Son just diagnosed

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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. :(
 
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
 
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:)
 
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.
 
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
 
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.
 
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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.
Click to expand...


Good idea i will talk to his counselor at school next week :smile:
 
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...
 
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
 
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 :)
 
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!
 
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)))
 
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! :)
 
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.
 
I'm glad to heear he got to go camping. Did the doc try vitB for his tiredness?? It helps sometimes.

{{HUGS}}
 
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!
 
im glad to hear that it went well!
hopefully the imuran will make him feel a lot better. good luck!
 
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
 
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
 
:depressed: 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!!!!!!
 
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?
 
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
 
:depressed:
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
Click to expand...
 
son just started immuran

:eek: 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!
 
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.
 
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.
 
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 :(
 
My son has had a sore throat for 2 weeks , a stye on his eye stayed home from school yesterday but got his blood taken just waiting for results maybe he'll take less of the immuran- its hard seeing him sick!
 
momandsonofcrohns said:
My son has had a sore throat for 2 weeks , a stye on his eye stayed home from school yesterday but got his blood taken just waiting for results maybe he'll take less of the immuran- its hard seeing him sick!
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Make sure to keep us updated!
 
son got results back

My son got blood results back - his liver enzymes are high- but his gi wants him to be on 100mgs for another month then recheck- im confused i thought he said if they were high he would adjust meds-so i have an apt with his fam dr for blood work fu in a few weeks - in the mean time im having bright red blood for 2 days now when i have a bm (normal consistancy though) i will go see my dr once he is all taken care of - maybe its a fissure or hemr not sure never had this before. Im am tired but that goes with the disease- thanks everyone for listening and responding it sure is nice to talk to others regarding him.
 
I know its hard not to worry though- he got over his sore throat- wasnt strep thank goodness. His stye is gone- just got back from the oral surgeon and they had to cut his gums because his tooth isnt coming up straight- for his braces my husband said tears just coming down his cheeks when they numbed him up about 8 shots poor guy- he is requesting mashed potatos tonight yum! His energy level is shot especially in the morning he gets up to eat then lays back down til 10 min until the bus comes. Otherwise he goes afterschool and bikes and skateboards with his friends i am very thankful for that- he chose to not be in football because of the b-room thing and im so ok with that- his friends have been wonderful about it and watching him take so many meds- he is still taking 8 asacol and his 2 immuran daily- i give him the immuran at night so the nausea doesnt really affect him. I will keep you posted re his next blood results- his gi is from iowa city and comes out by us (outreach clinic) once a month- i sched his next apt for November. To me that seems a little long but i am assuming if liver enzymes go up they just adjust meds and don't need to see him. I am so happy that his bm's are not more than 5 a day like before. Again a teenager sometimes hard to get answers re his bms but i know and feel comfortable that he is telling me what i want to know. Being a mom its a little obvious. He doesnt like the iron pill it really upsets his stomach so he hasnt been taking that his gi said it was fine once the blood work comes back again if they see he needs it they will maybe switch to a dif iron pill. Thanks again for listening :)
 
Hello again quick update had more blood taken his inflam markers are up they are giving him 25mgs more total of 125 then in 3 weeks take blood work again and see if it improves. He is so fatigued but keeps going thank goodness. I think i will ask his gi about b12 shots it helped me. Asacol now comes in 800 mg tablets so he only has to take 2 in morn and 2 at night with his 2 1/2 immuran 125 mgs the asacol pill is a little bigger but he likes not taking 8 anymore :) He is having bloody stools so we finally got the stool test done got back results today negative. Good news but what is the bleeding from? His gi did a rectal finally i left the room so he couldn't say no to him. He said no fissure or hemmohroid - it is not every day but now he is saying he has pain with it- asked him if it was on the left or right side he said he didn't know again getting aggrivated with mom asking questions- his gi mention possibly another colonoscopy for him which i know will be devastating for him! Im thinking a week or two of being admitted cleaning out the gut, iv fluids and get the damn colonoscopy done to. I pray he feels better he looks terrible. A few people at work asked me if he had cancer! He has dark under his eyes and now he never wants to eat dinner. I pray he feels better soon.
 
Hi
I just read this thread. Wow, I'm sorry you are having to go through all this. I can't imagine what it must be like for you. My daughter is 13 and all of a sudden she has become so modest and embarrassed easily. It's only natural that your son would get shy about discussing his bodily functions. He's lucky to have a mom who understands the pain and can sympathize with him. I will be praying for you both.
 
I am really sorry that your son was diagnosed with Crohn's so young. I too have had it since about 12, but was not diagnosed until I was 15. Kids can be very cruel. I thought I was okay with the diagnosis at first, but then about6 months after I became severely depressed and had a lot of anxiety. I went to a psychologist at the local Children's hospital and it helped me out a lot. They teach you ways to cope with the disease, and they teach you ways to gain more confidence in yourself and learn to face your fears.

I would really recommend getting him into something like that, or even a Crohn's support group.
 
hi masoc, sorry your son still isnt doing well :(

in one of your posts a while ago you mentioned that your son had a stye in his eye? i just wanted to let you know that crohns can also cause problems like that with the eyes. im not sure what its called but ive had it many times before, fortunately they havent acted up for a long time though.
what did it look like? mine was always a small white-ish or pink bump RIGHT where the iris meets the white of my eye. it was never anywhere else on my eye, whenever it popped up it was somewhere in that ring. and then from the bump there were always a few pink blood vessels that ran from the bump outward, like bloodshot eyes when you are tired, but this was only around where the bump was.
ANYways, i went to the eye doc and they said it does have to do with crohns BUT the thing is that non-crohns people can get it too.
but they prescribe mild steroid eyedrops and for real, the thing is gone in 2 days. those drops are amazing.
was it really uncomfortable for him to blink? it feels like you have something stuck in your eye, feels like when you have an eyelash in there or something.
ok well hopefully that helps, look into it if he should have problem with his eye again!

one more thing, as far as the bleeding when he goes poo, is thre any chance he has a skin tag? its not a hemmroid, it is just a bit of skin that forms right around the bum hole, i got quite a few (my surgeon decdided to remove them when i was under for something else and it was a breeze) and they DID cause some pain and did bleed. over time though they stopped bleeding and hurting. almost like they were on their way to being dead bits of skin.
well see if you can get a peek or ask him (i know he is embarrased, poor guy =/) but i hope it will help.

good luck masoc!! much love and concern to you and your son :)
 
momandsonofcrohns said:
asked him if it was on the left or right side he said he didn't know again getting aggrivated with mom asking questions
Click to expand...

Sorry to hear about your son.

The part above did make me chuckle though. I got diagnosed at 16 and I am 31 now. My mom still aggravates me with the questions.

It's a moms job to ask, and it is a young mans job to be tough. It happens. Even into my late 20's I had times where my mom demanded to go to the Dr. with me because she felt I wasn't giving the whole story and I probably wasn't.

I hope he starts feeling better soon. He's got a long haul ahead of him, but if he takes it all with the right frame of mind it can teach you a lot about life.
 
CrohnsHobo said:
Sorry to hear about your son.

The part above did make me chuckle though. I got diagnosed at 16 and I am 31 now. My mom still aggravates me with the questions.

It's a moms job to ask, and it is a young mans job to be tough. It happens. Even into my late 20's I had times where my mom demanded to go to the Dr. with me because she felt I wasn't giving the whole story and I probably wasn't.
Click to expand...

N1Lol14.gif
I'll have to admit, it made me grin too. Keith was diagnosed at 12 and I've seen more of my share of exasperation from him as I ask him again what his bowels looked like today.
 
I can't image how you feel with your son having Crohn's at such a young age. I am 24 and every time I have to go to the er I take my mom. Why? Because I know she will get things done. My mom asks everyday if I had taken my meds and how I am feeling. I found this great tracker from Crohnsandme.com Its called the wellness widget. You can track how many bm, pain levels, fatigue, and how you feel overall. Then when you see your gi you can print out reports of the last month or even few days. It might be a great way for him to keep track of himself. Oh and there is a place to write notes too, I put down when I taper if there was blood in the bm, or food that I find I cant eat. Maybe this will help you guys out.
 
Thanks for all the posts i spoke to his gi's nurse tom today - unfortuanately dr was doing procedures all day. He asked me tonight when do i see my dr again i asked him why he said when he poops it hurts - i thought it was his stomach!~the nurse is supposed to call me tomorrow with what the dr wants next- just figures the stool sample he finally took had no blood in it and whatever they were checking for came out negative good news but why has he been having bleeding here and there and why is there pain when he goes? Yep could be a skin tag but he wont let me look ill leave that up to the dr. So i will hear news tomorrow - i know he said if his inflam markers don't go down he may have to do the remicade infusions. If he wants to do the colonoscopy again i hope they admit him cause it's going to be tough having him drink this. When he was admitted with this lovely disease they gave him the gallon of go lightly - his gi said they dont use that way for kids thank goodness i think he said pills and some to drink. I am so stressed out right now smoking like theres no tomorrow and i really want to quit soon(my husband and i smoke outside) it will happen soon- once everything starts getting better. Im wondering is there another test that they can do besides drinking the prep but go up his but? He hasn't had an upper gi yet either. So im thinking maybe they can go that route first i don't know- just thinking- thanks again for listening-again i wish this was all a nightmare and im going to wake up and he doesnt have crohns:(
 
Spoke to his nurse- they are wanting him to to the steroid again for 6 weeks then go off- maybe help his flair- has an apt to see his gi 12-4 also. Blood work in 2 weeks. Will update when i know some more- he is soooooo tired especially in the morning to go to school. :( The nurse said when the colonoscopy is needed they do the 4 day prep it is some powder you can put in anything and doesnt have a bad tase yeah:) He did dring the barium at some point- so maybe this steroid will help for now.
 
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My son was 13 when he was diagnosed after a year of weird complaints, not knowing if it was school stress or what. Anyway he was on Asacol, Nexium, 6MP but never really made progress until he was switched to Remicade at age 16. Now he is 20 and Remicade stopped being effective at the beginning of this year. He was put on Humira but it has taken me 6 months to persuade him to get it started! The older they get the harder it gets to force them to do things. I still manage his condition, he flatly refuses to, I guess he will as he grows mature.
 

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