04-16-2009, 07:15 PM   #1
momandsonofcrohns
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son just diagnosed

Hello everyone- im a mom of crohns and my son just got diagnosed at 13 yrs old I feel so bad for him, he's had diarreha and loose stools since november. We got the news on friday- he is taking 12 pills a day 8 asacol and 3 entocort and 1 iron pill. We just got back from giving blood to see if he can tolerate the 6mp eventually- is there anyone out there that has kids with this and used these meds? I have had crohns for 7 yrs now and am taking asacol myself- im in remission thank goodness! AHe is still having stomach pain- he was admitted to the hospital and had a ct that showed thickening of the ileum, colonoscopy, stool samples, and numerous blood work- he is so tired all the time i just wish this was a nightmare.
04-16-2009, 08:58 PM   #2
jed
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so sorry to hear there are two of you in one house with this crappy disease.

suppose one benefit is you know how he feels, and you'll be able to be a great support for him with your knowledge.

no kids here

welcome to the forums
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Current meds - Methotrexate, the rest werent doing anything.
Current state - hopeing poop softener, honey and cinnamon tea make me poop like a crohnie again..

my story - http://www.crohnsforum.com/showthread.php?t=3093
04-16-2009, 09:40 PM   #3
momandsonofcrohns
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Thanks Jed- I just hope the meds help him and he starts feeling better soon!
04-16-2009, 09:44 PM   #4
jed
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it's just so many pills for a kid so young to have to endure.

apart from feeling like crap physically, hows he coping mentally with the news? has he seen you go through many roungh fazes?

heres hoping the meds do kick in for him. best wishes
04-17-2009, 06:26 AM   #5
danman
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So sorry to hear that. I had the disease at that age, but didn't get diagnosed until a few years later.

It's tough at that age, because boys of his age don't understand. It made me turn into a bit of a loner at school. It took a long time before I started to get confidence in myself.

Perhaps he should see a child psychologist/councillor. There may be no problem now, but it may start to be a problem later. Children can be cruel to one and other.
04-17-2009, 09:29 AM   #6
Stleger88
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Hi welcome to the forums I was diagnosed around your sons age and it can really suck, glad you found us if you have any questions feel free to ask them, everyone is here to help
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Diagnosed 2002

That one day we will taste the outside air,
free from pain
and the need for meds;
in, deserving better.

Verse from "crohnies"
By: Andy Carrington
http://www.andycarrington.co.uk
04-18-2009, 09:52 AM   #7
momandsonofcrohns
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When i told him he had crohns he just looked at me - yes he's seen mommy at her worst- he is still hanging out with his friends. I also told his good friends about it and explained what the disease was- they all seemed concerned so thats good- i emailed all his teachers at school as well saying if he needs to use the rest room let him go(some don't let you go - remember the days?) We got blood work done to see if he can tolerate the 6mp and something with chickenpox but prob wont get the results back soon- it had to go to california- long story short may 1st is his next gi visit- hopfully they will know what else we are doing- maybe he wont have to take all these- but im pretty sure that he will have to be weened off the entocort.

Last edited by momandsonofcrohns; 04-18-2009 at 09:56 AM.
04-18-2009, 09:55 AM   #8
momandsonofcrohns
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danman said:
So sorry to hear that. I had the disease at that age, but didn't get diagnosed until a few years later.

It's tough at that age, because boys of his age don't understand. It made me turn into a bit of a loner at school. It took a long time before I started to get confidence in myself.

Perhaps he should see a child psychologist/councillor. There may be no problem now, but it may start to be a problem later. Children can be cruel to one and other.

Good idea i will talk to his counselor at school next week
04-18-2009, 11:51 AM   #9
Stleger88
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i missed my entire 8th grade year of school because of crohns :-/
04-19-2009, 10:46 AM   #10
ladyB
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Hey mom,
I was dx'd at 9 years old. At that age I didn't really get the severity of the disease.
It'll probally help if he has friends that are understanding.
Kids can be very mean and teachers too. I had a teacher who knew my condition and wouldn't let me go cuz there was another girl in the restroom!! I ended up going home cuz I didn't make it to the bathroom. What did she think we were gonna do, go and get all the test answers while we were in the bathroom?????
It is nice though that he has a Mom that will be so understanding of his CD.
I look forward to hearing more about you.
You can ask away here...
04-20-2009, 07:56 PM   #11
bradraz
 
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Hey, i am 14 years old and i am currently taking asacol 1200 mg (9 pills a day) prilosec 2 pills a day. And prednisone 1 pill at day (20 mg) What me and mom mom did was talked to my guidance counsler and put me on a "504" basicly what it is if you miss like 3 or more days of school they will send out a tutor so you dont fall behind. Good luck
04-20-2009, 11:53 PM   #12
kello82
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hey MASOC (i like the acronym that pen made)
well im glad you found us here, itll be a great place for information for both of you!
like many of the others, i was dx young, age 9. and yup it is difficult dealing with classmates/teachers and everything. i found that it only got easier as we all got older and more mature. still though, i kept my disease as private as i could, even though i would be out for long periods of time, no one knew the details except for my close friends.
i think it was a great decision for you to let his close friends know, they support me in a way that is so meaningful.
i saw a counselor a few times....it wasnt for me i guess. i never really had problems opening up to my parents, so i guess i felt like "well why do i have to have a special person to talk to?". but i think its definitly worth a try, it could be a huge stress relief for him to have that outlet.
i have taken the meds you mentioned he's on as weell as the 6mp, and none of them really did the trick for me. but as you already know everyone's disease is different and everyone responds to these meds in totally different ways.

oh yeah and bradraz mentioned the "504" program. i was on that too! funny, i have never heard anyone else mention it, so i thought it was not used anywhere lol.
but yeah, like he said it basically categorizes you as a "disabled" student. so then you can dictate what services he will need- free access to bathroom at all times, extra time to complete assignments when necessary, tutors, etc. i even finished eleventh grade over summer vacation, so without the 504 i wouldve been held back i believe. it was pretty helpful.

keep asking any questions! i went thru all of grade school dealing with this, so my parents and i have figured out a lot of ins and outs when it comes to school issues, and id be glad to share anything if youre having trouble.

good luck
04-22-2009, 08:34 PM   #13
momandsonofcrohns
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Hello everyone- i just got a letter from my sons gi- she said the findings as well as his hiostory and physical exam findings are strongly suggestive of chrohns diseas his patholoogy results of his colon are suggestive of lymphocytic colitis which may be part of imfalmmatory bowel disease- it is often treated with similar medications used to treat crohns disease - his histologic appearance of the ileum is typical for crohns disease the appearance of the colinic biopsies shows an appearance that is characteristic for lymphocytic coloitis- some believe that they are two seperated diseases occurring siumultaneously whereas others feel that crohns disease may occasionally have an appearance similar to lymphocytic colitis- i am a little confused i guess- we are going to fu with his gi on may 1st to see if he is able to tolerate 6mp or another med- he is currently taking 8 asacol 3 entocort and 1 iron a day- my ins only does 100 at a time!!!! I hope we can put him on something else that is once a day or so- has less stomach pain, and less loose stools so i guess its working.
So nice to hear from others regarding this- i know he is 13 but he is my baby!
04-25-2009, 09:57 PM   #14
ladyB
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Hopefully your apt will help clear up any confusion you have. I've learned not to leave until I was confident that I knew what they were talking about.....which can make for some long visits for me...lol
He will be 48 yrs. old and still be your baby LOL. I don't think there is anything harder then seeing your children go through something that you , as a parent can't fix.

(((hugs)))
04-29-2009, 07:53 PM   #15
momandsonofcrohns
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I spoke to my sons counselor at school and we are going to get him on that plan it sounds great- bathroom breaks whenever he needs them and help with work if he is hopsitalized or sick! Thanks all for so much info re this. We go to his gi on Friday i will keep you posted! So far his meds are working although he is having some loose stools- probably because he cheats a bit with the food! I am also wondering if he should be on folic acid and a multi vit as well- i was also thinking b12 shots. I spoke to a friend at work and he said there is a book out i dont have the name of it right now but it is suppose to be great- insurance doesnt cover the medicine its some natural probiotics or something and he beat crohns! He said that the meds they give for crohns just masks everything- he is also a chiro so of course he's not that into meds im going to buy the book and let you all know the name of it and what the natural stuff is that you are suppose to take. Thanks again everyone- its nice to chat with people who have gone through this and i feel alot better!
04-29-2009, 07:58 PM   #16
momandsonofcrohns
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Thanks! What meds are helping you now? He did go on a camping trip last weekend for boyscouts so again he's moving and grooving but gets so tired quickly! He has an apt with his gi fri so im sure there will be some kind of change with his meds- hopefully off the steroid and something better and not so much a day. Hope you are doing fine with your disease- im in remission but had a few flares when he was bad but im ok now- just concerned about him is all.
04-30-2009, 09:48 AM   #17
ladyB
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I'm glad to heear he got to go camping. Did the doc try vitB for his tiredness?? It helps sometimes.

{{HUGS}}
04-30-2009, 08:48 PM   #18
momandsonofcrohns
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We go to the gi tomorrow will let you know what happens
05-01-2009, 01:18 PM   #19
momandsonofcrohns
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Just got back from the ped gi- he said all signs and reports etc points to crohns he is going to get the results from the blood work to see if immuran will work for him he will only have to take 1 pill. He said immuran seems to work well with kids and of course he will have to be monitored with this- blood work for a while. For now he is still taking 8 asacol 3 entocort and 1 iron- we will start to ween him from the entocort and asacol then i guess the immuran once we get the ok. I feel good about the visit- lots of questions answered. I hated hearing about the greater chance of cancer even though i knew that it still bothers me that it could happen to my child- he said no to folic acid or mutl vit if he is eating right. Didnt want to do b12 until they check his blood and see if he isnt absorbing it right now-they said he is tired prob from the disease but also being a teenager So thats it for now please keep him in your prayers! im thinking of asking my gi if i should do the immuran 1 pill a day sounds nice!
05-01-2009, 01:23 PM   #20
kello82
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im glad to hear that it went well!
hopefully the imuran will make him feel a lot better. good luck!
05-01-2009, 02:48 PM   #21
garygepner1
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My Support Groups:
I seen your post and just wanted to pop in and send you and your boy a little note.

Hey there kiddo, I have CD to. I hope all goes ok for you and you go into remission forever. It must be hard on you at times right now and I can relate to that. But remember to keep your head held high no matter what CD throws at you. You always have Family and Friends.
My suggestion to you is to get to know CD and how it affects you, research and study it as much as you can. Take your meds as the Doctor(s) prescribe, talk to your Mom/Dad/Doctor about any changes in how you feel. Also tell them how the meds are doing and making you feel if its working or making you sicker and eat as healthy as you are able to. Listening to what your body is telling you can help to, only you know how you're feeling. Dont be afraid to ask any questions, there are NO stupid questions. Until next time kiddo you take care and me and my Family wish you and your Mom the best.

Sincerely and Respectfully, Gary
05-02-2009, 08:01 PM   #22
momandsonofcrohns
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Gary,
Thanks for the post- everyone has been so wonderful on this site! We are going to start the immuran on Monday as well as entocort and after 4 more weeks start weening him from it- im very nervous about this immuran though especially with this swine flu thing. I heard he can get nausieated from this but at least they will be keeping an eye on the blood work with this with his liver and all. He is happy that he will only have to take 1 pill instead of the 8 asacol. So 1 immuran 1 iron and 3 entocort! Ill keep you all posted
05-03-2009, 08:40 PM   #23
momandsonofcrohns
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Ok im thinking of telling his gi no to the immuran ive been reading so much on it and just wondering if im making the right decision for him. He even asked if he could just keep taking the asacol- i think he is seeing my stress re this as well as always being on the internet to read about it. I will see what else we can do i know he said the remicaid infusion is kinda scary for kids as well as long to infuse, he 2 bms today very loose- had a headache this morning rode bikes with his friends today but very tired now. His GI is at univ of iowa childrens hosp about an hour away and they come to davenport one friday a month. Just dont know what to do i want to be a good mom but immuno supr drugs are so scary ive never been on them because of how i felt now im suppose to say ok for my boy to be on them? I will call the dr in the morning and talk his ear off probably or the nurse but i have to make a decision-God i wish this was all a nightmare!!!!!!
05-05-2009, 02:14 AM   #24
kello82
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hey masoc
i posted this on another thread and thought it might also apply here


i was bored today and actually read one of the pamphlets that lists all the warnings and things that the pharmacy gives you with your prescription. anyways, this sentence caught my eye:
"remember: your doctor prescribed this medicine for you because he/she has judged that the benefit of it outweighs the potential risk for side effects."

to me that pretty much sums it up. if the medicine HELPS improve our symptoms and quality of life, then it is worth the risk as far as side effects.
look at it with numbers:
the med is working. so it has a 100% chance of making us feel better. the risk for a side effect is lets say 1 in 100. 1%. should we really throw away our 100% chance of feeling better for the 1% chance of side effect? then we have a 0% chance of feeling better with a 0% chance of side effects. our chance of feeling better goes down 100% while our chance of side effects only goes down 1%. not exactly equal. one definitly outweighs the other.

i really hope that made sense.....


i understand the scaryness with the immuno suppression, espec with this swine flu ugh! but the risk really has to be weighed with the benefit. if he is ok with his quality of life as is then ok, maybe he doesnt need them right now. but if he is feeling awful then they could really give him so much back.
i know youre working hard at this and will decide whatever is best for him.

good luck and let us know how it goes ok?
05-06-2009, 06:40 PM   #25
momandsonofcrohns
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I spoke with the gi and told him my husband and i decided against the immuran for right now- he was very nice about it and understood my views. He also said he would want to ween from the entorcort and just see how the 8 asacol a day will do- if not good we will do the immuran he said the side effects are mostly in adults then in children- so that made me feel much better- we will see how it goes though. He came home from school yesterday with stomach pain, and threw up also but felt better around 4- rode bikes with his friends and even went to his boy scout meeting- did well today he went to school- it was nurses day so i got his school nurse some nice goodies in a basket she has been so awesome with him. I guess we will just play it by ear for now- 1 day at a time, and im sure there will be some flares when weening from the entocort - so either way it looks like the immuran might be the next step- thanks everyone for responding to my posts it means alot to be able to vent about all this! Will keep you all posted
08-08-2009, 09:14 AM   #26
momandsonofcrohns
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momandsonofcrohns said:
I spoke with the gi and told him my husband and i decided against the immuran for right now- he was very nice about it and understood my views. He also said he would want to ween from the entorcort and just see how the 8 asacol a day will do- if not good we will do the immuran he said the side effects are mostly in adults then in children- so that made me feel much better- we will see how it goes though. He came home from school yesterday with stomach pain, and threw up also but felt better around 4- rode bikes with his friends and even went to his boy scout meeting- did well today he went to school- it was nurses day so i got his school nurse some nice goodies in a basket she has been so awesome with him. I guess we will just play it by ear for now- 1 day at a time, and im sure there will be some flares when weening from the entocort - so either way it looks like the immuran might be the next step- thanks everyone for responding to my posts it means alot to be able to vent about all this! Will keep you all posted
08-08-2009, 09:17 AM   #27
momandsonofcrohns
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went to my sons gi yesterday and he started him on 100 mgs of immuran am very nervous about this since this drug and remicaid were on the news re can cause cancer is some people so far no side effects he is keeping him on the 8 asacol as well- hopefully this will help with the number of bms a day! I hope this works for him am nervous as hell though he needs to get his blood checked in 3 weeks and go from there immuran here we come please work!
08-08-2009, 03:48 PM   #28
My Butt Hurts
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Imuran is said to take up to 3 months to work (you probably knew that already - but you never know) so be patient.
What about something similar to asacol, like sulfasalazine or pentasa? I think they work in different spots in the intestines, but are very similar.
Stay strong, mama.
08-09-2009, 03:24 PM   #29
momandsonofcrohns
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Yes thats what his doc said- he is hoping to do football when school starts next week but since i have the 504 plan if it gets unbearable he can quit its just jr hi stuff- his gi may see how this works with the asacol but hopes to get him off that and just do the immuran. He said if this doesnt work we will look at the remicade infusions. So far so good he hasnt taken the immuran for 2 days now i think im gonna either have him take it in the morning after he can choke down something to eat or after dinner not sure.
08-23-2009, 04:45 PM   #30
momandsonofcrohns
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Ok my son is taking 2 immuran a day so far so good- just waiting for them to call so i can get him in for a blood test- he seems tired but that goes with the disease at least he's not nausiated its been a couple of weeks now- he decided not to play football this year thats ok- also met with the teacher who is doing the 504 plan on him- i feel much better he is such a trooper- 8 asacol 2 immuran and iron when he remembers
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