- Joined
- Dec 4, 2011
- Messages
- 312
Been reading the forum for months trying to understand what having Crohns means for my son, H, and what we can do to help. I am very grateful for all the information, advice of this supportive group. We were thrown for a loop when the doctor gave us the news. Had heard of Crohns but did not really know much about it.
H and his identical twin, N, have been very active healthy boys even from the start. They were 7 1/2 lbs and 6 1/2 lbs at birth. We started to notice late this summer that H was looking a little smaller than N. He ate less so we thought that may be part of it. H also used the bathroom more. He did not complain of feeling bad We had an annual well child visit scheduled soon so we figured we would bring it up then.
At the well visit on a Monday morning, his doctor asked questions about his stools, pain, etc We had not realized how often he was going or how it was often diarrhea. She referred him to the childrens hospital pediatric gastro clinic who called that afternoon and said they had a cancellation the next day. Tuesday, met with gastro ped who asked more questions and ordered blood tests. Wednesday , gi clinic called and wanted to schedule endoscopy and colonscopy for the following week based on inflamation markers, ESR and CRP. Following Thursday, they did the scopes and handed us the pictures and a binder about Crohns based on what they saw. Dr thought it looked moderate, pathology indicated mild. Alot to take in less than two weeks.
H has been a trooper thru it all although he gets down now and then and wants to know why him. We hate crohns. I hate how it gets him down sometimes, He is not a fan of pills or blood draws, but then again who is. The clinic has a psychologist that met with us for the first and second visit after the diagnosis that helped him a lot by encouraging him to imagine and talk about a favorite place or event while getting him blood drawn, says your mind can only focus on one thing at a time so focus on something good rather than the needle.
He was on prednisone for 6 or 7 weeks with prilosec and was started on azathiprine at the same time. He has responded well to both. He gained 10 lbs while on the pred and has maintained that weight. He had a 3 month followup this week and he grew 6/10 of an inch since last time. ESR is still slightly elevated but CRP is good. Did not feel good about the azathiprine, especially since you are supposed to wash everything it comes in contact with. Kinda scary...
I asked the gi about LDN, and he had not heard about it Said they were doing study at UPenn and he said CHOP and Boston were two locations that were doing lots of research. Think I will print out the paperwork for the next visit. My husbands cousin is a pediatrician and we called her after the diagnosis to ask questions. One of her collegues mentioned LDN as well. We also added fish oil, probiotics and vitamin d on her suggestion. We give N the supplements as well. The both really like the vitamin d/calcium/magnesium liquid supplement, tastes like a creamsicle, open their mouths like baby birds for their spoonfull. Hoping N will miss getting this, docs said odds are higher since he is identical.
After reading a lot of the posts here, I am trying to get to the place that I appreciate that things are going relatively ok now as things can turn quickly. My heart goes out to those that are dealing with the things that are not going well right now. This disease stinks.
H and his identical twin, N, have been very active healthy boys even from the start. They were 7 1/2 lbs and 6 1/2 lbs at birth. We started to notice late this summer that H was looking a little smaller than N. He ate less so we thought that may be part of it. H also used the bathroom more. He did not complain of feeling bad We had an annual well child visit scheduled soon so we figured we would bring it up then.
At the well visit on a Monday morning, his doctor asked questions about his stools, pain, etc We had not realized how often he was going or how it was often diarrhea. She referred him to the childrens hospital pediatric gastro clinic who called that afternoon and said they had a cancellation the next day. Tuesday, met with gastro ped who asked more questions and ordered blood tests. Wednesday , gi clinic called and wanted to schedule endoscopy and colonscopy for the following week based on inflamation markers, ESR and CRP. Following Thursday, they did the scopes and handed us the pictures and a binder about Crohns based on what they saw. Dr thought it looked moderate, pathology indicated mild. Alot to take in less than two weeks.
H has been a trooper thru it all although he gets down now and then and wants to know why him. We hate crohns. I hate how it gets him down sometimes, He is not a fan of pills or blood draws, but then again who is. The clinic has a psychologist that met with us for the first and second visit after the diagnosis that helped him a lot by encouraging him to imagine and talk about a favorite place or event while getting him blood drawn, says your mind can only focus on one thing at a time so focus on something good rather than the needle.
He was on prednisone for 6 or 7 weeks with prilosec and was started on azathiprine at the same time. He has responded well to both. He gained 10 lbs while on the pred and has maintained that weight. He had a 3 month followup this week and he grew 6/10 of an inch since last time. ESR is still slightly elevated but CRP is good. Did not feel good about the azathiprine, especially since you are supposed to wash everything it comes in contact with. Kinda scary...
I asked the gi about LDN, and he had not heard about it Said they were doing study at UPenn and he said CHOP and Boston were two locations that were doing lots of research. Think I will print out the paperwork for the next visit. My husbands cousin is a pediatrician and we called her after the diagnosis to ask questions. One of her collegues mentioned LDN as well. We also added fish oil, probiotics and vitamin d on her suggestion. We give N the supplements as well. The both really like the vitamin d/calcium/magnesium liquid supplement, tastes like a creamsicle, open their mouths like baby birds for their spoonfull. Hoping N will miss getting this, docs said odds are higher since he is identical.
After reading a lot of the posts here, I am trying to get to the place that I appreciate that things are going relatively ok now as things can turn quickly. My heart goes out to those that are dealing with the things that are not going well right now. This disease stinks.
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, and I well understand your concerns about the medications as does everyone here. For some the milder drugs work wonderfully well but for others they don't, it really is no different to everyone with this disease, highly individual. You sound like you have solid grip on Hunter's situation and treatment Mum and I think at this point it would be useful to read through the following forums...Enteral Nutrition, Diet and LDN...you probably have already. Both of my children are in remission but I still find myself continuing to read, read and read some more and spirit away that information for future reference. 
