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Crohn's Disease Forum » Parents of Kids with IBD » Our Child Diagnosed; What's next...


07-03-2010, 11:12 AM   #1
here4ourkids
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Our Child Diagnosed; What's next...

Hello everyone, my son of 11 years was diagnosed with Crohns 06/23/2010 after having an Endoscopy and a Colonoscopy.

He is presently on two antibiotics: Ciprofloxacin and Metronidazole, for two weeks.

We received a call this past week that his Doctor of the Pediatrics Gastro Children's Hospital, they called in a prescription for Imuran. After calling our pharmicist to discuss this drug, we have chosen not to pick it up and to start him on it. We go back on the 14th to the Children's Hospital.

The Doctor had not even discussed with us this drug yet, let alone prescribing before we even know anything about it.

Signed,

Here to educate ourselves 4ourkids.
07-03-2010, 11:34 AM   #2
Jennifer
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I would either contact of leave a message for you GI to contact you and let them know that you didn't pick up the drug because it was not discussed. Then they can tell you why they feel the drug is needed. As far as I'm aware its used to suppress the immune system which would make sense for crohns patients as our immune system is overactive. Although I've never taken the drug before myself, what if its something that could make your son feel better? I'd still contact the GI, otherwise they are going to think that your son has been taking the drug this whole time.

When I was around your son's age I had a really nice GI at a children's hospital in Stanford CA. I don't know if he discussed everything with my parents and only discussed a little of it with me cause I was too busy trying to make him laugh cause I was a little goofball back then. I do know that my mom was able to get a hold of him whenever she wanted by calling his direct line to his office and by selecting the "urgent" option when leaving a message. He always called back. Maybe you can do the same with yours.

I'm sorry you all have to go through this. Welcome to the forum.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
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Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
07-03-2010, 11:58 AM   #3
here4ourkids
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Although I've never taken the drug before myself, what if its something that could make your son feel better? I'd still contact the GI, otherwise they are going to think that your son has been taking the drug this whole time.

I'm sorry you all have to go through this. Welcome to the forum.
Thank you for the welcome to the forum. We absolutely want what is best for our son, but after learning the severity that can occur (not saying it will) with this drug we have chosen not to, at least until our return visit.

When the nurse called to inform us of the prescription, of this drug we have never heard of, and my wife asked of the side effects - she was told we should not concern ourselves with that right now.

We too, have our eldest son that was Diagnosed with Crohns when he was 18; he is now 29. He has never been on anything more than a proper diet, some antibiotics, and sulphur pills. Unfortunately, he was diagnosed at almost an adult and therefore has been his own advocate.

We are not opposed to traditional medicine, but too want to see what can be managed with nutrition, holistics, and medicine. We are also thinking of getting a second opinion, regarding treatment options.

Regards.

Last edited by here4ourkids; 07-03-2010 at 12:16 PM.
07-03-2010, 12:13 PM   #4
Crohn's 35
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Welcome to the forum 4our kids! Wow, you have both children with Crohns, there must or could be a distant relative with IBD to pass on gene to hit both boys. Sorry you have to go throught it. I am not sure what country you are from, and if it is the US you have more choices to either go holistic or medicinal. Here in Canada, medical doctors don't take kind to us doing both.

AS you can see both boys are different in the severity of the disease, just like everyone else no two are the same. I was on Imuran and tried many time but had liver problems, however there are many here who do amazing.

I am on Cipro and Flagyl but not together as I have been on and off both, andI have tried all the biologistic available, nothing works, I even tried holistic. My Gi says I am a tough case and have had Crohn's a long time.

I under stand since your son is very young and until there is a cure, he will need something to stop his crohn's from attacking his body. Lots of time probiotics in high doses do help.

Welcome aboard. As Crabby says, his doctor should be notified what drugs... and natural stuff he is on. Other wise reactions can occur. No one likes to be on drugs and going the strict diet way is tough and is not a do all cure.
07-03-2010, 05:24 PM   #5
DustyKat
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Hi and welcome 4ourkids,

I agree with the advice Crabby and Jett and given.

I can't really offer up anything further other than perhaps a bit of reassurance.

My daughter has been on Imuran for the past 4 years and started taking it when she was 14. Our decision was based on different circumstances to yours. Roo did not receive her diagnosis until she was on the operating table which necessitated 60cm of bowel being removed. She was so sick at the time that we were within 24 hours of loosing her and needless to say that emotionally I was a wreck. As a result of the operation she immediately went into remission.

It has been mentioned many times on this board that the more recent approach to treating Crohn's is to try and limit the damage straight up rather than wait till you reach a low and then try to repair the damage. This has certainly the been the approach of my daughters GI. His idea is to try and keep her in remission as long as possible and so far so good. For me the decision for her to go on an immunosuppressant drug wasn't difficult as the thought of her ever ending up like that again was too much to bear. Let me add here that I am in no way suggesting this is what will happen to your son, the fact that he is diagnosed would negate that scenario. As a parent I understand your reluctance, particularly when it hasn't been discussed. I am still at odds with the fact that my daughter at 14, and now, is taking more medication than I have in my entire life, but she has a medical condition that needs to be treated just like any other.

As I said it has now been 4 years and Roo continues to have her blood tests and as far as I know has no noticeable side effects from the drug. In her case the surgery and the Imuran has allowed her lead a relatively normal life. She is currently living away at university. So at the end of the day it does have positive effects in some peoples lives.

All the best,
Dusty
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07-03-2010, 05:41 PM   #6
kello82
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hi there! and welcome =]

i was diagnosed at 9, like so many others on here who were diagnosed as kids. hopefully youll find some great help and info here to help your kids thru it all! as well as support for yourselves.

can i ask what area you live in? maybe we can help you with some reccomendations for second opinions.
i was at the Childrens Hosp of Philly for many years and i LOVED it. started out as a second opinion and then we made them my primary docs, they are wonderful there. if you are close and interested i can give you their names.
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little girl, you're in the middle of the ride.
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07-03-2010, 06:22 PM   #7
Nyx
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I wasn't diagnosed as a child, nor do I know any children with Crohns, so I can only tell you of my own experience. When I was first diagnosed at 36, I was offered Imuran right away. I chose Pentasa instead because it was a milder drug, and had less scary side effects. Three years later I wound up having an emergency colostomy because my Crohns was very aggressive. I often wonder now that if I had taken the drug when it was first offered if I could have avoided my current situation. Don't get me wrong, I'm glad I have a stoma now, but I still wonder. I'm sure your doctor didn't prescribe the medication for no reason. For sure, get a second opinion, but don't discount this one either.

Just my two cents. Welcome to the forum, and good luck to you all
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07-03-2010, 07:01 PM   #8
Dexky
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Hi 4ourkids, EJ was dxed at ten and was put on pred to knock the crohn's into remission then prescribed 6mp (mercaptopurine) which we too were reluctant to start due to the long list of possible side effects. However, when we pushed our GI on this, he showed us that during EJ's bloodwork, they had tested to see if his system would metabolize the 6mp well and it does. We've had no ill effects from the 6mp and his bloodwork last week was all clear. I don't know if such a test exists for Imuran but it might be worth asking.

I'm with the others, a second opinion is always advisable, but getting on top of the disease early could have positive results for him later. I don't fault you for your skepticism though. Like Dusty said, I've never had to take anything more serious than an aspirin in my life. It's hard to watch my son have to take potentially dangerous drugs everyday, but it was much harder to watch him go through the symptoms that led to his diagnosis. Ultimately, it's your decision and there's nothing wrong with making it from the most informed position possible. Good luck to you all and welcome to the forum.
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07-03-2010, 08:42 PM   #9
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you sound like a great parent. keep pushing for information and explanations. i just started the generic version of the drug on friday, and i had to press my doctor for information. i would me clueless had i not done research. no one should ever just be prescribed something with the expectation that they will just take it (or give it to their CHILD!!) on blind faith, dont you think?! golly!
07-04-2010, 03:06 AM   #10
Rebecca85
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I think there is a blood test like that for imuran. I am due to start on azathioprine (same stuff as imuran) but I am going on holiday so my doc says wait till I get back because I will need weekly blood tests to make sure I am doing Ok on it.
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07-04-2010, 07:49 AM   #11
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yep, i had labs before I started the med and will continue to have them every two weeks for a while.
07-04-2010, 12:59 PM   #12
here4ourkids
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Thank you everyone for chiming in. I have been learning a lot this weekend and my wife and I have been having lengthy conversations with all of this. After, reading a lot and hearing from you all we are reconsidering our initial views of the Imuran, but have also acquired Elaine Gottschall's book.

We have gotten the Specific Carbohydrate Diet and the Healing Foods: Cooking for Celiacs, Colitis, Crohn's & IBS with over 200 SCD Recipes. We are headed shortly to the grocery store, to begin our new journey.

Thank you again for your warm welcome, and we look forward to many more of your stories. We want our son to know he is not alone. Right now he is upset with the "kids shouldn't have to deal with this", "I'm not eating that", "I'm not changing the way I eat", and of course "this is not fair".

He is eleven and this is a lot for him to take on...It has only been about a week and a half.

Respectfully.

Last edited by here4ourkids; 07-04-2010 at 01:12 PM.
07-04-2010, 01:10 PM   #13
Keona
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Wow... I have to say Kudos to those with children diagnosed or those diagnosed as children. Being a parent is difficult alone without a child who is ill. Difficult b/c they cant understand the language or what is going on. It is difficult being a child these days alone without the added extra burdens thrown at them...especially during their developmental years. I bet these children develop exceptional coping skills i.e: E.j's cartoons. I'm just amazed and cant comprehend how difficult having a child with IBD would be. Again, Kudo's to the parents on here.
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07-06-2010, 02:03 PM   #14
themuse
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Hi 4ourkids,

I am currently on imuran, and get regular blood test to make sure my white blood count does not get dangerously low. I've been called a few times by my doc to inform me to stop taking it because he got the blood work back. I am now at a stable dosage, but still get regular blood work as precaution.

I was diagnosed on the operating table at age 19, when I probably should have been diagnosed at age 12. I went to doctor after doctor and was told nothing was wrong with me, except lactose intolerance.

So please make sure you get blood work done every week especially in the beginning. Once things are stable then your son would probably be moved to monthly.

I wish him all the best!
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