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Crohn's Disease Support Group
A community of patients, family members and friends dedicated to dealing with Crohn's Disease, together.
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05/20/2008 11:49 AM
Momlisa1
Posts: 7
New Member

Hi Everyone,

I found out last Thursday that my 9 year old son has Crohn's. It was a very long few weeks as I watched my son lose lots of wieght and get sicker everyday. We were lucky enogh to find a great Doctor and hopefully he will get us on the right track. I wanted to join because I have heard horror stories and I need to know first hand from real people what to expect and just to know my son is not the only one. They say he is on the young side of this disease so if there is anyone else out there with a child or was diagnosed as a child I would love to chat about what to expect and what to do to help him with the pain.Does it ever go away? will he ever be his enegetic self again. I know these are all questions that I can ask his doctor but I hate to bother them everytime I think of something, which is almost every hour right now. Thanks for listening.

My son was seen last week and the Dr said all is going good. My son is getting better and even playing baseball again. He played 6 games in 2 days and didn't complain till the last one of leg pain, but with a little Tylenol and icy hot he was back playing the next inning. I take it day by day and and try not to think of the unknown, but hopefully since we did catch it early he will be ok. Thanks for everyones support.


We were having a good summer until a month ago and my son had a flare up. Fortunately I was watching him closely and he didn't get that sick. They increased his stomach meds but unfortunately he was at his last two week of steroid taper and he is now back to sqare one. I am hoping this is all taken care of now and his meds are regulated so we wont have to do this again at least not so soon.
I do have a question? Has anyone had headaches and has your doctor said it's related to the Crohns? He has started having them too. He's really looking forward to school and Fall Baseball, so hopefully life will be normal again for him.
Reply

05/20/2008 03:28 PM  Top
Signs
SignsPosts: 335
Member

Welcome to the group Momlisa, hope you will find the support you are searching for in the group. I sure hope your son gets better soon.

Previous discussions I participated in:
Introduction of Jody
bad Nut-trylite reaction
Hello

05/21/2008 06:01 PM  Top
DancinGrl
DancinGrlPosts: 48
Member

I hope your son feels better. I wasn't diagnosed till I was eighteen, but when I was in remission I had energy and played sports with friends. Welcome to the group. I hope this helps you.

05/21/2008 09:50 PM  Top
Sher
Sher
 
Posts: 9
Member

From one mom to another I would like to help if I can. My son was 8 when diagnosed with crohns.

05/21/2008 10:21 PM  Top
jodee102
Posts: 7
New Member

sher, is your son on a special diet?

Previous discussions I participated in:
Introduction of Jody
Diet

05/22/2008 10:20 AM  Top
Momlisa1
Posts: 7
New Member

Right now he is not on a special diet. He still is just on the steroid to get his immune system better, but they have said to let him eat whatever he wants besides fiber as of now. He lost 7 pounds in a week and a total of 12 in a year so I think they want him to get some of his weight back on. Thanks Lisa
My son was seen last week and the Dr said all is going good. My son is getting better and even playing baseball again. He played 6 games in 2 days and didn't complain till the last one of leg pain, but with a little Tylenol and icy hot he was back playing the next inning. I take it day by day and and try not to think of the unknown, but hopefully since we did catch it early he will be ok. Thanks for everyones support.


We were having a good summer until a month ago and my son had a flare up. Fortunately I was watching him closely and he didn't get that sick. They increased his stomach meds but unfortunately he was at his last two week of steroid taper and he is now back to sqare one. I am hoping this is all taken care of now and his meds are regulated so we wont have to do this again at least not so soon.
I do have a question? Has anyone had headaches and has your doctor said it's related to the Crohns? He has started having them too. He's really looking forward to school and Fall Baseball, so hopefully life will be normal again for him.

05/22/2008 10:24 AM  Top
Momlisa1
Posts: 7
New Member

That makes me feel alot better because he is having the most problems right now by not being able to play baseball. He plays baseball, football, and basketball and is on a USSSA baseball team, and his biggest fear is that his legs will always hurt and he wont be able to play again. Thanks so much Lisa
My son was seen last week and the Dr said all is going good. My son is getting better and even playing baseball again. He played 6 games in 2 days and didn't complain till the last one of leg pain, but with a little Tylenol and icy hot he was back playing the next inning. I take it day by day and and try not to think of the unknown, but hopefully since we did catch it early he will be ok. Thanks for everyones support.


We were having a good summer until a month ago and my son had a flare up. Fortunately I was watching him closely and he didn't get that sick. They increased his stomach meds but unfortunately he was at his last two week of steroid taper and he is now back to sqare one. I am hoping this is all taken care of now and his meds are regulated so we wont have to do this again at least not so soon.
I do have a question? Has anyone had headaches and has your doctor said it's related to the Crohns? He has started having them too. He's really looking forward to school and Fall Baseball, so hopefully life will be normal again for him.

05/22/2008 10:34 AM  Top
Momlisa1
Posts: 7
New Member

Thank you so much for responding because I would love to hear your sons story. Everyone keeps telling me he is on the young side of this disease and I haven't heard of any other kids that have it, which is scary. How old is your son now? Did Crohns have a huge impact or since he was little did it not seem to bother him as much? How did you explain it? I have tried and he understands most but theres just some things that I think he just doesn't understand. Is there anything that you have found to make the pain better? How often did he have flare ups? As I said thanks so much. Lisa
My son was seen last week and the Dr said all is going good. My son is getting better and even playing baseball again. He played 6 games in 2 days and didn't complain till the last one of leg pain, but with a little Tylenol and icy hot he was back playing the next inning. I take it day by day and and try not to think of the unknown, but hopefully since we did catch it early he will be ok. Thanks for everyones support.


We were having a good summer until a month ago and my son had a flare up. Fortunately I was watching him closely and he didn't get that sick. They increased his stomach meds but unfortunately he was at his last two week of steroid taper and he is now back to sqare one. I am hoping this is all taken care of now and his meds are regulated so we wont have to do this again at least not so soon.
I do have a question? Has anyone had headaches and has your doctor said it's related to the Crohns? He has started having them too. He's really looking forward to school and Fall Baseball, so hopefully life will be normal again for him.

05/22/2008 10:35 AM  Top
sallie
 
Posts: 106
Member

My son was about 23 when it started, but would not go to a Doctor till about the age of 25. He lost about 30 pounds within a month....but as I said, would NOT go till about 2 years later.

My understanding is that normally the disease strikes at an older age than even in their 20s, but children as young as 8 and 9? That is so awful. I hope that research and new medical information will assist greatly. My son is on some sort of medication, but eventually may end up having to do the remicaid infusions. I feel so bad for all of the sufferers. Blessings to you all.

The greatest good you can do for another is not just to share your riches, but to reveal to him his own. Benjamin Disraeli, 1804-1881

Previous discussions I participated in:
Hi all of you!!
Prayers Needed
do all bp cheat

05/25/2008 08:42 PM  Top
Sher
Sher
 
Posts: 9
Member

He's not on a special diet right now, he can't seem to eat anything, He's going on Remicade, any one been on it, it scares me.
Reply

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