Thank you

[Canadianmomto4]

Hello to all of you moms, dads and guardians of kids with the various IBD's. I have been reading this site for a week now and have been impressed with the support that you have shown each other. As a result I have decided to join you
Very briefly I have 4 kids ranging in age from 9 months to 13 years old. My eldest has this terrible disease of Crohns and was diagnosed a year ago. He has had many other challenges as well in his life. He is currently in a long flare that has been awfully brutal. He has been sick now for over 2 months and lost +25 lbs.
I will post more soon but wanted to start will you all tonite

 

[Devynnsmom]

Hello and welcome to the forum I found this place a few mos ago and it has been a great support group. I have four children as well ranging in age from 10 years to 22 years old. My 10 year old was unoficially diagnosed with crohn's in Dec 2009 at 8 years old, and then in Mar 2012 at 10 she was diagnosed with mild to moderate ulcerative colitis. She is currently on the couch feeling rotten. She's been flaring since Jan.

 

[Sascot]

Hi and welcome. Sorry to hear about your eldest - it is horrible to watch them while they are hurting. Hope the docs are trying hard to bring the flare under control!! My son is 13 as well - hard to see them going through puberty and deal with all this at the same time!

 

[Twiggy930]

:welcome: Canadianmomto4

Sorry to hear that your son has been unwell but glad you have joined the forum. Yikes, 25 lbs on a 13 year old must be tough. My son lost around 17 lbs earlier this year just before he was diagnosed. Thanks to prednisone and enteral nutrition he has gained it all back. Have you tried EN? Do drop us another note and let us know how he is doing.

I hope to see you around in the threads!

 

[jmckinley]

Hi Canadian Mom!

Welcome to the forum. So sorry to hear that your son is battling Crohn's also. My son is 14. We have also been battling a flare since November 2011 with very little luck at remission. It is so frustrating to see this take hold and not be able to fix it or relieve their discomfort! You'll find great support here. You are not alone and there is some great advice and encouragement to be had!

:hang:

 

[AZMOM]

Welcome. We're glad you're here but hate that your son is struggling. Is he on steroids now?

J.

 

[LilyRose]

Just to say 'Welcome'. I am so sorry to read that your child has been so unwell. It is so hard to see your child in pain and illness and not be able to fix it. I hope your doctors can soon bring the flare under contrlol and that it will be followed by a long, long remission.

Take good care of yourself, it is definitely the time to call in all the help you need as a family to get through this difficult time.

Let us know how you are going.
Best wishes,
LilyRose

 

[Canadianmomto4]

Welcome. We're glad you're here but hate that your son is struggling. Is he on steroids now?

J.

Hi there, no he is not taking steroids this time as he is refusing to. My son does not like the negative side effects which for him are the moon face and large weight gain. He is slowly coming around to the idea of doing another course although I'm concerned that this will be the fourth round this year. The teen component to helping your child manage this disease is for us a major challenge.

 

[Canadianmomto4]

Hi Canadian Mom!

Welcome to the forum. So sorry to hear that your son is battling Crohn's also. My son is 14. We have also been battling a flare since November 2011 with very little luck at remission. It is so frustrating to see this take hold and not be able to fix it or relieve their discomfort! You'll find great support here. You are not alone and there is some great advice and encouragement to be had!

:hang:

Hi there I'm wondering how other moms and dads are dealing with the teen component of crohns. My son refuses to take meds, refuses to eat or drink Boost, is very angry at being sick and doesn't want to talk about his poop to anyone!! Further he has not told any of his friends that he is sick. Hhhheeellllpppp!!!!!

 

[crohnsinct]

Ah yes! As teens they think they are invinsible and half of our battle is convincing them they sometimes need help. A delicate balance for sure. Welcome to the forum and best of luck balancing your teens need for control and the need to control this disease!:kiss:

 

[crohnsinct]

I see you posted at the exact same time I responded. As for the talking about poop...we just did away with the talking. I made a journal for my daughter. It has date, time and lists poop: formed...not formed....amount: small.. medium large...mucus: little.. a lot and blood: little.. medium.. a lot. Oh yeah and pain..description. She fills out date and time and circles the appropriate descriprion. No discussion needed and all the log keeping is done for me!

As for meds...well she gets Remicade as her main treatment so no negotiation there..get in the car, we drive there and they stick her. But Prevacid, vitamins, D3, Enteral Nutrition etc I don't have a problem with but she is only 12. I think feeling better is usually enough motivation to take the meds. Although we almost lost her during the 6th week of exclusive EN when the docs office was dragging their feet on deciding whether or not she could add food. It was awful. Perhaps have doc speak with him and stress the importance. My daughter got "spoken to" by her derm about picking at her eczema and she was mortified. Never did that again.

Good Luck

 

[jmckinley]

Ryan is actually really good about his medicine. He has felt about as bad as he could feel and doesn't want to go there again if he can help it. Pain seems to be a good motivator for him. The GI really praises him too for being a model patient. That helps. He has been diagnosed for 3 years, so it has become a part of who he is. He's not always happy about it, but I am very proud of his level of maturity about it. He has embraced it as just a part of his life.

As for talking to friends, he hasn't told any of his either. They know he doesn't feel well sometimes, but he doesn't share any more than that. I would never push that. We have learned how quickly friends turn and it can get ugly.

About the bathroom, our way around that is that he goes...if all's well, he just comes and tells me its "normal". If anything is wrong, he just tells me to go to the bathroom and goes to his room. No discussion really involved. In the beginning we talked to him about how we knew it was uncomfortable to discuss, but we really had to know so we could get him treated if he needed it. We let him decide how he wanted to handle giving us the info. I think that's why it works, it was his idea.

Look up the stages of grief. Anger is one of those. I think it's a part of the process. He is mourning the loss of the "normal" person he wants to be. I think he will just need to work through it. We have to work through it as parents too. Maybe meeting another teen with Crohn's would help.

 

[DustyKat]

Hi and :welcome:

I'm so very sorry to hear about your boy Mom...:hug:...what a heartbreaking time for you all.

I have two children with Crohn's, a daughter diagnosed at 14 and a son diagnosed at 17. You aren't alone hun and you will find many, many wonderful and knowledgeable members, parent's and sufferers alike hanging out here and ready to give a helping hand.

I think this disease has it's own unique set of challenges depending on what decade it decides to rear its ugly head. The hardest thing I found to navigate was the communication aspect of things which I think then encompasses most of the other teenage issues.

I found I had to choose my battles because it is such a fine line between saying nothing and saying too much. I eventually settled on discussing with them the most important aspects of the disease and then with the rest providing them with the information to do with what they wanted. I also had the doctor emphasise to them what was important to know. I made it clear to them that they could come to me no matter what and as hard as it was I had to bite my tongue time and time again and stop asking every 5 minutes...are you okay. They have come to me when it counts.

Keep it simple, explain to him the need to get this disease under control and what will happen if he doesn't, be straight to point and answer honestly. Also tell him that there is light at the end of the tunnel and things will return to normal but he needs to take control in order for that to happen.

Good luck hun and keep us posted!

Dusty. xxx

 

[Tesscorm]

Welcome to the forum! I'm sorry your son isn't well... just heartbreaking for them and for us to see them like that!

You've been given some great advice! I really can't add much more :ghug:

I hope your son does come around, it is such a difficult age to come to terms with this disease. He may not say he's interested but, perhaps just mention that there is a teen forum here - he may just drop in to see how other teens cope and may even ask his own questions.

Good luck, thinking of you... :ghug:

 

[Farmwife]

Hi and welcome,:thumright:
so sorry to here about the trails. You've already got good advice from some wonderful people. I'm glad you found your way here. Hang in there it will get better.

:soledance:Farmwife