My 9 year old newly diagnosed

[jenstaci]

My 9 year old was just diagnosed on Wed with pancolitis Crohn's. He has it in his esophagus to his stomach and down through small and large intestines. They found strictures in his small bowel and granules as well. He is on Prednisone, Zantac, iron b/c he is anemic, and Flagyl. Then in about 3 months he will be weaned off of these and put on imuran and asocol. I dont know anything about these, do they have side effects? What can I do to help him?? Should we change his diet? Supplements? How does this effect his life and ours? We have cried for 4 days straight! Any insight would be greatly appreciated!! Thanks so much!
Mom to Micah!:ghug:

 

[my little penguin]

first breathe
ok we are here for you my Lo was dx last year.
basically the same areas stomach to rectum witha few granulomas put in for good measure.
Imuran has a long list of side effects but so does tylenol - dont read the box.
It can help.
WE used 6-mp for Ds for about 6-8 months.
no real side effects- just make sure they check his blood closely weekly in the beginning then every two weeks then every month.
Ds's liver levels in his blood went up so we changed a few things around.
by checking the blood you eliminate any problem early.
food wise you can try EN- it helped my DS in addition to drugs.

Here is a link to the EN thread


http://www.crohnsforum.com/showthread.php?t=36345


take it day by day for now.

 

[Clash]

Welcome to the forum, so sorry you had a need to seek us out. The time after dx can be the hardest as it seems you are bombarded with info and are making decisions with little time to digest dx and all that it brings with it.

We have subforums and threads on a lot of the treatments used with IBD and also a wiki forum that contains credible info on all things IBD. In fact, if you click on any of the highlighted words in the posts they will take you to their wiki entry all entries list their sources and also contain links to threads about that wiki entry where you can find other posters experience with the treatment, diet, procedure supplement etc.

We also have a diet forum and supplements used where there is great insight to what has and hasn't worked for others.

Lastly, feel free to post concerns, questions, vents or successes in our parents forum. All the Moms and Dads there have great advice, wisdom and compassion as well as a wicked sense of humor all of which has been invaluable to me throughout this journey!

Things may seem down and out at times but when treatments start working or you child battles through with an inner strength that shines inside and out you'll realize that things might be different but things will be good again.

I hope his treatment regimen brings him relief and healing and he is feeling good again real soon!

 

[Jennifer]

Hi and welcome to the forum!

I was also diagnosed when I was 9 (I'm 30 now and in remission). Everything will be ok. You might want to read through some of the forum success stories here: http://www.crohnsforum.com/forumdisplay.php?f=72 Perhaps hearing good news from many members on the forum will help you feel a lot better.

I've taken Asacol, never had any side effects from it and took it for well over 15 years (I'm only on Humira currently). I haven't taken Imuran but I believe its similar to 6MP and I took that for about 15 years with no side effects from it either. Only medication I've ever gotten noticeable side effects from was Prednisone.

Glad the diagnosis is out of the way and now you're little one can be on their way to remission with proper treatment. Only diet I ever followed during a flare (I don't follow any diet while in remission) was the Low Residue Diet http://www.crohnsforum.com/wiki/Low-Residue-Diet. You can make anything low residue. Its a real easy diet to follow and helps reduce symptoms by eliminating more obvious triggers.

Good luck and keep us posted!

 

[Farmwife]

Sorry to hear about your son.
I am, glad you found your way here.
I'm a mother to a wonderful little 3 yr. old farm girl named Grace.
We are still going through the dx process.
My GP feels she has the rarer of the IBD family.
Of course she's always be talented.:ybiggrin:
Sorry I can't help you in the way of meds.
I will say that I had the same worries about the future.
Grace has been in pain since six months old and
her flares have been getting worse.:frown:
I found my way here and realized their's a whole lot of parents out their that are going through this same as Grace and her family.
I'm still in limbo about the true dx of Grace but one thing is for sure....
I'm so grateful for the friendships and advice I've found here.

Hang in there. It will get better and you all will find a new normal.:rosette2:'
You WILL get your son to better health!:thumleft:
We'll be here every step of the way.

 

[upsetmom]

Hi and welcome
You have found your way to an unbelievable place there's always someone to offer advice or just comfort. Hopefully things settle down quick.

 

[Sascot]

Hi and welcome! Sorry to here about your son. My son was diagnosed around this time last year and although I still get the odd day here and there where I get quite tearful, I have mostly got used to it and life kinda just has to carry on. There are great threads on the different medications which give alot of information (although sometimes I think it might be better not to know )
Good luck with the treatment, I hope it works soon!

 

[DustyKat]

Hi jenstaci and :welcome:

I am so sorry to hear about your boy and what you are going through...:hug:

You have been given fab advice hun and it is surely is true that the early days are the hardest. It is such a shock to receive a diagnosis like Crohn's for your baby. All your dreams and expectations for the future come crashing down and are replaced with fear, uncertainty and grief. We all cry, it is normal, natural and just and what loving Mother wouldn't and that is what you are. :hug:

The best advice I can give is to read, read and read some more. Question, question and question some more and in doing so you will become the best advocate for your son that you can possibly be. With knowledge comes power and with that power comes control. As you learn to take control of this disease you become stronger and more able to cope. It will get easier hun and your boy will get better. Your old life disappears and is replaced by new one, one in which you truly appreciate the boring, the normal and the simple things in life...well I do anyway! :lol:

As has been said, all medications have side effects and i know the ones we are talking about have more than their fair share. I would be lying if I said I wasn't freaked out that my kids take these drugs because I am but I have also experienced what untreated crohn's can do and that is just as scary. My children have been fortunate not to experience any side effects from medication and they are both in remission, surgically induced, and living life to the full.

EEN is certainly something that needs to be considered and discussed. I would start with that if I were you and also a PPI rather than Zantac. Start with what you are dealing with here and now, his diagnosis, it's severity and the treatment. Focus on the drugs he is currently taking, read up on them and start asking questions then branch out from there. Ask the doctor, ask the nurse, ask us. The main thing in asking questions is to always remember that there is no such thing as a dumb question. It matters not if it has been asked a hundred times before because this is your boy and your story and then there is always the chance that it has been thought about by others but never asked!

Good luck hun and welcome aboard!

Dusty. xxx

 

[Jenn]

So sorry to hear about your son. Welcome to the board. It is overwhelming in the beginning. There's is lots of info available about treatments. Don't be afraid to pester your doctor and nurses with your questions too. You have to be comfortable with these hard choices for your son. I hope he starts feeling better soon!

 

[momoftwinboys]

:welcome: Sorry to hear about your son.

Things will get better...it is overwhelming in the beginning, crying is normal.

There are others going thru/gone thru the same thing. People are happy to share what they have learned/experienced. Unfortunately, we are part of the group whose lives are affected by CD or UC either for themselves or a loved one.

:ghug:

 

[jenstaci]

Thank You SO SO much for all the support! You have NO ideas how that has helped me!! We just got word that we are starting Asocol and Imuran and in 2 weeks will start weeming him off the predisone! Anyome else have/had the combination at the beginning??:hug:

 

[Clash]

I'm not sure about the combo, but several of the parents have used imuran. Asocol, generally, is considered one of the safest meds side effect wise. If the meds were set up in a pyramid Asacol would be at the bottom of the pyramid and the biologics(Remicade, Humira, Cimzia etc) would be at the top. The immunosuppresents(Imuran, 6MP etc) would be right up under the biologics. There are alot of people that maintain remission with Imuran or 6MP. I think Dusty can give you more info on Imuran as both of her kids use it as a maintenance med.

 

[my little penguin]

We used 6-mp ansd asacol for a whil with DS earlier this year.

Outside of elevated liver numbers no real side effects for him.
Clinically it helped some but not enough the only bad Part is waiting for them to see if they will work.
DS is now on Remicade and asacol.
Good luck with the pred wean and the Imuran / asacol.

 

[farmerswifey]

hey there and welcome!!!!!!!!! I have nothing else to offer re the meds, but I can say that EEN is great, and my son (9 and just diagnosed) is onto his 3rd week..he has put on 1/2 kilo and has colour back in his face....

Don't worry about crying, I did just that and thought I'd never stop..hugs to you x

 

[DustyKat]

Reading back over your first post does it mean that he won't be started on Imuran until the Pred finishes?

If this is the case then that isn't the normal regime. It takes Imuran at least 3 months to become fully therapeutic so it should be commenced at the same time as the Pred with the idea being that the Imuran will then take up where the Pred leaves off.

The main thing with Imuran is to ensure he has a TPMT blood when commencing. This tests if he has sufficient levels of the enzyme to break the drug down and therefore a higher chance of avoiding the serious side effects of the drug. The other thing is to ensure his blood is regularly monitored, the bloods should be done weekly at the outset (for at least one month) and then move to fortnightly, monthly, 2 monthly and then 3 monthly. Some doctors will then move them out to 6 monthly. I personally, and this is just my preference, believe that 6 monthly is too long an interval. 3 monthly is okay but I still prefer 2 monthly. They must do liver functions tests and a full blood counts otherwise there is little value in having bloods done at all if they are only doing them to monitor for side effects.

Both of my children take Imuran and have not had any issues with it, touch wood!

Dusty. xxx

 

[Tink572]

Hi and welcome to the forum!

My son was also diagnosed at 9--he is now 14. I cried for weeks after his diagnosis. Shoot, I still cry about it sometimes! Getting this diagnosis is a tough pill to swallow, but you will be amazed at how strong your child is!

For a short time my son was on Asacol and Imuran. We dropped the Imuran after just a couple of months though (I don't remember why--no side effects) and he was just on Asacol, then switched to just Lialda. For about the last year he has been on Remicade and Lialda.

You've found a great place for support and information!

 

[DustyKat]

Ugh! Just saw your last post...:facepalm:

Dusty. :ybatty:

 

[izzi'smom]

Hi...wanted to say welcome and sorry that you had to find your way here!! I think that every IBDer is different-dietary chnages may help one and not make a shred of difference to another. I *do* think that EN can help. We haven't used either of those meds yet, so I am no help there....but want to wish you luck!