Teen son (just diagnosed) and husband (living with Crohn's for 40 years)

[Crohnsx2]

Hi, I just wanted to introduce myself. I'm a mother of a 16 year old boy that was just diagnosed with Crohn's. My husband has had Crohn's since he was about 7 yrs old, and he's now 47. My husband had surgery to remove four feet of his small intestine and part of his ileum when he was 8 yrs old. He's been on sulfasalazine, asacol and now he takes Apriso. He has controled it very well. My son, on the other hand, has just been diagnosed and his Crohn's is in the very end of his small intestine, ileum and a large part of his colon. The doctor says that my son's Crohn's is more severe and he doesn't think Apriso will even help him. We were told that the drug of choice for his severity of Crohn's is either 6MP or Remicade. I feel this is too harsh of a treatment for my son, and I was wondering what other peoples doctors have told them. I feel there are way too many side-effects and I am very reluctant to try these as the first option for his treatment.

 

[Clash]

Although I am sorry you had to seek this forum out, welcome. In general, children often times have a more aggressive form of crohn's. A lot of ped GIs opt for the top down approach, hitting the cd hard with the strongest meds. My son will be 16 this year his cd is located in his terminal ileum and he is on Remicade. I would suggest you research treatments on this site as well as other credible sites and write down all of your questions and concerns. Then go over them with your son and his GI. I'm sure someone will be along shortly with info relating to the absolute risk percentages, links to studies and treatment discussions on this site. I hope you are able to find a med that works well for your son. My son has done wonderful on Remicade and the relief was immediate in symptoms and blood work results.

 

[Tesscorm]

Welcome to the forum!

Sorry your son is having a tougher time controlling his crohns! It is so difficult accepting that our children need these meds But, hopefully, you will be able to find something that will bring him some relief soon.

You may want to look into Enteral Nutrition. EN is commonly used everywhere as a first-line treatment for children. For some reason, it isn't used nearly as often in the U.S.??? EN has a comparable success rate at inducing remission as steroids, provide all necessary nutrition and bowel rest, has anti-inflammatory and healing properties and has NO side effects! My son was diagnosed last year, at 16 years old, and this was the treatment offered to us by our hospital. It did take him into remission and he has continued with EN as a maintenance treatment (although it is not as successful at maintaining remission as medications).

It does mean that you must replace all foods with the EN formula, usually for approx. 6 weeks, after that period, food is reintroduced. The formula can either be ingested orally (shakes) or through naso-gastric tube (as my son does).

My son had lost approx. 25 lbs prior to being diagnosed, within 3 months, he had gained 30 lbs. His only treatments have been 1 week on IV Flagyl (when diagnosed) and then, while still in the hospital, began EN. All of his symptoms were gone within a week (Flagyl probably brought on the initial reduction of symptoms??), he was back at school within two weeks and back at regular activities (2+ hours of phys.ed. plus hockey) within 3 weeks (although, after being sick for a number of months, it took a while for his 'strength' to rebuild but his 'energy' was back).

I can't say enough about how great this treatment has been for my son and my own peace of mind. Unfortunately, we may be looking at adding meds soon as there have been some indications the inflammation is returning but, for now, he is pretty much symptom free. I encourage you to look into this.

I have added three links, one to a thread providing additional info re EN, another to a thread entitled 'Children on EN' and the last to the Enteral Nutrition subforum (found under Treatments).

http://www.crohnsforum.com/showthread.php?t=39758
http://www.crohnsforum.com/showthread.php?t=36345http://www.crohnsforum.com/forumdisplay.php?f=161

Please also have a look through the Parents of kids w/IBD - you'll find lots of knowledgeable and supportive parents who all understand your concerns. They are a wonderful group and are always happy to share their experiences - please don't hesitate to ask any questions!

Good luck! :ghug:

 

[David]

Hi there and welcome I'm glad your husband's disease is well controlled but am so sorry to hear about your son. That's heart breaking

Tesscorm above said so much of what I wanted to say. In addition, I would suggest researching low dose naltrexone as well as the paleo diet and specific carbohydrate diet.

If it comes down to him needing Remicade or 6-MP, they're definitely fantastic drugs and do what they do very well. Sometimes they are indeed needed and usually do the trick.

I wish you and your family all the best.

 

[Crohnsx2]

Thank you all your kind responses. We went for a second opinion today and the doctor said that his first treatment for my son would be Asacol 2 times a day, taper off the prednisone, keep taking the flagyl and eventually taper off the flagyl. If symptoms came active then he would try Rifaximin as an antibiotic instead of flagyl. He also suggested a multivitamin and VSL#3 probiotics and an Omega 3 suppliment. We are waiting until we come back from a well deserved mini vacation in the Bahamas. I will keep you informed of his progress ... fingers crossed.

 

[DustyKat]

Hi Crohnsx2 and :welcome:

I'm so very sorry to hear about your son...:hug: It is good to hear though that your husband has been able to keep his Crohn's in check all these years.

Tess has given you wonderful advice about EN and David's suggestions are fab too. :thumleft:

Clash is also spot on regarding treatments now days and many doctors going with the top down approach. It is good to hear that you have been given alternative treatments. I think that perhaps your husband's disease was severe when he was operated on at 8 and that likely put him into remission. From that point with controlled and monitored treatment his disease has thankfully never extended much beyond mild to moderate which is why he has been able to keep it in check. 39 years on and at 8 years old, complications aside, your husband parents would likely be facing the same treatment options you are now.

I hope you have a wonderful break that is no doubt well deserved!

Good luck, i hope your boy responds well to the treatment and he finds lasting peace and relief.

Dusty. xxx

 

[michaelearnest]

Sorry to hear about your son, but on the positive side having Dad there as the expert will be very helpful. Sending hugs your way!