress and worry. In conjunction with the school we secured a special needs assistant who was available to help her in the bathroom. She was...

Think they are they have a cow on the box 😀

I am so sorry to hear that your daughter is suffering again. Hopefully you will find something that works for her soon.

Hi there I know I have posted before about Lucy's skin issues, she always looks pretty awful as she get terrible rashes from the medications and up until now we have had to use fairly heavy duty steroid creams to keep them at bay and once we stopped using the creams back to square one. I...

Good news bloods for coeliac came back ok, so we wait for the MRE to see whats causing the flare. She has had loads of blood in her poos the last couple of days, so Im starting to get a little concerned, its all very strange, her calprotecton was only marginally raised, her CRP and ESR are...

Thank you Silec - my DH is picking up the blood results in relation to the coeliac so hopefully we will know more later on. hope things are ok with you and your boys. I will update when I get the bloods and get to talk to the GI.

Thanks our GI says exactly the same about the methotrexate, I will mention the injection and see what they think, I know initially they didn't want to put her through the trauma of two injections but she is older now and I think she could handle it ok

Hi there, hope your doing ok, this is a difficult decision for any parent, but I agree with everything MLP has said. My little girl Lucy is almost 8 and has been on biologics since she was 3 - we had no choice, she was first on remicade and then moved to Humira, I have four children and...

thanks for all the replies, she takes the methotrexate orally and he has slightly reduced the dose and we are playing with timing of the taking the folic acid and so far so good, she didnt vomit with it this weekend and didnt complain about feeling ill. I am giving her the zofran 3 hours before...

Hi Silec, hope you and the twins are doing ok, Im in Ireland also so I do know how difficult it can be to finally get an IBD diagnosis. My little girl who is almost 8 was diagnosed with Crohn's at 2 years and 10 months, by the IBD team in Crumlin. I cant determine from your post if you have...

Hi there everybody, some of you may remember Lucy's story, she was diagnosed with Crohn's disease when she was two and was quite ill for a number of years until she went into remission with Humira and Methotrexate. She has been on Humira now for just over three years and had been doing really...