I just joined this forum this morning. I have read a few posts and you all seem like a great bunch so far, although honestly I'm not very thrilled to be in the situation that brought me here and am still in disbelief and shock. I hope I will find some comforting words from you all as a single parent with a 9 year old just diagnosed with Crohn's.
He had been having symptoms for a very long while, at least a year but perhaps 2 before we finally got down to some testing that led to his diagnosis. I feel horrible it's been that long. Our primary care doctor brushed his symptoms off as poor diet, and my son never complained. I could just tell he was going to the bathroom a lot and seemed uncomfortable. So we just began seeing a GI APN this summer (on my own referral...doctor suggested he cone for another checkup...negligent jerk!) and got our diagnosis on 8/22 after a biopsy from a colonoscopy. The colonoscopy also showed a fistula, so we will soon be going for an MRI to investigate more and I suppose make a plan for surgery? We won't actually meet his Crohn's doctor for a couple more weeks so we still don't have a treatment plan or anything.
I'm grief stricken at the thought of my child suffering for the rest of his life with this
His name is Cameron and he wants to be a video game designer when he grows up. He has been playing baseball for 2 years and does not yet have a position but prefers second base. He has the greatest circle of friends. He is a big brother to a 3yo sister and newborn brother. He is a very good reader, rather advanced for his age, and also enjoys science. He is a very noble, quiet, and sweet kid and it just hurts to know he will always have this. He copes well with the pain and diarrhea but the testing and meds have been hard on him. He is the kind of kid that gets deathly scared over a blood draw or shot. He was so scared when he was being put to sleep for the colonoscopy. I told him about the MRI coming up but not the surgery. Trying to let him take it one thing at a time.
Obviously, I'm hoping he will never experience any complications related to the disease. However, after reading some of you all's posts, I'm thinking i'd be better off ensuring he has the strength, courage, and confidence to overcome whatever challenges he must face.
As a single mom it is difficult for me because i feel very alone in my feelings--no other person to lean on our relate to. I also have feelings of resentment toward my child's father because I know nothing of his history on regards to this and feel like he should be worried over our son too. It's also a challenge finding care for my other children with my oldest's testing and what not. I just had a baby 3 weeks ago and am trying my best to keep him close to me. I was already balancing a lot without all these appointments, tests, and medicine to administer to my scared and confused little boy
What I am most concerned about right now is school. Have kids still been able to be successful in school? He has never had to miss school but I'm afraid that may be in our future
He had been having symptoms for a very long while, at least a year but perhaps 2 before we finally got down to some testing that led to his diagnosis. I feel horrible it's been that long. Our primary care doctor brushed his symptoms off as poor diet, and my son never complained. I could just tell he was going to the bathroom a lot and seemed uncomfortable. So we just began seeing a GI APN this summer (on my own referral...doctor suggested he cone for another checkup...negligent jerk!) and got our diagnosis on 8/22 after a biopsy from a colonoscopy. The colonoscopy also showed a fistula, so we will soon be going for an MRI to investigate more and I suppose make a plan for surgery? We won't actually meet his Crohn's doctor for a couple more weeks so we still don't have a treatment plan or anything.
I'm grief stricken at the thought of my child suffering for the rest of his life with this
His name is Cameron and he wants to be a video game designer when he grows up. He has been playing baseball for 2 years and does not yet have a position but prefers second base. He has the greatest circle of friends. He is a big brother to a 3yo sister and newborn brother. He is a very good reader, rather advanced for his age, and also enjoys science. He is a very noble, quiet, and sweet kid and it just hurts to know he will always have this. He copes well with the pain and diarrhea but the testing and meds have been hard on him. He is the kind of kid that gets deathly scared over a blood draw or shot. He was so scared when he was being put to sleep for the colonoscopy. I told him about the MRI coming up but not the surgery. Trying to let him take it one thing at a time. Obviously, I'm hoping he will never experience any complications related to the disease. However, after reading some of you all's posts, I'm thinking i'd be better off ensuring he has the strength, courage, and confidence to overcome whatever challenges he must face.
As a single mom it is difficult for me because i feel very alone in my feelings--no other person to lean on our relate to. I also have feelings of resentment toward my child's father because I know nothing of his history on regards to this and feel like he should be worried over our son too. It's also a challenge finding care for my other children with my oldest's testing and what not. I just had a baby 3 weeks ago and am trying my best to keep him close to me. I was already balancing a lot without all these appointments, tests, and medicine to administer to my scared and confused little boy
What I am most concerned about right now is school. Have kids still been able to be successful in school? He has never had to miss school but I'm afraid that may be in our future
the doctor said he will probably put him on 6mp depending on what labs from today show in regards to inflammation. He also said he thinks the fistula must be small based on his own observations. Just waiting for this MRE we have next week. Not talking about it much with Cameron since it really produces a lot of anxiety for him. But, PP was right--he was much less nervous about his blood draw today. I told him if he could handle the scope, a poke on the arm is nothing! He must have agreed 
I'm a bit more hopeful and optimistic now, although i feel i need a nurse or something when i take him for these appointments and talk with him about it or give him his medicine because mentally and emotionally it's just so tough! I'm also now a bit scared of lymphoma. The doctor said the risk only increases from 2 in 10000 to 4 in 10000 but if you think about it, that's doubling his risk! He said Cameron is much more likely to suffer complications from Crohn's without treatment...but which is worse? Likely the lymphoma 
