My son has Crohn's disease

Posted by mohamedanwar @mohamedanwar, Dec 7, 2021

My son has Crohn's disease due to a marrow defect. After analysis, it turned out to be a genetic disease. My son is two years old. The situation is complicated

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Hi @mohamedanwar, I added your discussion to the Digestive Health group and the About Kids & Teens group as well.
I can imagine that the situation is complicated. But getting a diagnosis is a good first step. What are the next steps in your son's care?

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@colleenyoung

Hi @mohamedanwar, I added your discussion to the Digestive Health group and the About Kids & Teens group as well.
I can imagine that the situation is complicated. But getting a diagnosis is a good first step. What are the next steps in your son's care?

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I don't know what to do. I took traditional medicines, then cortisone, then injected Humira 60 doses of 2 cm every week and there was no improvement. He suffers from severe disease in addition to failure to thrive.

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@mohamedanwar – I’m so sorry to hear about your son’s illness! As a parent it’s heartbreaking to see that the medicines have not helped.
Can you add some more information?
Is he being treated at a university Children’s Hospital?
I understand that the illness is causing his failure to thrive. Nutrients can not be absorbed easily. Does he get any intravenous or gastric tube feedings?
I have met several children with Crohn’s, but not as young as your son.
I would like to learn more about your son and your family situation.
Don’t you also find that talking about a problem with others helps clarify things in one’s mind?

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@astaingegerdm

@mohamedanwar – I’m so sorry to hear about your son’s illness! As a parent it’s heartbreaking to see that the medicines have not helped.
Can you add some more information?
Is he being treated at a university Children’s Hospital?
I understand that the illness is causing his failure to thrive. Nutrients can not be absorbed easily. Does he get any intravenous or gastric tube feedings?
I have met several children with Crohn’s, but not as young as your son.
I would like to learn more about your son and your family situation.
Don’t you also find that talking about a problem with others helps clarify things in one’s mind?

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Yes, it is booked every month in the university hospital, but there is no change in a continuous activity that deals with industrial coffee from Beta Junior, in addition to carrots and boiled potatoes only

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One of the wife's relatives was sick with Crohn's and died at the age of two

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The biggest problem is that hospitals provide poor service. We are in a third world country

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Now I understand why you get frustrated with the hospital care. Have you thought of going to another country in the West? Obviously, that would be a huge financial commitment. Have you researched medical institutions in developed countries where your son could be treated? Even Mayo Clinic? I assume there are Children’s Hospitals in the west that may have special programs for patients from third world countries. Can you research that? This is a crucial time for your son to get nutrients too.
I’ll do some more thinking too b

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@astaingegerdm

Now I understand why you get frustrated with the hospital care. Have you thought of going to another country in the West? Obviously, that would be a huge financial commitment. Have you researched medical institutions in developed countries where your son could be treated? Even Mayo Clinic? I assume there are Children’s Hospitals in the west that may have special programs for patients from third world countries. Can you research that? This is a crucial time for your son to get nutrients too.
I’ll do some more thinking too b

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Travel and treatment costs are huge. The local currency is equal to 16 per dollar. He found an institution that could afford the travel and treatment, but after searching for it online, he found a notorious research institution that treated the patient like lab mice and looked after their own interest, not the patient. refused to go

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@astaingegerdm

Now I understand why you get frustrated with the hospital care. Have you thought of going to another country in the West? Obviously, that would be a huge financial commitment. Have you researched medical institutions in developed countries where your son could be treated? Even Mayo Clinic? I assume there are Children’s Hospitals in the west that may have special programs for patients from third world countries. Can you research that? This is a crucial time for your son to get nutrients too.
I’ll do some more thinking too b

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Can you help me find a safe medical institution in the West that will bear the costs of travel and treatment??

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@mohamedanwar

Can you help me find a safe medical institution in the West that will bear the costs of travel and treatment??

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@mohamedanwar, many hospitals in Europe or North America have financial assistance programs. I suggest researching premier children's hospitals and look into financial assistance programs. For example, here is information about Charitable Care and Financial Assistance at Mayo Clinic https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance

There may also be virtual consult opportunities.

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@mohamedanwar

I don't know what to do. I took traditional medicines, then cortisone, then injected Humira 60 doses of 2 cm every week and there was no improvement. He suffers from severe disease in addition to failure to thrive.

Jump to this post

Get second and third opinions as soon as possible.

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