- Joined
- Jul 30, 2014
- Messages
- 56
I'm the mother to a 13 year old son, Ben who was just diagnosed with Crohn's last month after completing an endoscopy and colonoscopy.
Ben started failing to put on weight and height about 2 1/2 years ago when he was 11. The pediatrician sent us to endocrinology for a work up. Through blood tests the growth hormones were checked and seemed to be normal. Hand x-rays showed delayed bone growth. They mentioned some slight inflammation markers but decided he must have been getting a cold. Sent us home with the advice "He is a late bloomer" and we were to return in 1 year.
1 year later we returned, he still hadn't grown. More blood tests. More slight inflammation. More x-rays. Sent home again for another year.
He went to his pediatrician for his 13 year check up and we were sent to endocrine at Pittsburgh's Children's Hospital and they put him on a high calorie, high fat diet for 6 months. I gained 5 lbs. and he gained nothing. He was now 13 years old, 54 inches and 66 lbs. Again with inflammation in blood work, but now malnutrition and anemia was found. They finally determined that there was no more they could do for him and sent him to G.I. to decide if there was an absorption issue.
He was scheduled for his scopes immediately and within 2 weeks of transfer to G.I. he had a diagnosis of Crohn's. There wasn't enough of the disease to explain the sig. delayed growth so they ordered a CT scan.
The results of the CT scan are terrifying and I still cry when trying to explain the phone call from the doctor.
She said his inflammation in the small intestine is significant and to the degree that would normally require surgery - but so much of his small intestine is affected that there would be none left if they operated. It was like being slammed against a brick wall.
She recommended that he get several vaccinations that didn't take as a child then 4 weeks later to begin a regimen of Remicade, Methotrexate, and steriods via IV. He begins his treatment 2 days before school begins, August 25th.
I am overwhelmed with trying to get him to drink his supplement shakes, reading books, learning about nutrition, crying, worrying, scheduling dr. appts, and fighting with insurance companies.
Even if no one reads this, it has been therapeutic to get this all off my chest. Thank you all so much for everything you post here, it helps so much to know that nearly any question I have has already been discussed here and I can find an answer.
Ben started failing to put on weight and height about 2 1/2 years ago when he was 11. The pediatrician sent us to endocrinology for a work up. Through blood tests the growth hormones were checked and seemed to be normal. Hand x-rays showed delayed bone growth. They mentioned some slight inflammation markers but decided he must have been getting a cold. Sent us home with the advice "He is a late bloomer" and we were to return in 1 year.
1 year later we returned, he still hadn't grown. More blood tests. More slight inflammation. More x-rays. Sent home again for another year.
He went to his pediatrician for his 13 year check up and we were sent to endocrine at Pittsburgh's Children's Hospital and they put him on a high calorie, high fat diet for 6 months. I gained 5 lbs. and he gained nothing. He was now 13 years old, 54 inches and 66 lbs. Again with inflammation in blood work, but now malnutrition and anemia was found. They finally determined that there was no more they could do for him and sent him to G.I. to decide if there was an absorption issue.
He was scheduled for his scopes immediately and within 2 weeks of transfer to G.I. he had a diagnosis of Crohn's. There wasn't enough of the disease to explain the sig. delayed growth so they ordered a CT scan.
The results of the CT scan are terrifying and I still cry when trying to explain the phone call from the doctor.
She said his inflammation in the small intestine is significant and to the degree that would normally require surgery - but so much of his small intestine is affected that there would be none left if they operated. It was like being slammed against a brick wall.
She recommended that he get several vaccinations that didn't take as a child then 4 weeks later to begin a regimen of Remicade, Methotrexate, and steriods via IV. He begins his treatment 2 days before school begins, August 25th.
I am overwhelmed with trying to get him to drink his supplement shakes, reading books, learning about nutrition, crying, worrying, scheduling dr. appts, and fighting with insurance companies.
Even if no one reads this, it has been therapeutic to get this all off my chest. Thank you all so much for everything you post here, it helps so much to know that nearly any question I have has already been discussed here and I can find an answer.
