I am so glad to have found this forum/support group. I need this! Here is our story: I am mom to a 13 y.o. boy who was diagnosed with Crohn's Disease on Valentines Day 2014 and a 7 y.o. girl who is healthy so far. My son was sick for over a year before diagnosis with recurrent stomach pain, fatigue, nausea, pale with dark circles, often looking feverish but no fever, and occasional diarrhea & vomiting (but rarely). He went from being a vibrant, happy and well-adjusted boy at the beginning of 6th grade to pale, sickly, anxious and irritable/angry by Christmas of that same year (2012).
Over the next year he was seen by pediatric GI and infectious disease specialists at UCSF. All blood and stool tests came back normal and he was told again and again that he was "perfectly healthy". Thinking that his physical symptoms might be psychosomatic I took him to a child psychologist. Then in January of 2014 he developed an inflamed and very painful anal skin tag. When this did not get better after 4 weeks of treatment I finally expressed my frustration loudly and clearly (!) to his pediatrician who got us seen by a different pediatric GI specialist that same day. Colonoscopy and endoscopy done 2 weeks later revealed granulomas in his terminal ileum and a diagnosis of Crohn's. It was only after he was diagnosed that the plateau in his growth over 2 years (he had dropped from 50th percentile in height and weight to 10th) and his low vitamin D level made more sense. On Valentine's night when we told our son he has Crohn's Disease he looked at me with tears in his eyes and said, "You mean it's NOT all in my head?"
He did 12 weeks of 90% Enteral Nutrition and sulfasalazine but switched to Pentasa pretty quickly. After another 2 months of 70% enteral nutrition, 2 iron infusions (ferritin was 16), a disastrous trial on Zoloft (for depression and anxiety), and multiple second opinions we gave up on the EEN and began Remicade. To date he has had 3 Remicade infusions and is on a low dose of Methotrexate, Pentasa, Prevacid, Folic Acid, Vitamin D, Omega 3, Magnesium, Zinc and Rhodiola. He seemed to be improving physically with the Remicade (more energy, color improved, less belly pain, gained 13 pounds and 2 inches and is starting puberty) until last week. In the last week he has thrown up twice, had bad belly pain one day, nausea daily, fatigue and looks pale again. At first we thought he just had a stomach flu but now we are more worried... The only inflammation marker that has ever shown up is a slightly elevated calprotectin. We are scheduled to retest that just before the next Remi infusion (in 4 weeks) and will test his blood Remi levels and antibody formation then too. But it has been hard to know if he is in remission or not. The doctors have said he has "mild Crohn's" and yet he has been so darn sick!
I am very curious to hear about your children's emotional adjustment to having Crohn's or UC. My son -- diagnosed 2 months before his 13th birthday -- has been completely flattened by this. He sees a therapist who has UC (so she knows what living w/ IBD is like). While he is not as depressed as in the initial 3 months after diagnosis he is very anxious and pretty much socially phobic. The combination of physical symptoms and anxiety, as well as what looks to be a significant sleep disorder (confusional arousal disorder, being evaluated at Stanford Sleep Disorders clinic) have kept him from being able to go to school. He just gets so anxious and stressed by it that his physical symptoms escalate. So we hired a home-school teacher to keep him progressing through 8th grade. He was on a traveling soccer team for 4 years which he loved, but he can't play now. He has kind of lost the life he had. And for me, it is so hard to figure out day to day what is related to the Crohn's, what is due to the fact that his sleep is disrupted and broken, what is because of anxiety, why he is so anxious and what is "simply" due to being a pubescent 13 y.o. boy!
Sorry this is so long. I would appreciate hearing whatever any of you are comfortable sharing about your teen's emotional coping with an IBD diagnosis and if any of your kids this much social anxiety. Sorry that any of our kids have to deal with this at all.
Over the next year he was seen by pediatric GI and infectious disease specialists at UCSF. All blood and stool tests came back normal and he was told again and again that he was "perfectly healthy". Thinking that his physical symptoms might be psychosomatic I took him to a child psychologist. Then in January of 2014 he developed an inflamed and very painful anal skin tag. When this did not get better after 4 weeks of treatment I finally expressed my frustration loudly and clearly (!) to his pediatrician who got us seen by a different pediatric GI specialist that same day. Colonoscopy and endoscopy done 2 weeks later revealed granulomas in his terminal ileum and a diagnosis of Crohn's. It was only after he was diagnosed that the plateau in his growth over 2 years (he had dropped from 50th percentile in height and weight to 10th) and his low vitamin D level made more sense. On Valentine's night when we told our son he has Crohn's Disease he looked at me with tears in his eyes and said, "You mean it's NOT all in my head?"
He did 12 weeks of 90% Enteral Nutrition and sulfasalazine but switched to Pentasa pretty quickly. After another 2 months of 70% enteral nutrition, 2 iron infusions (ferritin was 16), a disastrous trial on Zoloft (for depression and anxiety), and multiple second opinions we gave up on the EEN and began Remicade. To date he has had 3 Remicade infusions and is on a low dose of Methotrexate, Pentasa, Prevacid, Folic Acid, Vitamin D, Omega 3, Magnesium, Zinc and Rhodiola. He seemed to be improving physically with the Remicade (more energy, color improved, less belly pain, gained 13 pounds and 2 inches and is starting puberty) until last week. In the last week he has thrown up twice, had bad belly pain one day, nausea daily, fatigue and looks pale again. At first we thought he just had a stomach flu but now we are more worried... The only inflammation marker that has ever shown up is a slightly elevated calprotectin. We are scheduled to retest that just before the next Remi infusion (in 4 weeks) and will test his blood Remi levels and antibody formation then too. But it has been hard to know if he is in remission or not. The doctors have said he has "mild Crohn's" and yet he has been so darn sick!
I am very curious to hear about your children's emotional adjustment to having Crohn's or UC. My son -- diagnosed 2 months before his 13th birthday -- has been completely flattened by this. He sees a therapist who has UC (so she knows what living w/ IBD is like). While he is not as depressed as in the initial 3 months after diagnosis he is very anxious and pretty much socially phobic. The combination of physical symptoms and anxiety, as well as what looks to be a significant sleep disorder (confusional arousal disorder, being evaluated at Stanford Sleep Disorders clinic) have kept him from being able to go to school. He just gets so anxious and stressed by it that his physical symptoms escalate. So we hired a home-school teacher to keep him progressing through 8th grade. He was on a traveling soccer team for 4 years which he loved, but he can't play now. He has kind of lost the life he had. And for me, it is so hard to figure out day to day what is related to the Crohn's, what is due to the fact that his sleep is disrupted and broken, what is because of anxiety, why he is so anxious and what is "simply" due to being a pubescent 13 y.o. boy!
Sorry this is so long. I would appreciate hearing whatever any of you are comfortable sharing about your teen's emotional coping with an IBD diagnosis and if any of your kids this much social anxiety. Sorry that any of our kids have to deal with this at all.
Any chance of getting the faecal calprotectin done now? 
