- Joined
- May 23, 2013
- Messages
- 15
My son is in the process of being diagnosed with Crohn's Disease. I don't like to make my problems other people's problems so I was hesitant to post in here, but my wife and I are overwhelmed and so here I am. My son Zachary is 3 1/2 years old, and we've been struggling with GI issues since he was born. Within a day or two of his birth we realized that he seemed to be allergic to my wife's breast milk so we started feeding him soy formula. It became quickly apparent that the soy wasn't the solution since Zack was still screaming with every feeding as if someone had lit him on fire. Ultimately our pediatrician diagnosed him with GERD and prescribed Elecare formula as well as antacids. We were told that he would grow out of the GERD by 12-18 months and when we weaned him off the medication he seemed to be doing well. That's when the other issues started. He began to develop chronic diarrhea that left him with the worst diaper rashes I've ever seen on a child. His skin would literally blister after just a few minutes exposed to the feces and he has had several staph infections as a result of this. We assumed that there was an allergy that we were missing so we had him allergy tested while we began to systematically eliminate the foods that he seemed to react to. To our surprise, the allergy testing was completely negative despite his consistent reactions to certain foods. In the end, my wife and I have limited his diet ourselves in an attempt to discover what these "allergies" were. As of last month we had eliminated dairy, citric acid, cinnamon, oats, tomatoes, apples, oranges, strawberries, white potatoes, and tameren. Despite all these efforts, Zachary continued to have reactions.
This past November something changed. All of a sudden Zack was complaining of abdominal pain every single day and he was often refusing to eat. He would tell us that his food didn't taste right but we couldn't find the connection. Foods he used to love were no longer palatable. At the same time as this was going on his bowel movements became much more frequent (sometimes 10-12 times a day). He also began insisting that we give him ice cold water and if the water wasn't cold anymore he would insist it be replaced. As if this wasn't enough he began to develop a full body rash that would get more intense after meals and fade in between. We had no idea what was going on. We assumed that this was all somehow an allergic reaction so we changed his diet to a gluten free one. This resolved the rash but the other symptoms remained. We took him back to the gastroenterologist.
The doctor did several blood tests and when the results came back he told us that Zachary had 3 out of the 5 indicators for Crohn's. On Monday they did an upper GI series that seems to have confirmed the diagnosis. There is "spiculation" that indicates inflammation in a section of his intestines near his ileum. We are now waiting for a return phone call from the doctor to schedule a colonoscopy and to discuss treatment.
I apologize for the long background but I'm completely overwhelmed and I want to put all this information out there so that maybe someone can identify with our experience. Like I said, it's not my nature to vent publicly or to impose my problems on others but I simply do not know what to do. I'm angry, although I don't know who or what I'm angry at, and I'm terrified of losing my son. Our 16 year old babysitter died from complications of Crohn's just a few months ago. I refuse to allow that to happen to my son. I feel like I can't breathe.
I will do whatever is necessary to help my son manage this disease and to make sure that it does not affect his quality of life. I want him to live a long and healthy life. Any advice or input you can offer would be greatly appreciated.
This past November something changed. All of a sudden Zack was complaining of abdominal pain every single day and he was often refusing to eat. He would tell us that his food didn't taste right but we couldn't find the connection. Foods he used to love were no longer palatable. At the same time as this was going on his bowel movements became much more frequent (sometimes 10-12 times a day). He also began insisting that we give him ice cold water and if the water wasn't cold anymore he would insist it be replaced. As if this wasn't enough he began to develop a full body rash that would get more intense after meals and fade in between. We had no idea what was going on. We assumed that this was all somehow an allergic reaction so we changed his diet to a gluten free one. This resolved the rash but the other symptoms remained. We took him back to the gastroenterologist.
The doctor did several blood tests and when the results came back he told us that Zachary had 3 out of the 5 indicators for Crohn's. On Monday they did an upper GI series that seems to have confirmed the diagnosis. There is "spiculation" that indicates inflammation in a section of his intestines near his ileum. We are now waiting for a return phone call from the doctor to schedule a colonoscopy and to discuss treatment.
I apologize for the long background but I'm completely overwhelmed and I want to put all this information out there so that maybe someone can identify with our experience. Like I said, it's not my nature to vent publicly or to impose my problems on others but I simply do not know what to do. I'm angry, although I don't know who or what I'm angry at, and I'm terrified of losing my son. Our 16 year old babysitter died from complications of Crohn's just a few months ago. I refuse to allow that to happen to my son. I feel like I can't breathe.
I will do whatever is necessary to help my son manage this disease and to make sure that it does not affect his quality of life. I want him to live a long and healthy life. Any advice or input you can offer would be greatly appreciated.
