I joined this wonderful forum 1 yr ago, and thought it time to properly share our story. Thank you to all those who have been such a wonderful support and rich source of information.
My son is now 9 yrs old and in Jan 2013 at age 8, he got the flu. He seemed to get better for a couple days, then it appeared the flu came back-with a vengeance. For almost 2 wks he had a daily fever, which seemed to be gone each morning, but back by the time he got home from school. His fever would increase and at night he would have tremendous night sweats. He was fatigued and had low appetite. He was getting pale, and started to lose weight. He was having abdominal pain around his navel, which would increase after eating, and his abdomen was becoming distended. He was also getting mouth ulcers and joint pain. This seemed to come on so suddenly, however upon looking back, my son had hints of Crohn's from the time he was a toddler. The GI nurse later told me the flu my son had was "the tipping point".
I took my son to the walk-in clinic as I couldn't get an appt with our own GP that week. Thankfully, that doc was on top of things and ordered all kinds of bloodwork. The following wk we had an appt with our own GP who advised my son was anemic. Off I went to the ER of the children's hospital with two small kids (hubby away on business, of course!). The ER docs did more bloodwork, ultrasound (to rule out appendicitis), and X-Ray. We left at 2 am knowing my son had IBD or Celiac's Disease. How strange to wish for Celiac's!
The next morning we were at the GI clinic at the children's hospital. They performed an indium scan (white blood cell scan) over the next 2 days, which showed inflammation in the small intestine. We then had a working dx of Crohn's Disease. 2 wks later the GI performed upper and lower scopes which revealed granulomas in the colon, and our dx was confirmed-Crohn's of the jejunum.
Our GI offered 2 options for first line treatment-3 mos of Prednisone, or 3 mos of EEN via NG tube. During this time Imuran was started for maintenance. We took the prednisone route, although our GI was highly recommending EEN w/ NG tube. My son could not tolerate Imuran as it caused high fevers within 2 hours of taking the med, along with raised liver enzymes. He was switched to Methotrexate injections, which has proved to be his wonder drug. My son was on Prednisone for a total of 5 mos, as our GI does a very slow taper, which was held due to the failure of Imuran.
We are so happy and thankful that our son is doing well now, and is in remission. This has been an emotional roller coaster ride for our family. But, we have been fortunate to have excellent care, and a quick dx. A few days is long enough to worry if your child is dying! We belong to a wonderful church filled with caring people who devoted so much time to praying for our son. And we ourselves have prayed so hard for him, and still do. We have faith that God will look after our son, and in time of relapses and flares, He will give us the strength to carry on.
I hope our story may be a little help to some of you. I pray you all find good help and health, and the support you need.
My son is now 9 yrs old and in Jan 2013 at age 8, he got the flu. He seemed to get better for a couple days, then it appeared the flu came back-with a vengeance. For almost 2 wks he had a daily fever, which seemed to be gone each morning, but back by the time he got home from school. His fever would increase and at night he would have tremendous night sweats. He was fatigued and had low appetite. He was getting pale, and started to lose weight. He was having abdominal pain around his navel, which would increase after eating, and his abdomen was becoming distended. He was also getting mouth ulcers and joint pain. This seemed to come on so suddenly, however upon looking back, my son had hints of Crohn's from the time he was a toddler. The GI nurse later told me the flu my son had was "the tipping point".
I took my son to the walk-in clinic as I couldn't get an appt with our own GP that week. Thankfully, that doc was on top of things and ordered all kinds of bloodwork. The following wk we had an appt with our own GP who advised my son was anemic. Off I went to the ER of the children's hospital with two small kids (hubby away on business, of course!). The ER docs did more bloodwork, ultrasound (to rule out appendicitis), and X-Ray. We left at 2 am knowing my son had IBD or Celiac's Disease. How strange to wish for Celiac's!
The next morning we were at the GI clinic at the children's hospital. They performed an indium scan (white blood cell scan) over the next 2 days, which showed inflammation in the small intestine. We then had a working dx of Crohn's Disease. 2 wks later the GI performed upper and lower scopes which revealed granulomas in the colon, and our dx was confirmed-Crohn's of the jejunum.
Our GI offered 2 options for first line treatment-3 mos of Prednisone, or 3 mos of EEN via NG tube. During this time Imuran was started for maintenance. We took the prednisone route, although our GI was highly recommending EEN w/ NG tube. My son could not tolerate Imuran as it caused high fevers within 2 hours of taking the med, along with raised liver enzymes. He was switched to Methotrexate injections, which has proved to be his wonder drug. My son was on Prednisone for a total of 5 mos, as our GI does a very slow taper, which was held due to the failure of Imuran.
We are so happy and thankful that our son is doing well now, and is in remission. This has been an emotional roller coaster ride for our family. But, we have been fortunate to have excellent care, and a quick dx. A few days is long enough to worry if your child is dying! We belong to a wonderful church filled with caring people who devoted so much time to praying for our son. And we ourselves have prayed so hard for him, and still do. We have faith that God will look after our son, and in time of relapses and flares, He will give us the strength to carry on.
I hope our story may be a little help to some of you. I pray you all find good help and health, and the support you need.
