We were going so well But........

[james's mum]

We thought everything was going so well with James, he is still on the Imuran and started on the Remicade, he had them at 1, 4, and 6 weeks all his symptoms cleared, face swelling went down, no more mouth ulcers, gaining heaps of weight and happier than he has been since finding he had Crohns late last year, though he has to have the setons in for at least another 6 months (that's ok he says I'm getting used to them), Due for next remicade treatment next week this is the longest it has been between treatments it will be 2 months but....... last week he started feeling a few ulcers in his mouth again, another small lump appeared on his bottom (started on Flagyl) but by last night his face is started to swell a little, more ulcers in the mouth and like large swollen bits in the sides of his cheeks. (not feeling the best). Spoke to GI and she said bring him in on Wednesday, may have to up the treatment time or possibly look at something else. Who knows, just when you think everything is going so well this little pest Crohns gets you again.

He even stood up in class last week and did a speech on what it was like to have Crohns (though he did want to leave a couple of details out). His dad and I very proud.

Anyway we will see what Wednesday holds.

James mum.

 

[james's mum]

Just an update, james has come home this afternoon with white spots all around his neck, not raised, not itchy, no fever has any one else had anything like this, just wondering

James mum.

 

[upsetmom]

I'm so sorry to hear about your son..:ghug:

I hope your GI comes up with a good plan.

No idea about the white spots, could it be a reaction to the flagyl.

 

[james's mum]

I don't think it is the flagyl as he has had it a number of times before. I have been doing some research and wondering if it may be skin pigmentation or something called Vitiligo (which from what I am reading can be connected with crohns) or some effects from the imuran and remicade.

Still looking all this up.

James mum.

 

[Tesscorm]

Sorry, have no advice but I do hope it's all something that can be cleared up quickly.

That's so great about his speech. I can imagine how proud you are! My son never did a anything like a speech that but he's always been quite open about his crohns - I think the fact that he was so open about it allowed his friends to easily move past the the questions of his illness to just accepting it and supporting him when necessary.

 

[Lewiss mum]

Hi james mum , we havnt chatted before but I no what your going through.how old is James , my Lewis is 6 he's been on infliximab (remicade ) since his 6 th birthday and azathioprine since november , lewis suffers with peri annals abscess , fistulas. His are always blind so they can't place septoms in , have th docs tried the combo of metronodozle And ciprofloxin this always seems to settle things down for Lewis . Lewis suffers with crohns in his lips , lower part of I side lip , colon and rectum the worst but we think it has moved to his small bowel now due to the urgency for the toilet and iron deficiency .
Its so awful when you think you can start to move forward then bam another flare starts
Im so proud he had the courage to stand up min class that's really brave of him , my lewis dosnt like to talk about it , he is seeing a special lady to help him deal with this but it's a slow progress,
Lewis has only hadb3 abscess this year so I no the infliximab is working a little
It's a slow process but hang in in there you will see benefits I would push for more infusions we have them every 6 weeks
He will stay on this for 2 years he,ll have a scope and MRI done in the next couple of months we have two fabulous nurses I don't no what I'd do with out , they always reassure me , do you have any nurses that help with James care ,x

 

[Gmama]

Hi James's mum! So sorry for everything you guys are going through. I am familiar with vitiligo which is an autoimmune disease and the pigment leaves the skin & you are left with a white patch. There is no rash or bumps with this. I do know a boy who is on Remicade and he does have spots that come to a white head then go away. This started on his neck then spread down his chest & up his face. The other kids just think its acne & it's not worth explaining. The doctor said that they have been seeing this with a few of their Remicade patients. He is going to head to a dermatologist to figure out the best way to treat it since its on his face.
We can sympathize with the fistula/abscess/seton situation. My son had a bad reaction to flagyl & cipro so we don't have that as an option
Hope your GI comes up with a good plan for a quick recovery!

 

[Sascot]

Sorry to hear he is suffering again. Good luck for the appointment

 

[crohnsinct]

Hi and sorry you are having problems. First re the appearance of Crohns symptoms, 8 weeks is the longest I have heard of anyone going between infusions. Some people just metabolize the drug faster and need a shorter interval or even more med. We had to experiment quite a bit with my daughter's dosing until we landed on every 5 weeks 10mg/kg. So it does sound like a shorter interval might fix the problem.

White spots: my younger one has Vitaligo but it typically doesn't come on all of a sudden and in lots of smaller dots. It typically starts as one or two patches and gets larger and larger. Remicade can cause all kinds of skin issues some not so serious but anything strange and sudden like that I would certainly want the doc to look at and access. Good thing you have an appointment tomorrow. Good Luck.

 

[Dexky]

What did you all decide? Up the dose time for remi or something new?