My son has just been diagnosed with Crohn's disease--I'm terrified...

He's 10 and had been sufferring terribly with diareah and stomach pain for quite some time, probably a year. Our GP sent us to a allergy doctor who confirmed he had several allergies and we put him on a program of shots etc hoping to rein in the problems. We finally sought out the help of a GI specialist upon a friend's insistance only to have him scoped and confirmed as a Crohn's child. I nearly cried in front of my son and doctor--I had to leave the room. I was so stunned and surprised. We had already had him tested (blood test) by his GP who ruled out Crohn's. To find out he has this disease and will have it the rest of his life just crushed me. We have NO family history of this disease.

The doctor put him on prednisone and 6MP. Within a couple of months he was doing great, but sufferring from embarassing swelling and massive weight gain. And let me tell you, being ten and having a hamster face does not go well at school. My heart just ached for my son. There was nothing I could do for him. The swelling now gone since we've stopped taking the prednisone, he looks normal again. He looks like my son.

I have noticed he was getting fevers from time to time, tired and naseaus. So I did some research, only to uncover the terrible risks that go along with 6MP. A rare and fatal blood disease is directly associated with 6MP, and it has been confirmed to be at a higher rate of occurance than originally thought (according to the Crohn's foundation's website), but still low probability. So, we have cut his dosage in half hoping to at some point get him off completely.

So my question is has anyone who has experienced remission thorugh 6MP, gone off it completely successfully. In the studies I've read, the chance of a flare is increased for those given a placebo vs 6MP. But given my son is young, his risk is very real for some other dreaded fatal blood disease--the younger the patient, the higher the odds of another disease.

I sit here trying to make decisions for my son praying for the strength and courage to make the right decision regarding his future health and risks associated with some of these drugs.

If you can provided any insight or help, I would be eternally grateful.

He appears to have no problems with dairy, so we've ramped-up pro-biotic drinks and kept his diet bland with ocassional splurges.

William~

Thank you.

We are in conversations with his GI doctor now. I will run the Pentasa by him, and do some research on it as well. The blood disease associated with 6MP is incurable, and it is fatal.

What is strange is that my brother's wife has Crohn's, takes no medication since going into remission two years ago, and they have two sons that don't have it, yet. I don't understand. We don't have it in my family.

Thank you, Roni.

The doc says it's a small chance, 1 in 10,000. Well, I've already won the crap lottery having him contracted this disease, and I'm about as bad as you can get when it comes to luck. So I worry he'll pay with his life for my bad choice in meds.

I will work with the doctor, and I will run by him a possilble transition into Pentasa, assuming it does not have the potentially fatal ramifications associated with it.

He's no longer in a flare. He has no pain, no diahrea, seldom is there any blood, only when we challenge him with something in his diet that we didn't know he couldn't have. We put things on the menu, then take them off if there is a reaction. It's working.

Multi-blend probiotic for kids? I'll look for Udo's next time I'm at the store. Tea? Interesting. We will certainly try it.

Thank you for your help--greatly appreciated.

Thank you.

I agree; the steroids are horrible and cause long-term damage, some unseen. Getting off of those was the priority, and now we are just doing 6MP.

I understand some people do not take any inhibitors, like my sister inlaw. She's been in remission for two years with nothing. If there is a way to be off of it, I want it. In fact, I am going to visit her GI doctor with my son to see if he has a plan that may lead him down that same road. I know the disease is unique and ever changing, but I've got to explore the possiblity we can get him off this drug. I am terrified.

I hope you are doing better.

Yeah, she tells me it's her doctor etc, when she probably just lucked out. I can tell you when it was active and it had not been diagnosed yet, it ripped her apart. She looked like she was dying. Thank goodness she's better.

You bring a very important point up, puberty. I can recall when he was born he was in the 99% for seven years or so. Now he's 50%. And of course he's been dealing with Crohn's for almost two years, most undiagnosed.

I could punch that GP that didn't diagnose it, or send us to a GI doctor. It just goes to show you, you are on the hook for everything all the time. Never put your trust in one person regarding anything important.

Why my precious ten year old son? The doctor tells me his chance of randomly getting it was less than one in two million. I can't win the jackpot lotto, just the Crohn's lotto. darn shame.

Thank you. With every post I learn more. I appreciate everyone's help.

One other thing I want to point out: Your research on the side effects of 6MP may have been misleading.
6MP has been used for decades as a cancer treatment - at much, much higher doses than it is used in treating
Crohn's - and much of the info online about potential side effects is based on that higher dose.

So while the potential is still there for serious side effects, they're not as bad as what you often see online.

Hi whelp...I'm so truly sorry that your son is going through this and I cant imagine how you must be feeling as a mother.

My husband has Crohns and the last few years have been extremely bad and finally ended up having a surgery to remove his entire colon after becoming so sick and Ni longer responding to meds. He was diagnosed 18 years ago when he was only 15. He became really sick with diarrhea, tummy aches, abcesess, etc. After being on prednisone at that age, he vowed to never go on pred again...and he never did no matter how bad he was flaring. His mother took him to a holistic place where my hubby started there for a couple weeks. Limited diet, detox, accupuncture and such things. This was when he was 15-16 years old. After that he was in complete remission for about 10 years. Now, hindsight is 20/20...looking back this period of time he was not on any meds and he believes that is what caused his Crohns to become to severe in his mid 20s. When he started flaring again, it came back with a vengeance. We do believe if he was on maintenance drugs, it would have kept his Crohns in check and prevented from getting so bad.

Fast forward...in the last two years, he went from 155 lbs to 106 lbs and his quality of life was 0. We had a daughter 1 1/2 years ago and he missed the first year of her life. He was on Humira and 6mp. He started improving a little but his colon was so inflamed that his GI couldn't get past 15 cm from the bottom during a scope. She said he needed surgery stat and meds at this point were not going to heal him.

On 10/31, he had a total colectomy and he is happy as can be. No pain from his cd in years and he's able to enjoy life and food. He plays with our daughter and I have my husband back. He's back on maintenance meds now even though he has no active Crohns because Crohns can always come back. He will never make that misktake again.

The reason I'm telling you this is not to scare you, but I think you should really think about the consequences of your son not being on any meds. He can have remission for a few years, but he still has a long life to live and the cd can come back. 6mp has long been used for pediatric cancer patients and has a long good track record. Or why not try milder meds such ad Asacol or colazal?

You're a good momma and you'll do what's best for your baby boy. Good luck to you and your family. I'll be thinking about you.

Hi Whelp,
First of all, I'm sorry that your son (and family) are in this situation. I also have Crohns with no family history. I have always been kind of "anit med" too and if I was feeling "good enough" I didn't take anything - for years. Like many, many, others there was unseen damage and I regret it! I am now on remicade (allergic to 6mp and imuran) and I was TERRIFIED of such a "high risk" drug. To be very honest, I am so, so, so incredibly thankful to be on it - I feel 90% better - no diarrhea, no fevers, can eat what I want (knock on wood). Although drugs scared me, the quality of life I feel is so worth it. Instead of the 1% chance of your son getting some rare side effect, it might help to focus on the 80% (or more?) chance that he will actually feel better and have a good quality of life (like he is now on 6mp) - it is no fun being sick day after day. And often, if left untreated, the next flare only gets worse and takes much longer to get under control (in my experience).
With all that said, I recognize what a difficult choice it all is - and everyone needs to take their own journey. I wish you and your son peace as you make decisions.
This link may help you when it comes to drugs, it really helped me!
http://programs.rmei.com/CCFA139VL/start.html

I really wouldn't base your decision on the fact that your sister-in-law has been drug free for 2 years. She could very well have the disease doing damage on the inside that she does not know about. In those cases the person ends up in worse shape when it does rear it's ugly head. Some needing surgery to remove feet of intestines. I'm a very strong believer in maintenance medication to try and keep things in check.

The fact that your son is doing so well on the 6mp, would make me want him to stay on it. Crohn's medication unfortunately do come with a lot of side effects and risks. A lot of them quite small, and unfortunately if we want to control our disease we have to take these risks.

Anyway, my heart goes out to you and your son. I was a teen when I started getting this, and wasn't diagnosed for many years. So I went for years with it untreated. I ended up having surgery for a rectal fistula, and in 2006 I almost bled to death from a very deep ulcer I had from no treatment all those years. That's when they finally diagnosed me. Some 10 years after I started having symptoms. I had no idea what was going on in the inside of me all that time. Just make sure you talk to with doctor about all of this, and don't let the fear of small risks run you away from him getting treated for this disease. It's too serious to just leave it to chance.

Hi Whelp,

My son was (finally) diagnosed two years ago at the age of 16. I think it is fair to say that my reaction was fairly similar to yours.

We tried the antibiotics, enteral nutrition, Steroids.Pentasa all with no joy and then the specialist talked about moving him up the drugs ladder to Azathioprine(immune suppressant like 6mp) I was horrified both at the side effects of the drug and the consequences to my son if nothing was done.

He has now been on this drug for over a year now and he looks so very well :) He is also still on the pentasa, his consultant twice said that he no longer needs to remain on it but twice when trying to come off it he has run into problems so he remains on the two drugs(it appears to be that for him either one of them doesn't work well alone but together really suits him)

Although there is a(very) small risk imho if it allows the sufferer to lead a near normal life then it isn't a bad trade off.

However that said, if that combination stopped working and they wanted him to take something like remicade and azathioprine I think I would fight them all the way!

The other thing you should consider is that from now on your son will be hitting puberty

 and I honestly don't believe it is the time to start changing a medication regime that currently works for him. This is the stage of his life when he needs all his nutrients etc to develop to his full potential because once that time has passed there isn't anything you can do to play catch up(eg if he isn't absorbing all his nutrients he may not experience a 'full' growth spurt)

I think the forum Beave is referring to 'Dragonpack' can be found here http://www.dragonpack.com/ibdsupport/parents/

I have been taking azathioprine (similar to 6mp) for a total of 16 years and the only times I have had a flare where when a doctor prescribed me anti inflammatories for a neck injury - not a good idea with Crohn's and really mucked my system up, and when I stopped the azathioprine following advice from my GI as had been in remission for 7 years. Really, really bad move. I had worst flare I have ever had and went straight back onto the azathioprine and also has to start Humira and pred. It took 5 months off work to get it back under control and I stopped the Humira after 4 months due to developing Lupus from it and came off the pred once the azathioprine was fully in my system which can take up to 3 months.

I would never stop it again and happily take the low risk of side effects and be able to have a life than risk having another flare again. I have already had many surgeries for the Crohn's and have had all colon, rectum and anus removed and major portions of my small bowel as well. However, I still work full time and aside from the problems I have with arthritis and the Lupus stuff am able to live my life as I want.

Your son is now in remission and is well, please think very carefully before reducing or coming off the meds completely. He will need all the nutrition and health he can get to allow his body to mature through puberty. All medication has side effects and sometimes we can easliy scare ourselves by reading all the info available online. If he was my child I would not think twice of leaving him on the 6mp and would rather he be well and enjoy life than have him drug free and risk him having a really bad flare further on in the future.

Hi Whelp,
and welcome to this forum. You will get a lot of advices here, and here's my share:

If you still haven't heard of the Phase II trial with Low Dose Naltrexone, short called: LDN versus IBD (Crohns, Ulcerative Colitis and other inflammatory bowel diseases) you might want to find out what kind of medicine this is.
The naltrexone is giving zero side effects in the long run, the pill is not bigger than 4.5 mg (many with Crohns is ok with 3.0 mg) taken by night. I am not allowed to use any Crohns medicines that is suppressing my immune defency, therefor I use this medicine, helping me as much as remicade or humira, the strongest medicines used for Crohns, the hardest guns. I have had cancer, and these medicines suppressing the immune system may give a rare, and aggressive cancer, children are said to be extra vulnerable.

Many kids are using LDN in combination with milder Crohns medicines. Even adults, of course. If you want to know more on LDN, you need to do a great deal of research yourself, the medicine have been given to other patient groups than Crohns patients for more than 30 years, without any problems, and have been used in doses of 50 mg to 300 mg each day. We who love to take LDN are using from 1.5 mg - 4.5 mg a day.

It's though of great importance that you do a great deal of research yourself, because many doctors don't know this medicine. And many of them says no to prescribe it being afraid of trouble and lawyers.

Anyway; at yahoo there is a group named LDN and IBD, there are parents giving their children LDN, and LDN users giving advice how to do this and how to inform doctors. That group holds very experienced members.

Meantime; go to youtube to see this doctor talking about LDN:
http://www.youtube.com/watch?v=5p5nhzP2OaI
and use this link to print out information to your sons doctor:
www.ldnscience.org
a site owned by two professors that was participating in the phase II trial at Penn State University, Hersey. The leader of the phase II trial is Phd. dr. Jill Smith.

LDN helped me from day one, some need a few months to get gradually better with it. The medicine is not AT ALL risky to take, so why not give it a try, it's a great medicine for a kid too.
I so understand your opinion about dangerous medicines, that's why I suggest your choice avoiding them.

Personally, I want to advice you to use at least a total gluten free diet to your son. Go to youtube and write dr.Hyman as a search word. You will then find this doc learning us about gluten sensitivity, gluten intolerance versus gluten allergy. The latter is celiac.

I know there's more other diets, and some of them let you try out what your son is reacting to. One of them is the so called Paleo. It's worth reading different diet teories and find what suits him (your family?) best. What all diets always says is: avoid grains. Avoid gluten and casein. (gluten from grains and casein from milk).

I am holding a bet that your son is sensitive to a lot of things (may be gluten and casein too, being he has got a few allergies now).

Good luck,
BEEsting )

oh, and this: (a gastroenterlogist and pediatrist)
http://www.youtube.com/watch?v=FtxfV49YYZM&feature=related

Post Edited (BeeSting) : 12/31/2011 2:01:16 PM (GMT-7)