New to Forum - 10 yr old son with Crohn's

I have been reading this forum for a while now and decided to join today. My son (10 yrs old) was diagnosed last year with Crohn's disease (then confined only to large intestine) and earlier this year developed perianal fistulas. Our GI has tried Flagyl, Cipro and Protopic ointment to treat the fistulas, but they are still there and do not seem to be improving. Our GI has recommended that we start my son on Remicade, but we are very reluctant to do so because of the scary, but rare, side effects (particularly the risk of lymphoma given his age). Other than draining, the fistulas do not seem to really bother him, and we would like to try low dose naltrexone to see if it would help. I appreciate all of the many people who have posted here and look forward to maybe finding some information that may help us to make the best decisions that we can for our son.

Hi there, welcome to the forum! Sorry your son has Crohns and although I have not had perianal fistulas I understand they can become very painful. And like your son Remicade is recommended for Crohns it is a risky drug for his age but not everyone gets affected the same with any medication, some here do amazing, and I under stand your concerns I would be too. LDN is supposed to help some but there are two other parents who have joined here recently and one was not doing so well on LDN. I have been told it can take up to 3 months for it to kick in.

There are a few people on it that could give you their experiences. Lots of friendly people here and great support and understanding is here. Glad you joined us, hope to see you around the board!

Awe, I am so sorry to hear about your son. I'm am so happy you are there for him. You are right, there is tons of support hear. My heart goes to you...I hope he finds some healing. Sue

My son is about the same age. Their are some wonderful resources on the CCFA website that assign statistical data to the side effects of remicade in adolescents (maybe it's in a webcast). It's a number that can keep a mother up at night. I wrestled with the same concerns for my own son. We chose Humira and it's been an amazing few months for him.

Good luck to you both.

Some sites that help in the US Zoodles is right CCFA,in Canada CCFC.ca or www.child.ca just some that can help some parents with concerns.

Hi jlbtjb,

As I said to Zoodles, I'm sorry you had to find yourself here but on the plus side this is a great place with loads of support and info so please stay around 'cause it would be fab to have you here. I guess you've already the Remicade Club but if not here is the link...........................

http://www.crohnsforum.com/showthread.php?t=4544

Many of the drugs to treat this disease have frightening side effects and I struggled with the decision to put my daughter on Imuran but the potential benefits far outweighed her perhaps going back to the way she was, which was horrendous to say the least. I wish you all the very best with your decision and will be thinking about you. Good luck and welcome aboard!

Take care,
Dusty

I was diagnosed at 10! Welcome to the forums. Remembering the look on my fathers face as he delivered the news to me reminds me that this is probably pretty tough for you seeing your son like this. There seem to be a lot of veterans here so it should be a good resource.

No prednisone? That's what they started me on the second they diagnosed me. I remember eating 5 arbys swiss melts in 5 minutes.

I was diagnosed at 15. Even though I was still 5 years older than your son is right now, I did start taking the remicade right away. It worked really great for me for a few years.

I am so sorry for your son to have to go through this, but it sounds like he has a great mom for support! Family support is what has gotten me through the last 11 years. I hope you find some answers here that you are looking for, this is a great community!

Thanks for the welcome!

Thanks to everyone for the kind welcome and words of encouragement. Someone asked about prednisone, and his GI did immediately start David on prednisone and Asacol after the diagnosis. The prednisone worked extremely well - no more bloody stools and a 10 lb weight gain in 1 month. He tapered off the prednisone after a month or two and has remained on the Asacol and probiotics (Culturelle and Florastor). He is also taking Flagyl for the fistulas. He has been doing very well except for the fistulas and some recent problems with his appetite. He has not really wanted to eat much lately and has had some problems keeping food down. His GI recently did another endoscopy and colonoscopy to see what the problem is because he has lost a few pounds. The good new is that everything looks pretty good but we still don't really know why his appetite is off. The Asacol is working very well to control the inflammation in the intestines, but the GI wants to try Remicade to heal the fistulas. I would like to try the LDN before going to Remicade because my son is not really having any trouble with the fistulas right now, and I would like to try the least harmful treatments first. I may end up having to go to Remicade, so I appreciate the link to the Remicade Club. Maybe reading some posts there will help set my mind at ease. Thanks again for the welcome, and I pray for all those here suffering from this difficult disease.

It's possible it's the Flagyl causing his appetite loss and vomiting. Found this info on the 'net.

All medicines may cause side effects, but many people have no, or minor, side effects. Check with your doctor if any of these most COMMON side effects persist or become bothersome when using Flagyl:

Appetite loss; constipation; diarrhea; dizziness; headache; metallic taste; nausea; stomach upset; vomiting.

Read more: http://www.drugs.com/sfx/flagyl-side-effects.html#ixzz11bp1TlEu

My doc had me on Flagyl and Cipro for my fistulas, helped for a while, but still have drainage, so he took me off. Long term use of Flagyl is not recommended as it can cause peripheral neuropathy (numbness in the extremeties).

Thanks for the info, rottengut91. I had begun to wonder if it might be the Flagyl causing his symptoms. I plan to ask the GI about this. I hope that his doctor will agree to take him off the Flagyl because he has been on it for a couple of months now and it does not appear to the helping the fistulas at all.

My doc also wants me to go on Remicade. He says it will help heal my fistula. I had a c-scope last week. I've go severely active Crohns in my rectum and also at my anastomosis (previous resection sites, had three so far). I have a small bowel with barium scheduled for the 18th. He wants to see the extent of the narrowing in the small bowel before beginning any new meds. If I have to much, the meds won't work anyway, that section will need to be removed. In the meantime, I'm just taking it day by day. I made it to the grocery store today and managed to put away the refrigerated items, but the cupboard items are still waiting to be put away. I had a particularly stressful week last week, so I'm totally drained this week. I can't get motivated to get things done. Oh well, I've learned, as long as the most important things get accomplished (i.e. the children are fed and the pets are fed) that's all thats really important. The mess can wait until tomorrow.
I have my reservations about starting Remi as well. I absolutely hate taking all these meds and dealing with all of their side effects. I guess maybe that's why I've had to have so many resections. I usually get about two years symptom free post surgery. This time, I think I need to do the Remicade route. My doc assures me they will monitor me closely. I'm getting tired of feeling like I'm 75, especially when I'm only 35. I don't want to ever tell my kids again that I'm too tired to go the park and play. I'm missing too much life.
Sorry for the ramble...good luck with your decision. I know having to decide such things for your child must be extremely difficult.

I am so sorry to hear that your Crohn's is flaring again. Being a mom of 3 myself, I can't imagine how difficult it must be to take care of a family and deal with the fatigue, pain and other symptoms that come with the Crohn's. I will be praying that you feel better soon and that your upcoming tests will go well and give you the information that you need to decide which treatment will be best for you. With my son, it is hard to know what to do because even though the really scary side effects with Remicade are rare, they have occurred most often in adolescent boys. The decision is also difficult because right now, the fistulas aren't really bothering him at all and he is otherwise doing well. I don't know if I should wait and save the Remicade in case he needs to go on it later or if he needs to go on the Remicade now to prevent the fistulas from worsening and requiring surgery. I don't know how the fistulas will progress so it is difficult to know what to do. I will continue to pray and try to gather as much information as I can to help me make the right decision for him. Take care and I hope that you will be feeling better soon.

Hi jlbtjb, welcome!! My son just turned 11!! We've been lucky with 6mp and asacol since his dx late last year but remi has been mentioned as the next course. It all scares the @#$% out of me. Have you discussed LDN with your GI? What did they tell you?

Hi Dexky and thanks for the welcome. I feel scared as well about the possibility of using Remicade for my son. I am very interested in trying LDN because it does not seem to have many side effects, and if it worked we would not have to face the Remicade decision right now. Our GI has contacted Dr. Jill Smith at Penn State who did the clinical trial with LDN to get more information. The GI really wants my son to go on Remicade because it has a good track record in healing fistulas but is willing to try LDN if we want to. My feeling is that if the LDN does not work, at least it will not have harmed my son in the process, and I will know that I have done everything that I could to pursue the least harmful treatments first should I ever have to go to Remicade. Hopefully neither one of our sons will have to have Remicade, and I pray that your son continues to do well.

Hello, I am also new to this forum also and my son is 11 yrs old and has Crohns disease in his large intestines. Tanner was diagnosed at the age of 7 with this disease, his first major symptom was a huge rectal abcess which had to be drained 3 times with surgery. Tanner also gets fistulas and we have tried it all, we have also done remicade(which did help his abcess heal but did not completely close it, it doesn't drain or anything but some of the hole created from surgery is still there). And we did a clinical trial for LDN at Hershey Medical Center unfortunately for Tanner this did not help him and we really hoped it would. I have to tell you everyone is different and just because something didn't work for one person does not mean it will not work for your son. I think I would try the LDN first just because it has little to no side effects. We had no problem with the remicade or Humira, they just did not help enough for Tanner. Tanner goes to Cincinnati Childrens for his disease and they have said he is one of their tougher cases so what normally works just doesn't for him.
I am praying for you and your son, these are tough decisions we have to make as parents and it isn't easy. Hope all goes well.
Marsha Mom of Tanner

Hi jlb
and welcome

So sorry to hear all this about your son, he is so lucky to have a Mum like you tho!
glad you found us, lots of friends here for you
lotsa luv
Joan xxx

Hello tannersmom and I truly appreciate your prayers. I am so sorry that your son has had to endure so much at such a young age and that neither the LDN nor the Remicade has helped. I will keep you both in my prayers, and I hope that the abscess / fistulas will completely heal and that there will be some treatment that will be able to help your son.

Hi Astra101 and thanks for the kind welcome and encouragement. I am so sorry that you have to suffer with this disease. You'll be in my prayers as well. This does seem to be a great site with many wonderful people. It helps to be able to hear from other people who have gone through some of the same experiences as my son and I am grateful for the wealth of information that is here. Take care.

Just want to second the appetite loss theory, I have been using Flagyl for the last 6 months and noted a general 'bla' feeling and loss of appetite after about 3months at 1000mg/day. Never confirmed it except on the internet but see my doc soon. I am continuing because I feel better taking it and reminding myself to eat well. In another post someone mentioned Flagyl gives them the hairy tongue feeling which I definitely have as well but never described it that well that's a good one.