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Hi there, so sorry to hear your little boy is suffereing. My little girl Lucy was diagnosed at 2 with Crohn's, she too started remicade at 3, however it didnt work after the first few infusions, so that was stopped and she was put on Humira and Methotrexate which put her into remission for 3.5...

My DD is on Methotrexate and her mouth is always sore from it, we manage with mouth wash and bonjella, however I understand that if it gets unmanageable docs can prescribe a steriod mouthwash.

Hi there, and sorry that you and your family are going through this awful time. My little girl Lucy has crohns also and her main symptoms sound a little like your little boys, she had extremely large and painful fistulas - she was diagnosed at two and started infliximab at 4 - ultimately it...

Just be careful Lucy did have a reaction while amoxicillin with methotrexate, he leg broke out in burn like blisters, it sounds worse than it was but she can't take it now. Any reaction just stop the antibiotic and call doct for an alternative

Hi everybody can't believe it's been almost two years since I've been on. To briefly recap my daughter Lucy was diagnosed with crohns at two and she was suffering from severe perianal disease. She didn't respond to 6 mp, infliximab, combination of both, and various other treatments and was...

Hope it works for him

Hi farmwife hope remicade works for grace. The infusion takes a while so bring books tablet etc to keep her occupied. Lucy was able to walk around during the infusion which was good. Bring a book for yourself too! Grace shouldn't have any problems with the needle she is used to getting a...

Hi everybody just wanted to give a quick update in where we're at the moment. Lucy is doing really well and has been symptom free for almost a year. She sucessfully completed her first year of school and turned 6 yesterday, is playing football, pony riding and swimming - basically doing all...

Thinking of you and your son today

I agree with the others I think you should get a second opinion. I am so sorry your little one is going through this.

Hi Liz I would agree that second opinion may be a good idea. Infliximab and 6mp didn't work for Lucy, my GI was really reluctant for her to have any kind of surgery so decided to try humira and methotrexate (she was 4 at the time) he did not expect it to work as nothing had and she continued to...

Def no to live vaccines - your dd may have some immunity if she had had her mmr already. Can you get her immunity checked? Would be nervous about sending her to school while there is an outbreak if she's not immune

Lucy was on remicade but it stopped working and switched to humira and on it for a year now with no scary side effects. The decision to start a biologic is very difficult as they are big scary drugs, having said that I don't know where Lucy would be without them, humira has been life changing.

Lucy has the methotrexate pill on Friday, folic acid on Saturday, humira shot every second Monday

I used to use an app - pillbox or something like that, also had a chart on fridge and used to tick off each med as she was given it

So glad it's working

Lucy has serious scalp issues with humira - derm thinks it maybe humira induced psoriasis but we have it pretty much under control with a cream and shampoo (started off daily) once a week now. Hair thining I have noticed in last few weeks GI thinks methotrexate am not overtly concerned as she...

Hi and welcome, my little girl Lucy was diagnosed with crohns at 21/2 and had symptoms from nine months. Sometimes the journey to diagnosis is long and protracted. Lucy's symptoms were different but she too always had a sore bum that looked like diaper rash. For me I knew there was something...

Lucy started with flagyll and cipro, prednisone next, prednisone + 6mp next, 6 mp with cipro, flagyll and augmenton at various intervals, remicade + 6mp and now humira+methotrexate is finally working

I'm so sorry to see your update , crohns is just horrible, big hugs to you and v. Hope the humira helps