I need help..after 4 years of my stepson being diagnosed with Crohn's he looses so much weight and nothing seems to help.he has been on medical treatment and i refuse to keep giving hims steroids.his mom finally agreed to it that we can take care of him for 2 month to see if we can get this under control. She really did not care much and now i got a 45 pound 11 year old to weak to do anything and tired all day to take care off.i really need some help to put weight on him. I want him to enjoy eating again without him having stomach pain or running to the bathroom. Doctors are involved any ideas how i can help my stepson to enjoy life again?
My stepson 11 has Crohn's loosing weight
- Thread starter nadsan
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Is your stepson on any other treatment besides steroids? Quitting steroids cold turkey can have major affects and should NEVER be done. Your body needs time to get your adrenal glands working again. http://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923
I'm sorry to hear your kid has been suffering. You should explore options like biologic or immunosuppressive therapies. Steroid use is not meant as a maintenance treatment, it is to be the bridge until other meds kick in.
I'm sorry to hear your kid has been suffering. You should explore options like biologic or immunosuppressive therapies. Steroid use is not meant as a maintenance treatment, it is to be the bridge until other meds kick in.
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Oh, poor kiddo. I hate to hear about children suffering with this disease. Can you give us a recap of what meds he's been on, what type of doctors he's seen and what they've said? I'm surprised they've let him get that low!
It sounds like his disease is not under control at all. Most kids here are on 6MP (also known as Imuran or Azathioprine) or Methotrexate or a biologic (Remicade or Humira). At least one or a combo of these are used as maintenance medications. I think this is your first step... have a serious conversation with his gastroenterologist and/or possibly seek a second opinion.
As for weight, some kids drink supplemental nutrition drinks like Ensure, Boost, Peptamen, etc. Some also drink these exclusively, called EEN or EN. This, too, is something to talk to his GI about.
It sounds like his disease is not under control at all. Most kids here are on 6MP (also known as Imuran or Azathioprine) or Methotrexate or a biologic (Remicade or Humira). At least one or a combo of these are used as maintenance medications. I think this is your first step... have a serious conversation with his gastroenterologist and/or possibly seek a second opinion.
As for weight, some kids drink supplemental nutrition drinks like Ensure, Boost, Peptamen, etc. Some also drink these exclusively, called EEN or EN. This, too, is something to talk to his GI about.
Your poor boy! Yes, his Crohns needs to get under control. Steroids are an initial treatment and cannot be used for the long term. He would have to taper off them very slowly however, and ideally should be on a maintenance med (as already mentioned) that can take over where the steroids leave off. I hope the doctors get the disease under control and your boy gets on the road to better health soon!
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Second the EEN
With the right treatment ( meds combos ) your kiddo can enjoy life again.
DS is 11 as well . Dx at age 7.
He was 50 lbs at dx and 4'2"
Now he is 90 lbs and 4'11"
He currently takes humira /Mtx plus drinks plus 2-3 peptamen jr for maintence
We have used steriods as needed but only until the maintence med could take over
Good luck
With the right treatment ( meds combos ) your kiddo can enjoy life again.
DS is 11 as well . Dx at age 7.
He was 50 lbs at dx and 4'2"
Now he is 90 lbs and 4'11"
He currently takes humira /Mtx plus drinks plus 2-3 peptamen jr for maintence
We have used steriods as needed but only until the maintence med could take over
Good luck
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I wouldn't say his mom doesn't care, she may be in a situation of not knowing how to get his flare under control. Sometimes flares are stubborn and can be very difficult to gain control of.
First, dont quit steriods cold turkey. That can do a lot more harm, it can make his flare worse, cause mental issues, ect.
what meds is he on aside from steriods? Does he take his meds daily? What are the symptoms he's expiriencing aside from fatigue and issues? what is his diet like?
depending on the Dr they may want to do a bottom up or a top down approach. Bottom up starts with a basic maintance med like lialda if that doesn't work then a more powerful drug is added (an immune suppressant) like mercaptipourine if that doesn't seem to work then biologics are added such as remicade or humira. Top down is the bottom up approach just backward.
When it comes to a child who spends time in two separate homes and has a chronic disease both sets of parents need to be on the same page. Both sets need to be proactive, communicate his needs and symptoms to each other, and active participation in dr apps. Sometimes that isn't always easy depending on the relationship the parents have, however if mom is giving him lialda and he doesn't get that while at dad's it can cause a flare up.
I hope he gets this flare kicked. It's no fun being sick (I'm also not implying I know your family relationship or the relationships between homes, I'm just currently going through this type of situation with my son).
First, dont quit steriods cold turkey. That can do a lot more harm, it can make his flare worse, cause mental issues, ect.
what meds is he on aside from steriods? Does he take his meds daily? What are the symptoms he's expiriencing aside from fatigue and issues? what is his diet like?
depending on the Dr they may want to do a bottom up or a top down approach. Bottom up starts with a basic maintance med like lialda if that doesn't work then a more powerful drug is added (an immune suppressant) like mercaptipourine if that doesn't seem to work then biologics are added such as remicade or humira. Top down is the bottom up approach just backward.
When it comes to a child who spends time in two separate homes and has a chronic disease both sets of parents need to be on the same page. Both sets need to be proactive, communicate his needs and symptoms to each other, and active participation in dr apps. Sometimes that isn't always easy depending on the relationship the parents have, however if mom is giving him lialda and he doesn't get that while at dad's it can cause a flare up.
I hope he gets this flare kicked. It's no fun being sick (I'm also not implying I know your family relationship or the relationships between homes, I'm just currently going through this type of situation with my son).
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