My 11 year old Savanah diagnosed 4-2014. Tried azathioprine made her severely nauseous. Tried Methotrexate same response. Prednisone was a wonder drug stopping Crohns symptoms. Had Dexa Scan and found out she is close to Osteoporosis so off Prednisone. Started Remicade infusions has had 3 infusions to date. Response has been lower immune system and catching every sickness that goes around at school but has helped the Crohn's disease. Thinking of home schooling. So trade Crohn's disease for lower immunity and now she can't even go to school? Not a fair trade it seems. Need support on your journey's? Feeling discouraged.
Frustrated!!!!
- Thread starter hollym
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So sorry that your daughter is going through this. My son has been on Remicade for a little over 2 years now. He has been healthier since going to Middle School. I am always telling him to not touch his face, wash his hands and drink lots of water! Make sure she is taking a good multi-vitamin and getting lots of sleep.
I see you are in Utah - do you to Primary Children's for your infusions? We were just there last week.
I see you are in Utah - do you to Primary Children's for your infusions? We were just there last week.
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Typically biologics do not increase the likelyhood of catching a cold cough etc...
Biologics only make you more suspectible to oportunistic infections ( ie complications from the flu , pneumonia etc..) but not the actual infections.
There maybe something else going on honestly.
DS has been on biologics since third grade - now in fifth grade
No more colds than normal - he is even on Mtx plus humira at this point .
He was on remicade.
Hope the colds improve soon.
Has she had blood work at her infusion ?
Did the check her wbc etc....?
Biologics only make you more suspectible to oportunistic infections ( ie complications from the flu , pneumonia etc..) but not the actual infections.
There maybe something else going on honestly.
DS has been on biologics since third grade - now in fifth grade
No more colds than normal - he is even on Mtx plus humira at this point .
He was on remicade.
Hope the colds improve soon.
Has she had blood work at her infusion ?
Did the check her wbc etc....?
I'm sorry to hear your daughter is sick so often! We're battling some sort of virus right now as well. I have no experience with Remicade, but my daughter has a Primary Immune Deficiency so a weakened immune system is something we deal with daily. We try to be extra careful with hand washing, disinfecting surfaces, keeping personal space, etc. What does your doctor say about her immune issues and recent sickness?
DustyKat
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Hugs to you and Savanah, mum. :ghug:
I agree with what has been said above re biologics. Although we have not done the biologic class of drug we are doing immunosuppressives in the form of Imuran. My kids stay remarkably well on the whole.
As mlp has said, perhaps look to something deeper that may be going on and also give the Remicade a little longer to kick in, it already is which is fab, and at the same give your daughter more time for her immune system to reach the status quo. I know, waiting and watching is the pits! :yfrown:
Also bear in mind that whilst Prednisone is a fab drug for what it is designed as you know the downside is the bloody side effects. Unless an infection is opportunistic and a more severe than the usual bugs going around then Prednisone can mask symptoms of infection without you knowing about it and if you have the whizzy feeling that goes with it then many folk just power on through them. All well good at the time but as you can imagine this can take its toll in the long run and it may take a little while for things to settle back to normal now that the Pred is out of her system.
:hang: mum, things will turn around for your lass, bless her. :heart:
Dusty. xxx
I agree with what has been said above re biologics. Although we have not done the biologic class of drug we are doing immunosuppressives in the form of Imuran. My kids stay remarkably well on the whole.
As mlp has said, perhaps look to something deeper that may be going on and also give the Remicade a little longer to kick in, it already is which is fab, and at the same give your daughter more time for her immune system to reach the status quo. I know, waiting and watching is the pits! :yfrown:
Also bear in mind that whilst Prednisone is a fab drug for what it is designed as you know the downside is the bloody side effects. Unless an infection is opportunistic and a more severe than the usual bugs going around then Prednisone can mask symptoms of infection without you knowing about it and if you have the whizzy feeling that goes with it then many folk just power on through them. All well good at the time but as you can imagine this can take its toll in the long run and it may take a little while for things to settle back to normal now that the Pred is out of her system.
:hang: mum, things will turn around for your lass, bless her. :heart:
Dusty. xxx
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Holly,
We also homeschool because school became overwhelming for our daughter. If you want any advice if you decide to take that route please PM me.
As the others have said though please have your doctor do some further investigation and check on her immune system. Sometimes crohns can be a secondary disorder to certain immune issues such as primary immune deficiency. for some reason not every doctor seems to be aware of this so you may have to push a little for further testing.
We also homeschool because school became overwhelming for our daughter. If you want any advice if you decide to take that route please PM me.
As the others have said though please have your doctor do some further investigation and check on her immune system. Sometimes crohns can be a secondary disorder to certain immune issues such as primary immune deficiency. for some reason not every doctor seems to be aware of this so you may have to push a little for further testing.
