Newbie here

[Mom2oneboy]

My 10 year old son has been diagnosed with Crohn's. He has always been very healthy so this has come as quite a shock. This past December he had a perianal abscess which had to be drained. It appeared to heal and all was right with the world again until the end of January and he started feeling sore in that area again. Just to the right of the prior abscess a sore formed and started draining on its own. This took us to a GI doc who did a colonscopy and endoscopy. The results were he as Crohn's in his Terminal Ileum.

His iron and protein are slightly low but other than that he doesn't present a lot of the typical symptoms. No diarrhea, no blood in the stool, very active with no weight loss although he is on the thin side. He does have some stomach pain on the right side but usually refers to it as feeling itchy. He had his annual Ped visit in Sept. and his iron was fine so the doc is thinking we found this early.

The Doctor has put him on Entocort, Flagyl, multivitamin, and an iron pill. He is recommending Aza and did bloodwork last week to see if he is a candidate for it. We also have a small bowel follow through scheduled next Monday.

After reading about AZA it scares me to death thinking about a 10 year old male taking this!! I just can't wrap my head around the potential of lymphoma. I see lots of people on this site who take it and I wonder how you get past the fear of deadly lymphoma or other potential cancers in the future?

I feel fortunate to have found this site. It seems like there are so many wonderful and caring people here. At this point I feel like I'm swimming in information but thirsting for knowledge! I look forward to learning from you who are the real experts in this disease!

Shelley

 

[Catherine]

Hi Shelly

Welcome, we are new to this too. 16 year old girl dx in January 2012. My daughter didnot have typical symptoms until early November 2011. My daughter was swimming ten sessions weeks in early last October.

Still no diarrhea or no blood in the stool.

Sarah's GI believes she may have had crohn's for up 3 years prior to dx.

 

[David]

Hi Shelley and welcome! I can't imagine what you're going through, it must be so overwhelming A few things:

1. I would suggest checking our our parents of kid's with IBD forum. There are many parents in the exact same predicament as you and the support there is amazing.

2. If he has active disease in his terminal ileum, I would suggest getting his vitamin B12 levels tested. Vitamin B12 is absorbed in the terminal ileum and people with Crohn's Disease are commonly deficient which is bad news. A multivitamin will NOT correct this. I'd also suggest getting his folate and vitamin D checked as well for good measure.

3. We also have an Imuran forum here so you can educate yourself on that.

4. I'm also going to suggest you read up on enteral nutrition. In pediatric populations, it has the same remission rates as steroids without the side effects.

All my best to you We're here for you anytime. Learn everything you can so you can advocate for your child.

 

[Angrybird]

Hi Shelley and welcome to the forum. I am sorry about the diagnosis, it definetly must have been a shock and a lot for you and your family to take in. It is good you have joined us as there is a lot of helpful info and support here.

I am on the Aza for the second time and with regards to the concern about cancer I tell myself that there are many people out there who are on no meds what so ever and they still get it so I would rather be on it and have my crohns under control than not. This is also a 'might' situation so it may never happen. I of course always hope that I won't need to be on this forever at that one day a cure can be found or med can be created that doesn't run the risk of causing half a dozen other issues.

Wishing your boy well soon.

xxx

 

[Mom2oneboy]

Hi Shelly

Welcome, we are new to this too. 16 year old girl dx in January 2012. My daughter didnot have typical symptoms until early November 2011. My daughter was swimming ten sessions weeks in early last October.

Still no diarrhea or no blood in the stool.

Sarah's GI believes she may have had crohn's for up 3 years prior to dx.

Hi Catherine. Thanks for the welcome. How is your daughter doing now? What symptoms did she have that started you on the path to finding out about the Crohn's? Thanks for sharing you story. It helps to know we are no alone on this journey!

 

[Mom2oneboy]

Hi Shelley and welcome! I can't imagine what you're going through, it must be so overwhelming A few things:

1. I would suggest checking our our parents of kid's with IBD forum. There are many parents in the exact same predicament as you and the support there is amazing.

2. If he has active disease in his terminal ileum, I would suggest getting his vitamin B12 levels tested. Vitamin B12 is absorbed in the terminal ileum and people with Crohn's Disease are commonly deficient which is bad news. A multivitamin will NOT correct this. I'd also suggest getting his folate and vitamin D checked as well for good measure.

3. We also have an Imuran forum here so you can educate yourself on that.

Hi David, thanks so much for the welcome! I have added your B12 and Vitamin D tests to my rather lengthy list of things to discuss with the doctor at our next visit. I'm so happy to find a site with people that have so much knowledge about this disease!

 

[Mom2oneboy]

Hi Shelley and welcome to the forum. I am sorry about the diagnosis, it definetly must have been a shock and a lot for you and your family to take in. It is good you have joined us as there is a lot of helpful info and support here.

I am on the Aza for the second time and with regards to the concern about cancer I tell myself that there are many people out there who are on no meds what so ever and they still get it so I would rather be on it and have my crohns under control than not. This is also a 'might' situation so it may never happen. I of course always hope that I won't need to be on this forever at that one day a cure can be found or med can be created that doesn't run the risk of causing half a dozen other issues.

Wishing your boy well soon.

xxx

Thanks Angrybird!! Is the Aza keeping your disease in remission? Has it caused any other side affects for you? Thanks for sharing your story.

 

[David]

Hi David, thanks so much for the welcome! I have added your B12 and Vitamin D tests to my rather lengthy list of things to discuss with the doctor at our next visit. I'm so happy to find a site with people that have so much knowledge about this disease!

Sounds good. If you want to arm yourself with a little knowledge about them, start here:

[wiki]Vitamin D[/wiki]
[wiki]Vitamin B12[/wiki]

At the bottom of each of those articles are additional threads that discuss each. If/when you get the results of the tests, get the actual numbers, don't let them just say, "He's normal" or "He's a little low". You want to start tracking EVERYTHING.

 

[Angrybird]

Hi there, my blood results from Friday 2nd show that all my levels are back to normal limits and my tum is feeling good, I am nearly ready to say the 'R' word I have one dosage increase to go tomorrow and then I will be on my maintainence level. I have a few aches and pains but this could be because I am tapering off the steroids at the same time so once things are fully settled with meds I should be good.

 

[Catherine]

Hi Shelley

Sarah's story, is my daughter thread. My sarah had alway been a very active, thin girl with low iron which was not help by taking iron.

Everything changed in november when she began to have stomach pains every day and lose a severe amount of weight. At time of dx she was about 44kg she 5ft 8 and spent all time sleeping.

Sarah is much better

Catherine

 

[DustyKat]

Hi Shelley and :welcome:

I'm so sorry to hear about your boy...:hug:

You have already been given fab advice so I have little to add except to welcome you to the forum! It truly is a wonderful place for information, support and friendship.

I know you have the link to the "weighing up the risks" article. It is hard to overcome the fear and in all honesty you probably never do but as time goes on it does become less all consuming. It probably isn't a bad thing to retain a certain amount of fear as it means you maintain a healthy respect for what this disease and it's treatments have the potential to do, no matter how slim or rare, and therefore you remain vigilant.

I think it is also important to try, and I know it is hard, to keep the fear out and look at things rationally. No matter what treatment path you choose you need to be honest with yourself and look to the tests and what the child in front of you looks and presents like when analysing if something is working or not. Try not to hang onto something because what is suggested next seems horrific. Every thing that we use this treat this disease whether it be diet right through to the biologics and in any combination in-between will work for some and not for others. Because your child does not respond to milder alternatives does not mean you or they have failed, it just means it wasn't right for them.

The best advice I can give is to read, read and some more. Ask. ask and ask some more. Question, question and question some more. In doing so your knowledge will grow and you will become the very best advocate for your child that you can possibly be.

Good luck and welcome aboard!

Dusty. xxx

 

[Mom2oneboy]

Thanks you Dusty. I have already learned so much from the people on this forum. In my short time here I can already tell that you are a wealth of knowledge and a real blessing!

Shelley