Mixed up mother

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youngheart

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mixed up mother

My healthy 8yr is no longer healthy. After experiencing much abdominal pain since Jan 2008, loosing weight, high tempertures many times a day and Family doctors saying it's normal for an 8yr to have abdominal pain...3 wks ago she was diagnosed with Crohn's. It has been a roller coaster of emotions & physical set backs ever since. We have been struggling with both, just to get through each day.
Prednisone(8@5mg a day) and as of last wk down to 7 - pain has started up again. She wants to be "normal" again and expresses that almost daily with tears. The other day she said she hated herself. She is normally a very social,happy,fun loving child with a ton of wonderful little friends. She has been a good student & with outside activities that she has been unable to participate in mths.
I am visiting grocery stores daily and walking in circles waiting for something to jump out from the shelves saying "This will be okay for your daughter to eat right now, she will love it and it will make her all better". Of course this hasn't happened.

Even though I know some have a much worse experience than us, when I see my daughter in tears and saying the things she is saying, it's hard to remember to count our blessings.
This has turned our lives inside out , I am lost and overwhelmed to say the least.
Anyone with any idea's of food choices while her Crohns is so active, would be very much appreciated. Anyone with any tips at all in any area's, would be very much appreciated.
I have talked to lots of friends with their own idea's but from a Mother watching her child go through this, none of them understand unless they walk in my shoes.So as grateful as I am for all those who have given idea's/tips, thus far I've just found it overwhelming and too much that hasn't helped. I know they mean well.
So any Mother's out there going through a similar situation, I welcome to hear from you.
I'm new to this sort of internet support so please forgive me if I've messed up with writing my story. And.....I don't know where to start from with regards to my story.
Sincerely
Young Heart
 
hi youngheart. i know you're new, & i'm normally not this forward.. but i want to send you & your daughter a great big hug ((HUG))

ok, that done - i've just found this page of the NACC website which may be of some help... http://www.nacc.org.uk/content/services/parents.asp

regarding searching for something appetising & beneficial for her to eat.. i'd say let her have treats that she fancies, & puddings/jellies - anything which isnt hard to digest. unless she has an intolerance to bread, sandwiches, or toast with jam/honey are a good standby, and bananas too. fizzy drinks are not a good idea, neither is pure fruit juice, but cold milk or hot chocolate made with milk would be fine, & nutricious.

i'm totally understanding the lost feeling - this is so hard for both of you, but hopefully now that she has the diagnosis, and the physician team caring for her, it wont be long before she perks up.

rest is important when crohns is flaring, plus those fevers are debilitating. knowing how most kids hate having to go for a lie-down in the day, maybe try to encourage her to cuddle up with you on the bed/sofa, with a story book, at least once a day.

i'm glad you joined us - i'm sure everyone here will be able to contribute with tips & support, & hopefully help you through this bad patch.
 
Thankyou for your kind & encouraging words. I am lost on this site. Don't know what the Zoint site is all about, don't know how to get my replies but accidentally found yours. I'm not an internet person but need to learn for the sake of my daughter. Forgive my ignorance on this site for I am muddling my way through. Thankyou again for your tips.
 
YOungheart, my heart goes out to you and your daughter, there is nothing more painful (to me and had a child natural, piece of cake) than crohns. I use Rice milk, and keep her foods bland, and fruit juices are a no no, just like dingbat said. We know what we are talking about. To help you as a quick reference there is a book Called "crohns's disease and Ulcerative Colitis, second edition...the author is Fred Sailbil, MD. It will help you to understand and hightlight the areas that your daughter is having problems with, keep a diary, and check her poop, it tells the story... I know TMI but this disease is gross to talk about to some people but not us, you can tell us everything. Not every med works for everyone, trial and error. Try to keep her spirits up, because it is hard to live this disease. I couldnt imagine my daughter going thru this, but as my husband says, there is nothing no one can do for us, except be very supportive, no matter how it tires you out (and it will) think of what she has to endure as well. We all welcome you here, ask question or just vent,,, you need help too. Take care, my prayers are there for you.

Penny
 
Hi Youngheart. My heart goes out to you. I wouldn't want my children (grown now) to get this. hope you stumble upon this thread again. Here is something you can do to make it somewhat easier to stay in touch. You'll see Thread Tools at the top. Click on that, and then click on the Subscribe to this Thread that will show up in the drop down menu. That will take you to a page where you can fill in your e-mail address; then choose from another drop down menu whether you want no e-mail notifications, or immediate, daily or weekly ones. That should give you an e-mail notice IF someone has responded, depending on the frequency you set it for, and a link to take you to the subscribed post.

There is also a FAQ section where you can find the answers to Frequently Asked Questions (which is what FAQ stands for.. hope this info doesn't come across as being condescending.. you say you are a new comer to net support, and definitely a newcomer here.. so I thought it best to cover everything vs not and simply assuming you knew what FAQ stood for, OK?) Anyway, the FAQ is full of info on the mechanics of using this site, not on IBD itself. I'm sure you'll find people are more than willing on here to answer questions about either...

As for diets with IBD.. Getting kids to eat whether healty or not isn't easiest game in town at the best of times. My 1st suggestion is you start keeping a daily diary... EVERYTHING that goes into your little girl.. foods, beverages, meds, supplements, condiments, treats, candies... well, the list goes on N on. Track how her body reacts... frequency of bathroom trips, pain levels (thats' a tricky one - she's only 8 - you'll probably have to fine tune your observation skills AND try to come up with a scale... how long she's curled up, how long she moans... whatever. It's going to be subjective on your part, thats pretty tuff).. energy levels... that sort of thing. Over time, you'll be able to decipher what the most likely culprits are in her diet to cause immediate distress. These we've come to call 'trigger' foods. foods that more often than not trigger immediate extra pain, naseua or diarhea. Those you can eliminate, limit or even modify.

Like, for example, I love french fries (chips to my UK friends).. but i'm on a low fat diet (amongst other things). Fried foods, many saturated fats cause issues.
I now make french fries without frying, or grease, or oil. I make them in a little toaster oven. Potatoes offer a good water soluable source of fibre and can be a way to bind/slow the bowel if diarhea is a problem. If you can arrange to get a consult with a good, IBD trained/experienced dietician or nutritionist, that is a way to look at the good, better, best food/diet choices for the long term. Fact is our GI tract is under assault, we need to try to limit the stresses we put on it. The colon we save could be our own, and many foods won't do immediate harm... just slowly over time. you can also research IBD diets, beg/borrow or steal a good IBD diet book. It's a learning experience, and at some stage you will need to pass on the knowledge you gain to your daughter. Other things you may want to include in the diary are things like.. nature/consistency of stool... any fevers N how hi... any other symptoms, rashes, boils, dry skin..
It makes a handy reference when consulting with doctors, specialists, nurses.

with it you can state/show... 'she is slowly improving, but having issues with..'
OR 'her condition is deteriorating, despite her taking these meds every day...'
And in it you can write down any questions to want to ask before the visits so you don't forget them during the visit... plus jot down all the responses, who said what... that sort of thing. A record like this can prove invaluable later on.
 
youngheart said:
Thankyou for your kind & encouraging words. I am lost on this site. Don't know what the Zoint site is all about, don't know how to get my replies but accidentally found yours. I'm not an internet person but need to learn for the sake of my daughter. Forgive my ignorance on this site for I am muddling my way through. Thankyou again for your tips.
Click to expand...

you're doing fine with the forum - dont worry :)

regarding posts in this thread, you can do it the way kev suggests, or you can also click above where it says Quick Links, and then click on Today's Posts, which will show you all the new recent threads that have been posted in.

and - i havent figured the zoints system either ;)

i'm not sure which country you're in, but the NACC link i posted above is the UK-based National Association for Crohns & Colitis.
 
and i'd like to add that maybe you could read thru some of the things on here with your daughter. i've read thru a couple of hundred posts here so far and havent found a single thing i wouldn't let a child read.

the people here are incredibly helpful, insightful and we all know exactly what your daughter is going through. its an amazingly caring family that i have recently found here.

best wishes to your family!

p.s. if your daughter is having a bad day, and loves animals, get her to wander thru http://cuteoverload.com/ . it has got to be the cutest website ever for baby animals! always brings a smile to my face:)
 
oh, forgot to mention, please be wary of any of the website that show you what to buy to cure crohns or ulcerative colitus.

none of us would've joined this site if there was a cure.
 
Jed Was this a typo? Did you mean perhaps "i've read thru a couple of hundred posts here so far and haven't found a single thing i WOULDN'T let a child read"??

I think we all strive to keep this a family friendy website, with the sole exception being the Lounge.. but a person has to be over 18 to gain entry there...

jed said:
and i'd like to add that maybe you could read thru some of the things on here with your daughter. i've read thru a couple of hundred posts here so far and havent found a single thing i would let a child read.
Click to expand...
 
Kev,
Thankyou for your message of yesterday. I tried subscribing to the thread, using your instructions, but it says I do not have permission to register? Your message was very informative & I appreciate. I'm still muddling my way around, I am not computer literate so excuse my ignorance. I need to learn this computer stuff for no other reason but to find help for myself but especially my daughter. Thankyou for your help & concern. By the way, I too am originally from East Coast - Cape Breton.
Young Heart
 
Hello youngheart and welcome to the forum.
I'm just going to say how sorry I am
that your child has been diagnosed with Crohn's
and I'm sending you the biggest hug ever!

I'm hoping they get her on a medication that works for her
and she gets feeling better soon.

A good Crohn's diet is a big help also.

Once again welcome...you will find everyone here most helpful.

I'll be watching and waiting to hear from you again...

Heart hugs~Nancy
 
Hello to you as well. Thankyou for your well wishes. My daughter is on prednisone right now but still experiencing pain. I am beside myself as to what to feed her at this point. Shakes she's not interested in and try to stick to easy to digest stuff but she's 9(as of Fri) and that's a tough one. She's also going through some emotional stuff regarding her new found illness. It's heart renching to watch and difficult at times to count our blessings. Not sure how much time I'll spend on this forum but am thankful for the responses I got thus far. Time in my life is very limited but I know I must get more educated and receive feed back from people like yourself.
Again thankyou. I too am from Ontario, Kitchener to be exact.
Young Heart
 
Oh... Another Cape Bretoner... I'm from there... mothers family from Sydney Mines.. I was raised in various parts... but all within Cape Breton county. Since the subscription didn't take, send a PM (private message) to our Administrator, Mikeyarmo... I'm a moderator, but a problem like that is outside of my scope..

PS What part of the island did you call home? How long since you left there?
 
I was wondering if you had tried to get your daughter to drink Ensure..?
It has everything one needs in a can and the chocolate one is quite good.
When I was first diagnosed and on prednisone I practically lived on Ensure.

I'm a bit further south than you...
I'm in Windsor. :)

And hello Kevin!! :smile:
 
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I think the Ensure idea is a good one. Personally, I could never gain a taste for it, but my younger brother (about the same age as your daughter), absolutely loved them, not that he needed Ensure. You could even blend it with ice cream, if she can handle it, to make it more appetizing and help her maintain her weight.
 
My heart goes out to you. I too am the mother of a Crohns child although significantly older than your child (he was diagnosed at 19 and is now almost 21). I wish I could give you words of wisdom to make it all better, but sadly that is not the case. I can tell you that the support and information I found on this forum helped me tremendously, especially during the worst flares my son was experiencing.
It is important to learn all you can about this sometimes baffling disease, and this website along with its connecting links can be invaluable! It was also very important to me to find the best medical care possible-meaning top notch specialists in Crohns-this gave me a measure of peace of mind in terms of trusting diagnosis and treatment options. You may want to investigate what is available in your area, and the advisability of seeking second and even third opinions if necessary.
As far as diet is concerned, there were times last year when due to a partial obstruction, my son could eat very little solid food. Ensure was a staple-luckily it comes in many flavors, and according to my son the colder the better as far as making it more palatable. Adequate nutrition is a concern, even more so with a young child who is still growing! My son found simple carbohydrates the easiest to digest during difficult times.
Finally, although yor child is young I am sure you realize the importance of involving her in her treatment as much as possible. Kids surprise us with the amount they both understand and can handle!
If there is ever anything I can do, please do not hesitate to ask.
All my best wishes for a speedy remission
Sincerely,
Ramona
 

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