Before I share my story i just want to thank all of you for putting out so much helpful information for newbies! This forum is wonderful.
Our story began nearly 7 years ago when my then 4 year old son began holding his stool....it was painful and the cycle was vicious....he would bleed and cry and we weren't sure if it was a control thing or something else. Eventually, we began to see small fissures on his anus and noticed blood was in his stool. His growth also became almost non existent. One morning he awoke with an odd swelling in his cheek...looked like a golfball in his mouth....over the next few months we visited several specialist (Oral surgeons,rheumatologists, gastroenterologists,allergy doctors,endocronologists, ear, nose throat specialists etc) all of them attempting to come up with some diagnoses...all of themm agreeing he was a mystery.
When a biopsy was performed of his cheek lining granulomas were found.....his blood work was unremarkable and he did not test positive on IBD panel or for Celiac. An endoscopy/colonoscopy was performed and the Gastro felt it was most likely crohns disease.....but the tissue samples came back negative....she still wanted him on Remicade and a slew of heavy hitting drugs.....we decided to get a second opinion at the Children's Hospital.....they did there own barium follow thru, looked at all of his test results and concluded that there was not enough "proof" to say he had crohns disease.....so for the next several years we visited the gastro for check ups, saw the endo for weight checks....gave miralax when necessary and fed him pediasure to up his calorie counts. He still was slowed growth....but over time the fissures went away and the only symptom was he was on the small side.
I always had a haunting feeling that we were waiting for the "other shoe to drop." Fast forward to Last summer.....Gavin developed a swollen penis and scrotum. Very odd...we took him to hi pediatrician who suggested oatmeal baths....etc...when we realized it was not a skin issue....we went to a urologist....he was puzzled....we mentioned Gavin's history with odd swellings....he was not impressed it was related. He gave us a script for Prednisone....and off we went....my poor boy finally gained some weight over the course of the 3 months he was on it....but suffered from the moon face and just didnt look like himself at all...the swelling was better on the scrotum but his shaft was still swollen....I began researching.....and found something called Metastatic crohns disease....very rare.....printed out all of the medical articles and called the gastroenterologist/urologists.....they were intrigued....but not convinced. Over the next few months the swelling was down he was off steroids....was going along fine and then bam...the swelling came back again! This time we opted for another endoscopy/colonoscopy to once again rule out crohns disease....but this time, he tested positive for one of the IBD panels, and his gastro was able to access the terminal ileum which wasn't done the first time....he felt it was now crohns disease. When the biopsy results came back it was determined it was indeed mild crohn's disease. Other than the penile swelling and slowed growth my child is the picture of health....you would never know he had a chronic disease.
It has been a long, sad, emotional journey.....and we are still unsure of how we want to proceed with treatment. His doctor wants him on Apriso....2 pills/day....the urologist didnt want to do steroids again and the only way to confirm metastatic crohns is through a biopsy which we opted not to do since we already know he has it in the TI. He is on prevacid 30 daily for some gastritis and we are giving him vitamins and ensure daily.....we have not started the Apriso.....we are on the fence about starting something like that....wondering about changing his diet to clean eating? Thinking about doing that for 6 months and seeing if it effects anything....the confusing part is we will not know either way because he is asymptomatic.....they do not think the Apriso will help the penile swelling. This is a VERY confusing time for us as parents....to be entrusted with such potential life changing decisions...the medicine can cause side effects....and not using it can be detrimental as well......we are so confused and I feel like a bad parent for not knowing what the right move is.
Our story began nearly 7 years ago when my then 4 year old son began holding his stool....it was painful and the cycle was vicious....he would bleed and cry and we weren't sure if it was a control thing or something else. Eventually, we began to see small fissures on his anus and noticed blood was in his stool. His growth also became almost non existent. One morning he awoke with an odd swelling in his cheek...looked like a golfball in his mouth....over the next few months we visited several specialist (Oral surgeons,rheumatologists, gastroenterologists,allergy doctors,endocronologists, ear, nose throat specialists etc) all of them attempting to come up with some diagnoses...all of themm agreeing he was a mystery.
When a biopsy was performed of his cheek lining granulomas were found.....his blood work was unremarkable and he did not test positive on IBD panel or for Celiac. An endoscopy/colonoscopy was performed and the Gastro felt it was most likely crohns disease.....but the tissue samples came back negative....she still wanted him on Remicade and a slew of heavy hitting drugs.....we decided to get a second opinion at the Children's Hospital.....they did there own barium follow thru, looked at all of his test results and concluded that there was not enough "proof" to say he had crohns disease.....so for the next several years we visited the gastro for check ups, saw the endo for weight checks....gave miralax when necessary and fed him pediasure to up his calorie counts. He still was slowed growth....but over time the fissures went away and the only symptom was he was on the small side.
I always had a haunting feeling that we were waiting for the "other shoe to drop." Fast forward to Last summer.....Gavin developed a swollen penis and scrotum. Very odd...we took him to hi pediatrician who suggested oatmeal baths....etc...when we realized it was not a skin issue....we went to a urologist....he was puzzled....we mentioned Gavin's history with odd swellings....he was not impressed it was related. He gave us a script for Prednisone....and off we went....my poor boy finally gained some weight over the course of the 3 months he was on it....but suffered from the moon face and just didnt look like himself at all...the swelling was better on the scrotum but his shaft was still swollen....I began researching.....and found something called Metastatic crohns disease....very rare.....printed out all of the medical articles and called the gastroenterologist/urologists.....they were intrigued....but not convinced. Over the next few months the swelling was down he was off steroids....was going along fine and then bam...the swelling came back again! This time we opted for another endoscopy/colonoscopy to once again rule out crohns disease....but this time, he tested positive for one of the IBD panels, and his gastro was able to access the terminal ileum which wasn't done the first time....he felt it was now crohns disease. When the biopsy results came back it was determined it was indeed mild crohn's disease. Other than the penile swelling and slowed growth my child is the picture of health....you would never know he had a chronic disease.
It has been a long, sad, emotional journey.....and we are still unsure of how we want to proceed with treatment. His doctor wants him on Apriso....2 pills/day....the urologist didnt want to do steroids again and the only way to confirm metastatic crohns is through a biopsy which we opted not to do since we already know he has it in the TI. He is on prevacid 30 daily for some gastritis and we are giving him vitamins and ensure daily.....we have not started the Apriso.....we are on the fence about starting something like that....wondering about changing his diet to clean eating? Thinking about doing that for 6 months and seeing if it effects anything....the confusing part is we will not know either way because he is asymptomatic.....they do not think the Apriso will help the penile swelling. This is a VERY confusing time for us as parents....to be entrusted with such potential life changing decisions...the medicine can cause side effects....and not using it can be detrimental as well......we are so confused and I feel like a bad parent for not knowing what the right move is.
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