was told in july this year 11 year daughter has crohns

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

becjules
New Member


Date Joined Sep 2007
Total Posts : 2
   Posted 9/12/2007 10:38 AM (GMT -7)   
hi i am new to all this my daughter is 11 about to be 12 well heres her story she has had acid reflux for 5 years and med done no good so in june they sent us to a gastologist doctor when we seen him he said something else had to be going on so started doing blood work 1 was for crohns  and it came back postive so we had the scope ran down both ways well it came back that she does have crohns i would like to here from parent that have kids with this are someone who found out when they were young at first they put her on prednisone for 10 days and asacol 6 tablets a day and nexium she is no longer on the prednisone  but is on hyoscyamine sulfate 4 time a day because her stomach killed her it still does up until now i would not have thought she had crohns because i did not thank she had any sympothons of it but i did not know anything about it until now i am learning so i need some help learning more  but it's like the meds. are making her have more symothons are maybe she had them and i just did not put it with this disease sorry for this being so long would like to here other people storys thank you

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/12/2007 12:36 PM (GMT -7)   
First off welcome to HealingWell. Sorry you have to be here though. It always kills me to here about little ones with this disease. There are alot of great and supportive people on this board. Medications for Crohns are sometimes as bad as the disease itself. But they are necessary evils. Please feel free to come and vent or ask any questions you may have.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/12/2007 12:39 PM (GMT -7)   
Also, there is another board that is for parents of children with Crohns that might be helpful for you too. http://www.dragonpack.com/ibdsupport/parents/

You are more than welcome to post here, but thought maybe talking to other parents might be helpful for you too. Good luck and God Bless!
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Mormor Vicky
Veteran Member


Date Joined Mar 2007
Total Posts : 684
   Posted 9/12/2007 12:51 PM (GMT -7)   
Hi Becjules,  Welcome to Healing Well.  I'm so sorry about your daughter.  I had a similiar experience with my duaghter.  She was 12 at the time and said it hurt when she had a BM.  I thought she had hemmies so I gave her Prep H cream to use.  She didn't mention anything for few months and then when we went to a swimming party she said her butt hurt from the clorine.  I still thought hemmies but decided to take her into the pediatrician just to be on the safe side.  Turns out she had a peri-anal fistula and that what was causing the burning sensation and pain.  She was put on pred but had trouble coming off of it.  She also had growth failure and had to do nightly ng feedings to get extra nutrients.  She was on Asacol and Flagyl also.  She hated them all and I felt like an ogre making her take them. 
 
Be careful though.  Make sure your daughter is involved with her treatment and give her some options and let her make some decisions.  I think I was so worried because I had never heard of crohn's and didn't have anybody to confide in that I was over protective.  As soon as Michelle turned 18 she stopped taking her meds and I couldn't convince her to take them.  She is now 26 with three beautiful children and is doing relatively well.  I do worry tremendously about her because I know when she comes out of remission it is going to be really bad.  Since my diagnosis last year I'm more aware of what can happen then before so I'm really worried now.  I have made her promise that as soon as she gets health care insurance she will see a GI.  She never wanted to talk about her CD and it has only been in the last few weeks that we have conversations about it.   She is worried about her daughter because Skyler always complains of a tummy ache and is a very finicky eater.  Skyler will be 6 years old tomorrow and only weighs about 33 lbs.  But her mommy is teeny-tiny too.


Vicky / 47 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
 
Daughter (26) also has Crohn's since she was 12.
 
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor


jdiane
Veteran Member


Date Joined Jan 2003
Total Posts : 1131
   Posted 9/12/2007 1:19 PM (GMT -7)   
A good peer site for your daughter.

www.ucandcrohns.org

A joint project of the Crohn's & Colitis Foundation and The Starlight Starbright Children's Foundation.

This is a site specific to teenagers with IBD.



 .jb
 
Support me in the CCFA Team Challenge!

TeachingAngel
New Member


Date Joined Sep 2007
Total Posts : 18
   Posted 9/14/2007 7:30 AM (GMT -7)   

i'm sorry to hear about your daughter's health.  lucky for you there are forums like this that can offer you some help and advice.  i was diagnosed with crohn's when i was 11,  i'm 30 now.  needless to say, it has been a very long and difficult journey.  when i was a child i complained of diarrhea, abdominal pain, blood in the stool and fatigue.  after several trips to my pediatrician and the emergency room, i finally got the correct diagnosis and an excellent gi.  the next few years were full of bad flares and many hospital stays.

be sensitive to your daughters needs during this time.  talk to her A LOT about her health and how she's feeling.  teach her to be responsible for taking her meds.  let her speak for herself during doctor visits.  and be sure that when she's feeling up to it that she stays involved in the activities she enjoys and continues to socialize with her friends.

best of luck to you both.


curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 9/14/2007 1:31 PM (GMT -7)   
Welcome,

I am so sorry to hear that your daughter is having to go through all of this.I will say one thing your daughter has a wounderful mother.I do not have a child with crohns but as you have seen we do have a few that does have kids with crohns.I just want to say you have come to the right place and please know that we will help in any way possible.
Curley
.........
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/14/2007 3:36 PM (GMT -7)   
Hi and Welcome Have you discussed with her Dr. if she needs an antiacid for her stomach some of us take them I need them I am on pred and had to take Pariet for acid reflux and heartburn. It was worse then what tums could handle.Sorry I am not on the same drug as she is on so cannot tell you about the sideeffects but I am on the pred. and could not manage without the Pariot .Hope her GI gets the meds that work and do her the most good.lol gail

Bugabugabooboo
New Member


Date Joined Sep 2007
Total Posts : 2
   Posted 9/14/2007 10:33 PM (GMT -7)   
Hi, I started to read your post and was brought back to when I was 12 and diagnosed with Crohn's.  I was just starting grade 7 when my family doctor refered me to a Gastro. It took seven years for someone to finally see that I was indeed sick and needed help.  I ended up going into the hospital for the up one end & down down the other series of scopes but my gastro couldn't put the camera through my intestines b/c they were so inflamed.  I was admitted right away into the hospital and put on prednisone, mesasal and had a tube feeding me. Finally after one month, and 10 pounds heavier, I was released to go home but continue with the tube feeding throughout the night.  I finished grade school and my first year of high school with many ups and downs and many different medications.  In 2000, I was admitted into the hospital and had emergency surgury on my bowels.  Five years after that surgury I was in the hospital again awaiting a second surgury.  I am now 23 years old, have stopped all the medications that you mentioned and others that I have been placed on, and swear by Remicade.  It has so far proven to be the only drug that doesn't give me nasty side effects and has proven itself to work. 
After going through what I have, and still being so young, I have to say that I can completely relate to where your daughter is now, and what she is feeling.  I would have to say the most important thing you can do as a mother is to be strong for her.  If she is anything like me, she will know when you are stressed or sad about her having this disease, and that will hurt her more than the disease itself.  I was able to pick-up on my moms feelings, and felt like I had to be strong for the both of us, which made some of my days even harder. 
If I can suggest to you that you bring up the idea to her about starting a journal with her feelings.  For example, if she writes down just one word  about her feelings, such as 'scared', you would ask 'why are you scared', or 'what is scaring you'.  Then share and find the answers to her questions and concerns together. 
Another thing to remind her of is that she is not alone in this world.  She can live her life, go to school and raise a family. Many people have proved that the disease will not take over a life.  I haven't let my Crohn's control me, I am now 23, getting married, have a Bachelors degree and couldn't be happier with my life.  I have no doubt that she can do the same b/c if we were made strong enough to live with this disease, we were made strong enough to become anything we want.

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 9/15/2007 11:19 AM (GMT -7)   
The bright side of being diagnosed young is early intervention. Hopefully hers was caught before it did much damage. I knew I was sick from age 13 to age 21 but I wasnt officially diagnosed until I was on my own. I too was told I had acid reflux and had been seeing a GI but he was missing all the obvious symptoms. Ever since I started treating it (4 pentasa, 4 times a day [asacol didn't do much for me], hyoscimaine PRN, and still taking nexium and birth control) I have been soooooo much healthier. I did have one big flare and took entocort but it really got it under control. My advice to you is to find out what your daughters major CD issues are. Mine were diarrhea and urgency. I didn't realize that going to the bathroom so urgently was abnormal. But, there were days I told my mom "I cant get on the bus until after I poop or else I wont make it all the way to school." If I couldnt take the bus she would say I could stay home and I would get mad. I just wanted a ride to school. Once I was there I would be fine, I just couldn't be without a bathroom for a whole hour (the length of my bus ride.) Luckily in high school I stopped taking the school but and got rides until I got my license. Field trips were also scary for me because I was stuck on a bus w/ all my peers. I never really told my parents how much it sucked for me. Had they known, maybe they would have drove me. I hope this helps your daughter a little!
25 Year old married female.  Diagnosed w/ CD 2 years ago, IBS for over 10 years before that, which was probably the CD.
 
I started getting a ton of junkmail after putting my myspace profile link on here.  Im taking it off but if you want to contact me just email me and Ill give you a link to my myspace.  Sorry!


becjules
New Member


Date Joined Sep 2007
Total Posts : 2
   Posted 9/15/2007 2:38 PM (GMT -7)   
thanks for everyones replys we went to the doc. this thurs. 9/13  he put on on a another med called pamine he is worried that her crohns might be getting worse when he did the scope it was only in 1 part of her large intestine i asked what part on he said the something that started with a c sorry not sure of all the names in the large intestines ever since she had the scope done and started meds i have seen sighs of crohns as before i did not because of not thinking she had it we have to go back in a month and if her stomach pains don't stop he is going to put her back on the steriods which at the beginning he only had her on it the first 10 days but he fills like she is worse now the pain she has in her stomach breaks my heart because she will ball up in the floor crying she has never done this before the mes. i know it's not the meds causing this but i just di not see any of this before or maybe i did and did not relize it plus she is on meds for acid reflux thats the reason we went to a gi doc. she has been on different ones and she is now on prevacid that seems to work best the only thing they i have seen that causes a flare up is caffine since june when we first went to the gi doctor he told me to take her off and i did but about 2 weeks ago we was at church lunch and they did not have anything without caffine so i let her have some bad mistake the next moring she stayed in the bathoom for 30 mins. crying so for this to be so long but just wanted to give a up date plus did anyone have these problems after they started the meds thanks everyone Andie's mom

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/15/2007 3:57 PM (GMT -7)   
Hi The part you mentioned is probably the cecum that is one of the parts I had inflamed it is around the appendex .Some people don't do well on the sulfa drugs.It is very helpful not to give in when we want foods that bring on the pain and it took me awhile not to do it I guess my 2 hospital stays brought me around to low roughage diet and I don't have pain now. The pred does work fast but is hard on a person.If her pain gets too bad I would take her to the hospital sometimes they can get the CD under control there and have meds to releave the pain. I know it is hard for you but keep trying to get something worked out with her GI and give her our love we"re all thinking of her. lol gail
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 11, 2016 5:07 AM (GMT -7)
There are a total of 2,736,273 posts in 301,365 threads.
View Active Threads


Who's Online
This forum has 151457 registered members. Please welcome our newest member, jim1909.
147 Guest(s), 3 Registered Member(s) are currently online.  Details
hypoHashimoto, ceecee600, Jozuck12


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer