Crohn's and meds

Hi, I am new to this forum. My son was recently diagnosed with Crohn's. He lost 25 lbs., had swollen joints, and had ulcers from his mouth throughout his intestines. After being hospitalized for a week, we were sent home on predizone, flagyl, and pepcid. He seems to be doing much better for now. The doctor recommended remicade. I strongly do not want to put any more drugs into his body than necessary. He is only 12.

Five years ago, he got very sick with the same symptoms. After doing research to try to figure out what was wrong with him, I was almost certain it was Crohn's. At his dental exam at the time, he was found to have 2 cavities. When they were filled, his symptoms disappeared. He was fine for the next 5 years, until this recent "flare up". Right before his hospitalization, he was at the dentist for his 6 mo exam, and again, has 2 cavities. My question is could this perhaps have triggered a flare? And, if he got better 5 years ago without meds, does he really need them now?

I am at a loss. I am hoping in my heart that after he is weaned off the predizone, he will be okay without meds. I would prefer he follow a natural route, as he has never even taken an antibiotic in his life until now. Due to an allergic reaction his sister had to vaccinations, he is not vaccinated, which I heard could be a problem with all of the meds recommended. I don't want him to suffer like he has these past few months again if that can be helped.

Please help me!!

I am so sorry you and your son are going through this! I can definitely understand you reluctance to add more medications. I really have no insight as to whether the cavities have any impact on his flare, but I am inclined to think not. Crohn's can affect the mouth which may cause cavities, but I don't think cavities would cause a Crohn's flare.

If it were my son, I would try a radical diet change and see how that works before starting him on Remicade (but that's just my advice from one mother to another). Check out the Specific Carbohydrate Diet (SCD) and see what you think. I'm not saying to stop the current medications your son is on, but look it up and see if it may be able to work with his current medical regime. Ask his doctor what he thinks about trying a diet change while weaning off the prednisone and then reassess the need for biologics.

Many younger children will also do TPN or bowel rest to gain remission, but at 12 I think this would be very hard for your son (poor guy).

And in the end, Remicade IS very successful for many people. Just know you have options. I hope he continues to get better and better! GOOD LUCK!

Hi! Thanks for all of your posts. He did not take antibiotics with the first cavities, he has never been on any medication until now. I did buy the book "Breaking the Vicious Cycle".I also bought a few more with some recipes, as he loves to cook!

Myrne: What is Cimzia? Also, another parent told me recently that once you start Remicade, you have to stay on it...looks like that wasn't true for you. I'm not really sure how it works.

Crohnie too: How did you go into remission?

Thanks!

Thanks for your post. I am glad you are doing well now! Is there a reason why you switched meds?

my daughter was diagnosed at 11. she will be 15 this December. she was 5' and had dropped to 71 lbs that summer. she looked like she had stepped out of a concentration camp. just bone and muscle. she was always tired and had some bleeding. after doing my internet research, like you, I was pretty sure she had crohns. it took the docs a few months to get the tests done and agree with me. I was frustrated with their timetable. if she were a docs kid, she would have had everything done immediately.

she was put on pentasa, flagyl and a slew of vitamins and minerals. she slowly started to gain weight. she did not get any taller for 2 years. this was okay with her since she was a head taller than many of the boys and all of the girls. I am told this is common and they might not grow until their weight comes up and they are healthy. now she is 5'7" and 130.

twice we tried to wean her off the flagyl but her inflammatory markers went up. long term antibiotics scare me but I see no other option.

she is symptom free and her bloodwork is good except she still showed ulcers on her last scope. she has never had ulcers in her mouth. doc is putting her on 6MP next week. I actually found this site researching that. hoping she is one of the lucky ones that doesn't have any side affects. she is an athlete and the crohns interfers. it is obvious when she is feeling fatigued.

I understand your not wanting to medicate your son. I am pretty anti-meds. I rarely take anything for pain and delivered two kids without drugs. also have a 6 year old son I am trying very hard not to medicate for ADHD. so many drugs are so new and their long term effects are unknown.

"And, if he got better 5 years ago without meds, does he really need them now?" 

I am sad to say that you might have just been lucky, his disease was so mild or his disease might have progressed since then. I've  heard of so many kids that are diagnosed around 11-13 years old.

agree this is a tough disease for kids. only 2 of my daughters friends at school know she has crohns. a third knows but only because she has crohns and that came up in a friend's mom's conversation. you should look into Camp Oasis for your son. my daughter loves it. actually just got back today. I wanted her to see that there are many other kids out there like her. it makes her realize she is not alone. she also sees kids that are in different stages of the disease. my daughter can be a rebel and I think it is important that she sees where this disease can go if she does not take her meds and take care of herself.

another thing I have noticed is that she is one of the few athletes among her Camp Oasis friends. I credit her being pretty fit to how well she has done with the disease. she seems to have less issues when she is most active. eating well is also very important.

good luck to your son!!