That is so awesome, supportive mom! Love to hear a story like this.
Hi everyone! New to this. I'm not even sure if I'm posting in the right forum? I have a 13 year old daughter who was diagnosed 1year ago with crohns. She was on prednisone entocort and 6 mp. She has not grown at all and is losing weight. She also is becoming more anemic. The dr gave us 2 options. Biologics or enteral therapy. We have chosen to try enteral therapy. Any advice would be helpful! Should we have her just drink the formula or try a nasogastric tube? Any parents with success stories??
We are in our last couple of days of EEN!! My daughter is so excited she can't sleep. This last couple of months with her not being able to eat has been rough! Although she looks so healthy and has SO much more energy! I can't believe the difference in her. I'm struggling with what her partial enteral therapy diet will be. The children's hospital here in Milwaukee Wisconsin has no experience with a child completing EEN. The dietician gave me a diet for kids that have bloating and gas. I decided after researching that we would start the IBD-aid diet. Makes much more sense. What are your plans after you complete the EEN?Hi jenni,
My son is now half way through EEN and is drinking his no problem. The first week was tough but has gotten better as we have gone along.
We have had lots of changes to the family to make the treatment easier for my boy. I have been doing meal replacement shakes, my other son and husband have eaten out a lot. None of his favourite meals have been cooked for the last four weeks!
We had a family holiday and managed that ok.
Apparently the last week can be tough, like the first but difficult to stay motivated to finish off.
Liz
Thank you CDJ & pdxHi, Tonian, welcome to the group. My son is 14. He was diagnosed at 8 with crohns. I understand the flaring, exhaustion etc. Josh has been through a lot over the past couple of years, and missing a lot of school due to this. He started on Infliximab this year. He is due his 5th infusion in two weeks time. It has worked really well for him. He has finally started puberty and grown 4 " since he started it.
Hope it works as well for your son.
Can you tell me what you are doing for the partial enteral therapy???Welcome!!
Ds was dx at age 7
Placed on remicade at age 8
And is now on humira plus Mtx plus partial enteral nutrition crohns exclusive diet at age 11.
Hello. New to the forum. My 15 year old son was diagnosed with Crohns earlier this year. He responded well to the initial Prednisone treatment and subsequently went on Methotrexate and it seemed to be helping.
It is no longer working and his doctor is talking about going on Remicade. When I read all of the FDA warnings about Remicade (Infliximab) it really worries me. Specifically the warnings about young boys being especially susceptible to Lymphoma while using Infliximab.
Almost feels like we are going out of the pan and into the fire...
Have any here experienced any terrible reactions (as described by the FDA) to treatment using Remicade?
I've read quite a few posts in this forum and I haven't seen much discussion about Cannabis Oil. Anyone have any experience, good or bad, with it?
She's just on Prednisone right now. We are suppose to get some biopsy results back this week and then we will discuss long term treatment.The gut takes weeks to heal
Typically 6-8 weeks to heal depending on damage so the fact she is improving in 4 days is great .
She is on remicade right .
Typically the goal will be to have normal bm and normal energy level and growth
Just takes time to get there think months not days or weeks
I am in the middle of this with my daughter as well. We will homeschool this year, but I know it isn't the ideal answer. I wish I had a perfect answer for you.I'm grateful for this site and have found wonderful support on it. Navigating the world of IBD diagnosis, symptoms and treatment is so difficult!
I'm looking for other parents who have had challenges with their kids and school. I know that many kids and their parents are on the same page of going to school no matter how they feel, but our situation is extra complicated due to some mental health issues.
When she feels well, my daughter wants to go to school and does pretty well academically and socially. But, when she doesn't feel well - she is not yet in remission and we are still figuring out the right combination of meds - she wants to be in bed. Therapy - to address how to go to school when not feeling well - hasn't worked (nor has any variation on encouragement, incentives or negative consequences).
She missed 80 days of 10th grade and despite that came out with a B average in 3 classes, doing a lot of the work on her own. She is making up one class this summer (which is a nightmare but that is a different story).
We have a 504 plan which protects her and gives her extra time but I just don't know what to do if she is still flaring going into the school year. 11th grade is demanding and important.
My first priority is her health - physical and mental - and getting her into remission. Next, I would like to see her excel as much as she is able. She very much wants to go to college.
I've suggested cyber school to her but am not sure this is the best option for many reasons.
Has anyone else dealt with this situation?
Thank you.
Your doctor can prescribe oral or topical medicines that are effective for that. Sichuan orally or nystatin topically.They are talking about Humira or methotrexate, once the abscess is healed.
So I have a question: DS is on Cipro and Flagyl, now has informed me he has a yeast thing going on in the private area.
He just got his abscess drained yesterday, and a drain put in, to be removed in two weeks. He's supposed to do sitz baths three times a day.
I'm scared of yeast getting into the wound. I have sent a message to his GI physician. He's already on probiotics. Any other advice for this?
My son was seeing a clinical nutritionist and he recommended GutPro. My son took it for a while and it didn't make much of a difference. The nutritionist has Crohn's himself and is very adamant about inactive ingredients in a lot of these pills. There are a lot of products that have ingredients that will cause a flare.Ok, I have another question: we have been using a probiotic, just the CVS house brand once a day. Do any of you have suggestions for good brands of probiotic? I'm thinking maybe we should try something different, in light of this yeast thing. Which by the way, has now started in his mouth and we are going to see his primary in a couple hours.
I'm sorry to hear about your son's diagnosis, but I know exactly what you mean about it being a relief to finally be able to begin treatment. I hope the Modulen diet works well for your son; my daughter had very good results with EEN--it relieved her stomach cramps and diarrhea in a matter of days, and she gained back a lot of much-needed weight. In her case, it took almost 6 months for her maintenance medicines to start working well, so we were grateful for the healing and relief provided by EEN in the meantime.Hello. I am mum to Joe who is 13 and has just been diagnosed with Crohn's after being unwell for the past 10 weeks. He's just come out of hospital and has begun a Modulen diet. He has lost a lot of weight, has inflammation on his shins and swollen ankle joints, mouth ulcers, stomach cramps and diarrhoea. It was a shock to find out it is Crohn's, but also a relief that he has now begun treatment to get it under control. Pleased to have found a place to get support, understanding and advice from other parents who have been through the same.
Has your daughter's doctor done enough testing to rule out an IBD flare? So sorry that she's still dealing with all these symptoms.My daughter is finally in remission from symptoms, now on remicade and Methotrexate. However, she complains of belly pain every day, fatigue and some nausea. Her GI doc thinks it is IBS on top of the IBD. :-( We are trying Elevil at night; not sure this is working - it can take a few weeks to kick in. Also, she prescribed Bentyl but we haven't used it much. It's an anti-spasmodic also for iBS - but it doesn't seem like she has spasms; I'm not sure.
It's also challenging as there are emotional issues and it's nearly impossible to figure out what is what at this point!
K