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[Ladybug12]

Hello everyone. My daughter was diagnosed with Crohns in May of this year. She is 14 years old. My baby girl has shown so much strength through all the pain. There were moments when I would want to break down, but she was there trying to encourage me. Through the grace of God, there was someone at Children's Medical who understood that I was not leaving until I got answers. She has had her third infusion of Remicade. Her Crp levels in the ER was 2.98 and the current reading is <.29. I would like to find out if she is in remission. If her hemoglobin levels are increasing is it standard to add new medication in addition to Remicade if the patient shows signs of improvement? Vitamin D levels have improved as well.

 

[JenS]

I don't have the answer to your question but wanted to welcome you.

 

[Ladybug12]

I don't have the answer to your question but wanted to welcome you.

Thank you

 

[Eridon2002]

Welcome to the forum! Usually if another medication is added to Remicade it is methotrexate or Imuran. Both are immune suppressors. These reduce the chance of the body creating antibodies to Remicade which would reduce or eliminate its effectiveness. Doctors usually want the patients on Remicade for a little while before testing for remission(usually via colonoscopy). It's good to hear her numbers are going in the right direction. There is a tread for parents if kids with IBD. You might want to post there as well. There are a lot of knowledgable parents going through what you are and are a great resource.

 

[Ladybug12]

Welcome to the forum! Usually if another medication is added to Remicade it is methotrexate or Imuran. Both are immune suppressors. These reduce the chance of the body creating antibodies to Remicade which would reduce or eliminate its effectiveness. Doctors usually want the patients on Remicade for a little while before testing for remission(usually via colonoscopy). It's good to hear her numbers are going in the right direction. There is a tread for parents if kids with IBD. You might want to post there as well. There are a lot of knowledgable parents going through what you are and are a great resource.

Thanks for the info.

 

[my little penguin]

There is clinical remission
All labs and outside symptoms look good
And histological remission - biopsied and scopes look good in addition to labs/symptoms
Typically ds is scoped once a year every year and has an Mre as well to make sure the disease is under control

Ds only took remicade as a monotherapy and had an allergic reaction after 8 months .
He also never made it to 8 weeks
He was placed on 7.5 mg/kg and every 6 weeks
So don't be surprised if they have to tweet the dose or timing after the loading infusions
Must kids don't make it 8 weeks

Adding another med like 6-mp or Mtx is very common now to s kid allergic reactions like my son had .
Also lets them stay on the med longer
He has been on humira for 4.5 years and Mtx with it

Takes a while months to years before you know if your in remission
The fact her numbers are moving in the right direction is a very good thing though

Hugs

Tagging clash
Maya142
Tesscom
Pilgrim
Jmrogers

 

[Ladybug12]

There is clinical remission
All labs and outside symptoms look good
And histological remission - biopsied and scopes look good in addition to labs/symptoms
Typically ds is scoped once a year every


year and has an Mre as well to make sure the disease is under control

Ds only took remicade as a monotherapy and had an allergic reaction after 8 months .
He also never made it to 8 weeks
He was placed on 7.5 mg/kg and every 6 weeks
So don't be surprised if they have to tweet the dose or timing after the loading infusions
Must kids don't make it 8 weeks

Adding another med like 6-mp or Mtx is very common now to s kid allergic reactions like my son had .
Also lets them stay on the med longer
He has been on humira for 4.5 years and Mtx with it

Takes a while months to years before you know if your in remission
The fact her numbers are moving in the right direction is a very good thing though

Hugs

Tagging clash
Maya142
Tesscom
Pilgrim
Jmrogers

Thanks for replying. 6mp was given shortly after her hospital stay. She did not do well with this medication. Upset stomach, diarrhea, light headed, lymphocytes levels dropped really low. I truly want to believe in my heart that this will just go away. I'm scared. I'm trying to hold on to that voice that I heard telling me that everything was going to be alright as I sat crying while she slept. She is just so happy just to be able to do something a simple as stretching without pain. Thank you all for taking the time to respond as well as sharing your experiences.

 

[my little penguin]

It will get better but it takes time
Typically a year to get back to a new normal
Ds didn't do well with 6-mp either
Mtx injectable wasn't for for him
But oral Mtx has been ok
It's all hit or miss
But you will find the right combo
Crying in the shower helps
As well as venting in the parents section
Create some me time where you do "fluff" things
Reading a trashy book or watching tv
Shopping
Taking a walk
Gardening building etc
Anything that does not have to do with medicine

Remember oxygen mask on the parent first so you can care for the child

 

[Clash]

It's great that her number are moving in the right direction. It sounds as if she's in clinical remission, at least. Problem is with clinical remission there can still be simmering inflammation possibly doing permanent damage. Histological remission with full mucosal healing is the goal for most GIs especially those treating pediatric patients.

Meds like 6mp, methotrexate and Imuran can be added to give the remicade a boost and also in an effort to stave off the body from creating antibodies to remicade.

My son has been asymptomatic for a couple years while on meds. He has no outward symptoms and his inflammation markers are normal. His problem is that there is still inflammation present throughout his terminal ileum and colong. He's required surgery even though there were no outward symptoms.

Due to the fact that his inflammation has been chronic and refractory he has scopes more often. For the last two years it has been every 6 months. If he had no active disease it would be 1 x every 2 years.