10 year old daughter with Crohn's. Remicade not working

[ChildWithChrons]

My daughter was diagnosed with Crohn's 2 years ago (10 years at the time) has been in Remicade. She doesn't have typical Crohn's symptoms like bloating or diarrhea. However poor appetite, weight loss for prolonged period prompted us. Dr told us she is in moderate or severe Crohn's and suggested Remicade to start with directly.

After one year, her ESR (around 80) and CRP (2 TO 5) went up. We went from 8 weeks to 6 weeks to 4 weeks to doubling the dose. No improvement in blood results. She has no antibodies as antibody test came up negative.

However the doctor feel that remicade is not working and wanted to scope again and pursue different medication. Needless to say, I am very worried. Physically she feels fine, however the blood results shows otherwise. Not sure what to trust. Anyone has faced a similar problem with their kids.

 

[Brian'sMom]

Childwithcrohns,
I haven't seen this thread in a long time. I started it when we were racing thru medicines and headed towards remicade. Alot has happened since then... We are facing something similar to what you are experiencing right now. We were on Humira for awhile...it just seemed to fizzle out for us. We just finished Cimzia loading doses and it doesn't seem to be helping so far. We are headed to Mayo Clinic next week for an appt next Tues, the 29th. I'll let you know what they say. Our current GI said that sometimes kids don't have crohns that respond to the tnf drugs. I originally thought that Humira put our son in remission for a year and a half because his labs were normal for that length of time. But he also didn't grow much or gain hardly any weight, so the dr thinks maybe he wasn't being helped fully by the tnf biologics.

 

[ChildWithChrons]

Thanks Brian'sMom.

Right. Please let me know what you find. In my daughter case, the first year on remicade was great. Lab results were very good. It is slowly swinging to wrong side now. I thought if there is no antibody, the medicine must be working. It doesn't appear so. Doctor wants to do a scope and wanted to possibly switching to Humira. So much medicine pumping into a tiny body. My heart bleeds.

 

[Brian'sMom]

Our son didn't show any antibodies to Humira either.
He is finally gaining weight now only because of doing EN at night with an NG tube.

I hear ya on the "So much medicine pumping into a tiny body". Its just unreal how much we give them, and the doc's keep adding on.

 

[my little penguin]

WE were in a similar boat for Ds.
He reacted to remicade without any antibodies but kept needing higher doses and closer together before his two allergic reactions.
He is now on humira.

make sure to ask about adding lidocaine to the humira shot to reduce the ph and lessen the burn.

 

[Lewiss mum]

Hi brains mum my names e,am . My son Lewis isn't a typical crohns kid he gets tummy ache and abscess in his rectum that it no toilet visits apart from getting contemplated from time to time , he's on infliximab (remicade) and azathioprine I wasn't sure Lewis should be on these strong meds and were thinking of taking him of them as they arnt working they are supposed to stop his problems ie abscess, have you asked the doctor if they are all necessary I o the nfliximab in the u,k is sparingly used and there is sometimes a waiting list for kids who are suitable or are in desperate need as t costs so much to give , hope u find sme answers soon .xx

 

[DustyKat]

I have created a new thread hence Brian'sMom's reference to not seeing this thread for a long time.

Dusty.

 

[crohnsinct]

Hey there. I am not on a lot and this just caught my eye. My daughter has been on Remicade for almost two years now. At the beginning it wasn't working 100% because every time we tapered her prednisone symptoms returned. We went down to 5 weeks and 10mg/kg dosage and she also showed no antibodies. Our doc suggested adding Methotrexate to the mix to help the Remicade along. We decided to try an 8 week course of Exclusive Enteral Nutrition. EEN is used to bring down inflammation much the same way as steroids but has none of the side effects and has the added benefit of mucosal healing. The EEN worked and she was able to stay on Remicade alone for another 9 months. 9 months later some other EIM's were appearing and we ended up having to add the Mtx anyway but since Mtx is often added to the biologics when they aren't working alone it actually helped us extend out to 6 weeks.

I don't know if it is different when you are starting as opposed to losing affect but thought I would mention it. Good Luck!