Introduction:
I’m in need of some advice from another mother or father with a child going though the same issues as I am. my son was 5yrs old when he was diagnosed now he is 7yrs old nothing has changed.
My Seven Year Old’s Colitis:
I was wondering if any other parents out there with a child of 7yrs old is going though the same horror story that I am. we tried balasized then predisone. then 6mp now we are on methotriate injections once a week and it’s been 6weeks with little to no change. help any suggestion. Because next is remecade. Any one out there with the same issues please I would love to speak to you are hear if you have any other advice for me. Because after the remecade they want to talk about surgey and i will not put a bag on my 7yr old son. He is being seen at Childrens Hospital of Pittsburgh. plus if anyone is intersted there will be a conferance at the monroville convention center on Oct 6 I think at 8.30am . thank you
written by In Need Mother
submitted in the parents with UC kids section of the site
A mother in need of some advice from another mother or father with a child going though the same issues as I am. my son was 5yrs old when he was diagnosed now he is 7yrs old nothing has changed
I’m so sorry to hear about your son! Its such an awful and unforgiving disease. While I am not a parent, I did have the experience of having bowel problems as a preteen, and later was diagnosed with UC. I would urge you to look into the Specific Carbohydrate Diet — a diet specifically for people with Crohns, UC, etc. Read the testimonials about the diet online. The anecdotal evidence is very difficult to ignore. Yes, no studies have been done about SCD (because none will be paid for), but, as you have unfortunately seen, the meds which studies have ‘shown’ to help don’t do too much. It’s not a quick fix, that’s for sure, but SCD has worked wonders for me and I’ve been on it for less than 5 months (and I’ve been sick for much longer). Good luck to you and your son. I wish him the best of health for the future!
I am a parent and I have colitis myself, so I know how you feel.
If you are looking for treatments/options outside of the medical system, the LEF breakdown is a good place to start:
http://www.lef.org/protocols/gastrointestinal/inflammatory_bowel_disease_01.htm
I would definitely endorse Fish oil, probiotics, tumeric, glutamine and Vit D supplements all should be safe for a 7 year old. Ferment your own yogurt for probiotics if you can.
For diet try SCD and also try FODMAP if SCD does not work. Definitely get rid of inflammation promoting Omega-6 high nut/seed oils in anything you cook for him(stick to olive oil or coconut oil), and remove all refined sugar and processed food from his diet.
Has he been given any enema’s? I found predfoam to be very effective, fast acting and does not carry the side effects of oral steroids.
Also be persistent and consistent, the supplement and diet approaches are fairly gentle and may take time to kick in(I would say give them 1 month). They will work best in combination with standard drugs such as mesalazine. Make sure you take them at the same time and every day. If you have time(doesn’t sound like you do) stage their introduction, and document their effects so you know what is working.
As a last ditch resort if you do not want him to lose his colon look into Helminth(worm) therapy. I have tried various forms, TSO are probably the safest for a youngster. They worked for me, but they are very expensive.
Just read your post and have to say watching your child go through the pain and suffering that comes with UC is HORRIBLE! Last year my daughter was diagnosed with the most severe form of UC at the same time she was hospitalized. Her entire colon was diseased and on the verge of bursting. Complete bowel rest and IV medications for 1 1/2 weeks seemed to stop everything…we discharged her and started her on the “soft” foods that the Drs recommended..overcooked pasta, soups..things like that. She imemediately went back into flare..20 to 30 BIG time bloody BM’s….she was scheduled to have her entire colong removed at 15. On a hunch, since food allerigies run in my family…I removed gluten and dairy from her diet (why not try it..whats the worst that can happen, right?!) To my surprise..everything stopped. In less than 24 hours she went from all that awfulness to nothing…1 normal BM per day…no pain, no blood. Her flex-scope 2 months later showed a perfect colon..pink, no ulcers, no lacerations. I am sharing this story because though her UC is still going to flare from time to time…at least we know what foods NOT to give her to help maintain remission longer and not exaserbate the symptoms when a flare does occur. In the instance of your little boy…wouldn’t make sense to give him milk to wash his medication down if he allergic to it, you know?! Best of luck! I completely understand what you are going through and there is ALWAYS hope!
wow. i’m surprised something so simple got her into remisssion! that’s awesome. i love hearing stories like this. is your daughter still on medication now?