Hello, I am the mother of two boys...a 20 year old and a 7 year old. My little boy about two years ago began having problems with constipation. We took him to a pediatric GI and they said , "Clean out and then stay on Miralax." We did this and went back 6 months later, and they said, "Just stay on Miralax. He would go to the bathroom every day on Miralax. Three months ago, out of the blue, he developed red painful knots on his lower legs. We thought it may have been mosquito bites and applied aloe for about a week. They got bigger and I thought he may have gotten them infected so took him to our family practitioner. He diagnosed him with erythema nodosum and was going to do blood work the next week. That night he started running a fever and I called our dr who said to take him to the Children's Hospital ER an hour away. He called ahead to let them know we were coming. ..our family doc is great!
He was concerned about leukemia or TB. We spent a long night with blood tests and X-rays and 8 doctors checking out the painful knots on his legs. They said no TB, no leukemia, sent him home on Motrin four times a day until he could be seen by an infectious disease specialist. He continued running low grade fevers. The IDS saw him two weeks later and prescribed potassium iodide, ten day trial. During this time our son started having a lot of blood in his stools. An intern there mentioned that he needed to be scoped with the erythema nodosum and bloody stools...that it could be IBD. So we made another appointment with a pediatric GI specialist...took another two weeks. In that time I read that Motrin could cause bleeding so had him stop taking this. The potassium iodide did get rid of the ED. But after the 10 days , they started coming back.
The ped GI we feel is a really good doctor. She talked immediately about ulcerative colitis and possible Crohn's. She scheduled a colonoscopy and endoscopy for the next week.
The results that day she said were UC. It was overwhelming to us...in fact, I got lightheaded just looking at the photos of his colon and had to lay down. Sometimes my body does not respond the way I want it to.
We kept praying and she said she wanted to wait until the biopsies came back to start him on Prednisone to get the inflammation under control. The biopsies came back and she said there were "granulomas in the stomach and esophagus" and it was Crohn's. Although he does not have any active problems there and his linings are nice and pink.
He started on Prednisone and we prayed and cried (not in front of him). They gave us a comic book for kids to read about a boy with Crohn's and we signed up for a support group but the hospital is an hour a way so we just signed up mainly for the fact that information is shared between doctors to try to help understand IBD and children and help to see what is working where.
The dr talked about the meds...and listed all the side effects possible. I know they have to do that. But it scared us so much. We did not let him hear those and sent him out of the room to his grandparents who had come with us.
He was also shown to have anemia, Vitamin D3 deficiency, and other out of wack blood work that I still have yet to understand. Hoping to find out more about it this week. His SED rate was very high. So a week later he had to have a CT scan with contrasts. This was very stressful on him and us. The stuff they had him drink , he said burned all the way down.. . but he drank it, crying and praying for the Lord to help him. This test showed he did have some mild inflammation in his small bowel as well.
All of this time we were so sad....he was not feeling well and had started going to poop between 7 and 15 times a day.
Two weeks ago he started Methotrexate and we are hoping this will be what helps him and he can start weaning off the Prednisone. We have tried to encourage him, but he gets down.
A blessing is that we homeschool with my sister's family...so there is freedom of teaching when he is feeling well, letting him rest when he doesn't, and he does not have to worry about bathroom passes. He does not sleep well since starting the Prednisone, but I know it is necessary according to the dr.
It has been hard to find things for him to eat. I think he is scared to eat because of how it makes him feel.
We are blessed though because he is not having enormous pain as some people do. We have also found great relief when he does have belly pain with DoTerra oils, the DigestZen and Frankincense. These help immediately when we apply them to his belly.
I had him taking Slippery Elm which is what I used for irritable bowel syndrome and that seems to help some. He is also on a probiotic. We have been blessed that so far the medications have not made him vomit. He is also on folic acid, iron, Vitamin D3, and Zofran when he takes the Methotrexate.
Also we are thankful because he has never been able to swallow a pill. When finding out he would have to either learn to swallow a pill or get an injection, he was very motivated to learn. Our first attempts were failures, until a dear friend who is a nurse mentioned taking the pill in pudding and having him hold his nose and swallow. This worked! He was very happy he would not have to get a shot.
He is a trooper but I would love to have my happy, active little boy back. He seems very tired much of the time.
We continue to pray and our Lord has provided much peace and strength to all of us through this. We pray for healing and will pray for healing for those on this forum.
We are looking for parents to share with and learn from...we live in a rural area and the hospital is an hour away as I mentioned...so this forum I believe was a godsend.
I look forward to what we will learn here. I look forward to when Crohn's is not what consumes my mind and time.
I am also thankful because two months before all of this happened I switched jobs from a very stressful full time job to a part-time job that I find much joy in. This gives me more time to spend with my DS as well.
Thank you all for providing this forum. I tend to be rather wordy
He was concerned about leukemia or TB. We spent a long night with blood tests and X-rays and 8 doctors checking out the painful knots on his legs. They said no TB, no leukemia, sent him home on Motrin four times a day until he could be seen by an infectious disease specialist. He continued running low grade fevers. The IDS saw him two weeks later and prescribed potassium iodide, ten day trial. During this time our son started having a lot of blood in his stools. An intern there mentioned that he needed to be scoped with the erythema nodosum and bloody stools...that it could be IBD. So we made another appointment with a pediatric GI specialist...took another two weeks. In that time I read that Motrin could cause bleeding so had him stop taking this. The potassium iodide did get rid of the ED. But after the 10 days , they started coming back.
The ped GI we feel is a really good doctor. She talked immediately about ulcerative colitis and possible Crohn's. She scheduled a colonoscopy and endoscopy for the next week.
The results that day she said were UC. It was overwhelming to us...in fact, I got lightheaded just looking at the photos of his colon and had to lay down. Sometimes my body does not respond the way I want it to.
We kept praying and she said she wanted to wait until the biopsies came back to start him on Prednisone to get the inflammation under control. The biopsies came back and she said there were "granulomas in the stomach and esophagus" and it was Crohn's. Although he does not have any active problems there and his linings are nice and pink.
He started on Prednisone and we prayed and cried (not in front of him). They gave us a comic book for kids to read about a boy with Crohn's and we signed up for a support group but the hospital is an hour a way so we just signed up mainly for the fact that information is shared between doctors to try to help understand IBD and children and help to see what is working where.
The dr talked about the meds...and listed all the side effects possible. I know they have to do that. But it scared us so much. We did not let him hear those and sent him out of the room to his grandparents who had come with us.
He was also shown to have anemia, Vitamin D3 deficiency, and other out of wack blood work that I still have yet to understand. Hoping to find out more about it this week. His SED rate was very high. So a week later he had to have a CT scan with contrasts. This was very stressful on him and us. The stuff they had him drink , he said burned all the way down.. . but he drank it, crying and praying for the Lord to help him. This test showed he did have some mild inflammation in his small bowel as well.
All of this time we were so sad....he was not feeling well and had started going to poop between 7 and 15 times a day.
Two weeks ago he started Methotrexate and we are hoping this will be what helps him and he can start weaning off the Prednisone. We have tried to encourage him, but he gets down.
A blessing is that we homeschool with my sister's family...so there is freedom of teaching when he is feeling well, letting him rest when he doesn't, and he does not have to worry about bathroom passes. He does not sleep well since starting the Prednisone, but I know it is necessary according to the dr.
It has been hard to find things for him to eat. I think he is scared to eat because of how it makes him feel.
We are blessed though because he is not having enormous pain as some people do. We have also found great relief when he does have belly pain with DoTerra oils, the DigestZen and Frankincense. These help immediately when we apply them to his belly.
I had him taking Slippery Elm which is what I used for irritable bowel syndrome and that seems to help some. He is also on a probiotic. We have been blessed that so far the medications have not made him vomit. He is also on folic acid, iron, Vitamin D3, and Zofran when he takes the Methotrexate.
Also we are thankful because he has never been able to swallow a pill. When finding out he would have to either learn to swallow a pill or get an injection, he was very motivated to learn. Our first attempts were failures, until a dear friend who is a nurse mentioned taking the pill in pudding and having him hold his nose and swallow. This worked! He was very happy he would not have to get a shot.
He is a trooper but I would love to have my happy, active little boy back. He seems very tired much of the time.
We continue to pray and our Lord has provided much peace and strength to all of us through this. We pray for healing and will pray for healing for those on this forum.
We are looking for parents to share with and learn from...we live in a rural area and the hospital is an hour away as I mentioned...so this forum I believe was a godsend.
I look forward to what we will learn here. I look forward to when Crohn's is not what consumes my mind and time.
I am also thankful because two months before all of this happened I switched jobs from a very stressful full time job to a part-time job that I find much joy in. This gives me more time to spend with my DS as well.
Thank you all for providing this forum. I tend to be rather wordy