Our son Kyle was diagnosed with Crohn's in February of 2008, just 2 weeks prior to his 9th birthday. He was anemic at the time, and had been having issues for much longer than my wife and I knew prior to hospitalizing him. We look back now at pictures and memories of the 6-9 months leading to his diagnosis and simply feel ill at what we didn't notice at the time. He suffered much longer than any 8 year old should. Needless to say, we now have poo patrol and poo control in our household!
He was treated with Prednisone, 2 units of blood, and put on Pentasa which he has been taking since his diagnosis. He also takes omeprazole/prilosec and miralax on a daily basis.
Other than that, he has been quite problem free up until about 5 weeks ago. He started noticing a bit of diarrhea and sometimes blood along with it. We contacted his doctor (new doc since we moved about a year ago) and he was put on Prednisone again, and his pentasa dosage was also upped since he had actually grown quite a bit in the past 9 months. Over the course of a few weeks we started seeing improvement, but then things stagnated a bit and he actually started having some nausea and vomiting. We were just getting ready to take him back up North to visit friends and family, so we scheduled an appointment and got him looked at. His Prednisone (which was in the weaning stage) was re-upped, and an antibiotic was added due to suspicion of c-diff infection. He was feeling ok, so we left for our 10 day trip.
He was doing ok until about halfway into the trip, when he started going downhill, and fast. He had almost constant nausea and was not eating much. He was making many, and long, bathroom trips with poos ranging from a 1 (on a scale of 1-5 with 5 being bad) to a 3-4. By the last two days of the trip, he basically was able to do nothing other than sit around and feel sick. I knew he was getting dehydrated, and tried to get as much clear fluids in him as possible, but apparently it was not enough.
We got back to FL on Tuesday night, and he ended up bedridden on Wednesday unable to keep anything down. We had called the Doc several times and gotten several different meds to try for the nausea, but nothing worked.
My wife took him to see the Doc (who is over 90 minutes away) yesterday, prepared with bags packed for a hospital stay. He had to be taken into the doctor's office in a wheelchair at this point since he was so weak. They gave him IV fluids and some anti-nausea meds, and had some discussions about changing his meds. In this case, the plan was to start Humira to try to get him into remission. The Doctor wanted to do a colonoscopy and endoscopy on him, and we decided to just get him admitted to Arnold Palmer Children's Hospital in Orlando and do the procedures today. He threw up almost immediately after being admitted, and was then forced to complete the "prep" for the procedures. That made him extra miserable, causing extreme nausea, very serious abdominal pain, and some vomiting.
On top of that, his IV "blew out" his vein, and filled up his arm with fluid. He has deep veins, and they roll, so getting IVs in him is difficult and painful. The poor guy is having a bad go of it...
His colonoscopy today was not good. His entire large intestine is seriously inflamed and ulcerated. The Doctor did not even get into his small intestine as he didnt want to cause any further problems. His upper scope looked good, so that was some "good news" if there is such a thing. They treated him with hydrocortisone and are planning a Remicade infusion tomorrow. They need to get the inflammation down and get him able to eat, drink, and function before he can come home to recover.
We are overwhelmed by the situation right now, as we had gotten so complacent about his disease over the past 3 years, as he had almost no issues. This was a serious wake-up call, and it is not close to being over yet. We are just hoping that he responds to treatment and that more drastic options don't need to be considered yet. We just want him to have a "normal" life, whatever that means...
We have four children, one with a certain autoimmune disorder (6 year old son with type I diabetes diagnosed at Age 4), one with asthma (12 year old daughter and twin of Kyle), and another (14 year old daughter) who has shown high ANA and other markers in testing, but has come up with a diagnosis so far of Fibromyalgia (originally suspected RA). We are still working on learning more about her, and currently gathering medical records to try to find the right doctors to see if she can be helped. Her bloodwork points to Celiac or possibly Lupus, but we will need help to figure it out.
All of these things showed up in our children in a period of less than three years. We moved. Far away. Of course we moved to the gulf coast of Florida, and just found out the hard way that my wife is horribly allergic to Fire Ant stings. When it rains it pours!!
Something isn't right. Not sure what, maybe it is just that my wife and I are a bad gene combination! Anyway, I have been perusing the forum and gathering much information, so just thought I would "dump" a bit. Thanks to everyone for their openness and understanding in here. Reading some of this stuff is scary, but it is also reassuring...
Steve
He was treated with Prednisone, 2 units of blood, and put on Pentasa which he has been taking since his diagnosis. He also takes omeprazole/prilosec and miralax on a daily basis.
Other than that, he has been quite problem free up until about 5 weeks ago. He started noticing a bit of diarrhea and sometimes blood along with it. We contacted his doctor (new doc since we moved about a year ago) and he was put on Prednisone again, and his pentasa dosage was also upped since he had actually grown quite a bit in the past 9 months. Over the course of a few weeks we started seeing improvement, but then things stagnated a bit and he actually started having some nausea and vomiting. We were just getting ready to take him back up North to visit friends and family, so we scheduled an appointment and got him looked at. His Prednisone (which was in the weaning stage) was re-upped, and an antibiotic was added due to suspicion of c-diff infection. He was feeling ok, so we left for our 10 day trip.
He was doing ok until about halfway into the trip, when he started going downhill, and fast. He had almost constant nausea and was not eating much. He was making many, and long, bathroom trips with poos ranging from a 1 (on a scale of 1-5 with 5 being bad) to a 3-4. By the last two days of the trip, he basically was able to do nothing other than sit around and feel sick. I knew he was getting dehydrated, and tried to get as much clear fluids in him as possible, but apparently it was not enough.
We got back to FL on Tuesday night, and he ended up bedridden on Wednesday unable to keep anything down. We had called the Doc several times and gotten several different meds to try for the nausea, but nothing worked.
My wife took him to see the Doc (who is over 90 minutes away) yesterday, prepared with bags packed for a hospital stay. He had to be taken into the doctor's office in a wheelchair at this point since he was so weak. They gave him IV fluids and some anti-nausea meds, and had some discussions about changing his meds. In this case, the plan was to start Humira to try to get him into remission. The Doctor wanted to do a colonoscopy and endoscopy on him, and we decided to just get him admitted to Arnold Palmer Children's Hospital in Orlando and do the procedures today. He threw up almost immediately after being admitted, and was then forced to complete the "prep" for the procedures. That made him extra miserable, causing extreme nausea, very serious abdominal pain, and some vomiting.
On top of that, his IV "blew out" his vein, and filled up his arm with fluid. He has deep veins, and they roll, so getting IVs in him is difficult and painful. The poor guy is having a bad go of it...
His colonoscopy today was not good. His entire large intestine is seriously inflamed and ulcerated. The Doctor did not even get into his small intestine as he didnt want to cause any further problems. His upper scope looked good, so that was some "good news" if there is such a thing. They treated him with hydrocortisone and are planning a Remicade infusion tomorrow. They need to get the inflammation down and get him able to eat, drink, and function before he can come home to recover.
We are overwhelmed by the situation right now, as we had gotten so complacent about his disease over the past 3 years, as he had almost no issues. This was a serious wake-up call, and it is not close to being over yet. We are just hoping that he responds to treatment and that more drastic options don't need to be considered yet. We just want him to have a "normal" life, whatever that means...
We have four children, one with a certain autoimmune disorder (6 year old son with type I diabetes diagnosed at Age 4), one with asthma (12 year old daughter and twin of Kyle), and another (14 year old daughter) who has shown high ANA and other markers in testing, but has come up with a diagnosis so far of Fibromyalgia (originally suspected RA). We are still working on learning more about her, and currently gathering medical records to try to find the right doctors to see if she can be helped. Her bloodwork points to Celiac or possibly Lupus, but we will need help to figure it out.
All of these things showed up in our children in a period of less than three years. We moved. Far away. Of course we moved to the gulf coast of Florida, and just found out the hard way that my wife is horribly allergic to Fire Ant stings. When it rains it pours!!
Something isn't right. Not sure what, maybe it is just that my wife and I are a bad gene combination! Anyway, I have been perusing the forum and gathering much information, so just thought I would "dump" a bit. Thanks to everyone for their openness and understanding in here. Reading some of this stuff is scary, but it is also reassuring...
Steve
and your other children. 
