- Joined
- May 17, 2012
- Messages
- 18
Ok-I have read that it can be beneficial to tell your story in order to get better acquainted with the forum community. Since I plan on being here for a while I decided to take the plunge & bare all lol...
My son, Jake is a strait A student -has only had after school detention once (because I kept getting him to school late) and had never had any real health issues until 2010. Around August 2010 Jake age 16 began having symptoms of what appeared to be a stomach virus. We took him to the local doctor who placed him on antibiotics-After loosing 25lbs and submitting some lovely stool samples he was finally referred to a pediatric gastroenterologist.
He was ordered to complete a barium swallow (THIS IS THE WORST SUBSTANCE THAT HAS EVER BEEN INVENTED) and a colonoscopy/endoscope.
I prayed-wished -hoped crossed fingers & toes that it wouldn’t be Crohns.
Right after the colonoscopy the Doc said it didn’t look like Crohns.
On 11/10/2010 I got a call at work informing me that it was Crohns. A prescription for pentasa and enticort was called in. His father & I sat down with him that evening and had to tell him-His dad said ya know its like luggage or Herpes (Dad’s attempt to lighten the situation) it never goes away-We were devastated-He took it like a trooper-No tears-No freak out -He just calmly said OK-What do we do now.
He was finally taken off the Enticort and only took Pentasa until last month-
In April his labs were not good so his Ped GI finally referred him to an adult GI. The Pentasa had done nothing for him-His ped GI never called us after the labs-During routine check ups she would just say his levels were high but that was normal for Crohns etc... Come to find out he was just getting worse-I asked about the lab results-she actually said-"We don’t treat labs we treat symptoms & he doesn’t have any" -I knew this was NOT right
His new adult GI ordered all new labs-ct scan-colonoscopy/endoscope no barium!! WooHoo!!
The almost 2years of light treatment have resulted in severely diseased upper & lower bowels-ulcers-a polyp-a fistula beginning to form and his ileum almost completely closed. He started azthropine and is scheduled to begin Remicade Monday. I am fearful of the side effects but Hopeful that this might just be the medication he needs.
Through it all he maintained a part time job & strait A's -he missed some school-I tried my best to explain everything to each teacher at the beginning of each semester via e-mail-Sadly most of them never read it.
The teachers who did though were AWSOME!!! One wasn’t going to let him make up missed work-I called her & was like do you have any idea of what this is like-Do you have any idea of what its like to try to concentrate when your in pain & afraid you might have an accident?!!
Through all of this I have been disgusted by the Alabama education system in my county. They have no understanding of what these kids go through. He did get a full ride scholarship for College at Troy State university & is scheduled to begin in the Fall.
So we are here-He is to begin Remicade Monday – attend National Honor Society Awards Tuesday & Finally graduate Thursday. I am hoping and praying that he does not have a bad reaction but honestly if he does I will simply carry him across the stage
My son, Jake is a strait A student -has only had after school detention once (because I kept getting him to school late) and had never had any real health issues until 2010. Around August 2010 Jake age 16 began having symptoms of what appeared to be a stomach virus. We took him to the local doctor who placed him on antibiotics-After loosing 25lbs and submitting some lovely stool samples he was finally referred to a pediatric gastroenterologist.
He was ordered to complete a barium swallow (THIS IS THE WORST SUBSTANCE THAT HAS EVER BEEN INVENTED) and a colonoscopy/endoscope.
I prayed-wished -hoped crossed fingers & toes that it wouldn’t be Crohns.
Right after the colonoscopy the Doc said it didn’t look like Crohns.
On 11/10/2010 I got a call at work informing me that it was Crohns. A prescription for pentasa and enticort was called in. His father & I sat down with him that evening and had to tell him-His dad said ya know its like luggage or Herpes (Dad’s attempt to lighten the situation) it never goes away-We were devastated-He took it like a trooper-No tears-No freak out -He just calmly said OK-What do we do now.
He was finally taken off the Enticort and only took Pentasa until last month-
In April his labs were not good so his Ped GI finally referred him to an adult GI. The Pentasa had done nothing for him-His ped GI never called us after the labs-During routine check ups she would just say his levels were high but that was normal for Crohns etc... Come to find out he was just getting worse-I asked about the lab results-she actually said-"We don’t treat labs we treat symptoms & he doesn’t have any" -I knew this was NOT right
His new adult GI ordered all new labs-ct scan-colonoscopy/endoscope no barium!! WooHoo!!
The almost 2years of light treatment have resulted in severely diseased upper & lower bowels-ulcers-a polyp-a fistula beginning to form and his ileum almost completely closed. He started azthropine and is scheduled to begin Remicade Monday. I am fearful of the side effects but Hopeful that this might just be the medication he needs.
Through it all he maintained a part time job & strait A's -he missed some school-I tried my best to explain everything to each teacher at the beginning of each semester via e-mail-Sadly most of them never read it.
The teachers who did though were AWSOME!!! One wasn’t going to let him make up missed work-I called her & was like do you have any idea of what this is like-Do you have any idea of what its like to try to concentrate when your in pain & afraid you might have an accident?!!
Through all of this I have been disgusted by the Alabama education system in my county. They have no understanding of what these kids go through. He did get a full ride scholarship for College at Troy State university & is scheduled to begin in the Fall.
So we are here-He is to begin Remicade Monday – attend National Honor Society Awards Tuesday & Finally graduate Thursday. I am hoping and praying that he does not have a bad reaction but honestly if he does I will simply carry him across the stage
