Mother of 12 year old with Crohns.

[DebB]

Hi everyone, my sister found this fantastic forum which is great I don't think that I will feel so alone now with this incurable disease that my son has to endure every day. Sam was diagnosed with Crohns in 2005 at the tender age of 5. During that time the disease has never really been under control, even after numerous types of drugs. In November 2010 Sam suffered with the worst flare up yet and had 5 months off from school, which was horrendous had he had only just moved up to senior(high) school in the September. It was decided for Sam to start a course of the Infliximab treatment which involved visiting the hospital once a month to have this infusion. Sam has now had 4 infusions and seems to have improved slightly. The best part is that he actually enjots eating which is a first, the weight gain has not been massive but there has certainly been an improvement in his weight. Unfortunately his growth is still tiny and even though he is 12 he is weraing age 8 clothes and looks 8. A prime target for school bullies , which has also been an issue. My concern at the moment is that he says that he has had an enough and does not want to be here any more. I think he may be suffering with depression, which is hardly surprising. Does anyone else out there experienced depression and how have they dealt with it. Any advise appreciated. Thanks.

 

[ameslouise]

Hi Deb and welcome!

I feel for parents of young kids with Crohns and IBD in general. It's such a tough road for them especially when they suffer growth problems and don't look their age. As parents, wouldn't we all take our child's pain and suffering if we could? I am 43 and my mom still cries and worries about me!

You will find a lot of great people here, tons of information and good advice. If you haven't already found the threads for parents of kids with IBD, hop over there (in the General IBD section) and you will find so many kind people that have been thru everything you are going thru now.

Good luck, I hope Sam continues to see improvement on the Remi.

-Amy

 

[xJillx]

Hi Deb! I am so sorry to hear your son has gotten little relief with treatment up until recently. I hope Remicade continues to help improve your son's health; it has done wonders for so many on here.

And I certainly hope your son's bullies would give him a break! Being picked on is an added stress he really doesn't need. Perhaps it would help for your son to speak with someone with how he is feeling, especially if he is exhibiting signs of depression.

Good luck, Deb, and welcome to the forum!

 

[AZMOM]

Hi Deb. We're glad you are here! There's a parents and caregivers page too that you might want to check out.

I hate to hear that your son has had such a rough few years and hope the Infliximab can give him a much needed growth spurt!! Love his heart..... I don't think the depression is unheard of at all, especially with a chronic illness. Do you all have a support group? Does your son know any other teens with IBD? I'm grasping at straws here but even at Claire's age, she takes a lot of comfort in knowing she isn't "alone".

Big Hug,

J.

 

[Dexky]

Welcome Deb!! What meds has he tried to this point? I can't imagine 6-7 years with so little relief for him! I know that must have been incredibly hard on all of you. I hope the Remi is his magic bullet!! Things sound hopeful!

My son essentially missed out on a year of growth when he was ten but has grown considerably since last fall. If the Remi does work for your son, I think you'll likely see a rapid growth spurt. Hoping for the best for him Deb!! Stick around and let us know how he gets on!!

 

[Mtchflknr]

Hi Deb,
My names Mitch i am now 20yrs of age i was diagnosed with crohns when i was 9 yrs old its has been a tough ride but there is hope.
When i was young crohns was very had to deal with, jumping back and forth on different meds never seeing long time results and still experiencing bad flair ups. I found with crohns you must have an open mind to different methods sometimes meds work and they typically do but for how long... most of the side affects are horrible causing other problems you have to try to deal with.
the biggest change in my life came when i talk to a long time MD that had turn to natural medicine he had given me a stricked diet to follow it was not easy at all.

Being 10yrs old i was very sick not eating at all i weighed 67lbs and the doctors told me i probably wouldnt recover or grow much. my blood tests showed a quality comparable to a sick 110yr old person. I had know hope at all with the medication almost causing wost side affect then the crohns itself i was scared for my life.

Later that year i found the natural path doctor being desperat i had to try. It was amazing sticking to the diet plan off all other prescription meds things were looking up i grew 10cm in 2 months i had gained 25lbs and had the color and smile back in my face but there was still a lot of getting better to do. i stuck to the diet for quite a few years until i got older and started not to care as much.
Aug 2010 it was the wost it had ever been i am 20yrs old i rapidly lost wait in a 2 month period. the pain was indescribable unable to eat, sleep, or work the stress was just piling up on me i truly thought it would be the end. my weight was 112lbs i am 5'10" with a broad build. shortly after i got to my worst i checked into the hospital for heavy bleeding, i found out i almost lost half the blood in my body due to internal bleeding the doctors couldnt believe i was able to stay conscious i needed a blood transfusion fast and after i got that i was rushed in for surgery i recovered from surgery ok and got out of the hospital weeks later. But it was back to the diet from in the beging.

Today im at a healthy 175lbs with a heavy muscle build and a full appetite back. i am the happies i have ever been and will never take the seriousness of this desease for granted again
Theres is hope for you and your son Sam. I would really love for you to look into the natural forms of treatment aswel as they have turned my life around. if you would like to know anything about my diet or supplement i took please ask i have a lot of knowledge when it comes to natural meds.
I hope this makes you feel better and there is hope. One of the best things you can do for your son is be happy and let him know it as it is hard for a child to see there parents sad and because of the state of the desease worry and stress is one of the worst thing that can be encountered until he is in good health

 

[guest23]

Hi DebB,
Welcome to this forum. As a parent, I can totally relate to how you are feeling. My son was diagnosed at age 12 with severe Crohn’s. He was the first child to ever test drive Remicade back in the day. Last year, at age 25, he underwent a stem cell transplant and has not looked back since. (He wrote in the “treatment” section of this forum, “my stem cell journey” by Ziggy). I wanted to ask you if Sam has ever seen an endocrinologist for his growth? They can run a few tests, and discuss giving him growth hormone. It will only be effective as long as his growth plates have not fused – so he has plenty of time. I also know how it feels when your child is so young and innocent, and filled with such despair about this life. The best advice I can give you is what I did. I always put on a brave face in front of him. I always encouraged him, and reminded him about what great strides we are making towards a cure. Look at what these stem cell transplants have done. It saved my son’s life. When I look at the before and after transplant photos of Ziggy’s colonscopy, I truly believe that they are so close to nailing this disease. Hang in there Mom Just remember, when things get really tough, take it one day at a time, in baby steps! We are here for you.

 

[lilbit]

I was diagnosed at around 9 years old as well. I've definately been down the road of not growing or gaining weight. I too missed alot of school, mostly because I didn't want to go for alot of the same reasons your son does not. After an ungodly amount of steroids and not much improvement I was given 3 infusions of Remicade and have been pretty good and off meds until now at 27 years old. There is hope, but I know that dealing with this disease during puberty is very very hard.

 

[Dexky]

Hi DebB,
Welcome to this forum. As a parent, I can totally relate to how you are feeling. My son was diagnosed at age 12 with severe Crohn’s. He was the first child to ever test drive Remicade back in the day. Last year, at age 25, he underwent a stem cell transplant and has not looked back since. (He wrote in the “treatment” section of this forum, “my stem cell journey” by Ziggy). I wanted to ask you if Sam has ever seen an endocrinologist for his growth? They can run a few tests, and discuss giving him growth hormone. It will only be effective as long as his growth plates have not fused – so he has plenty of time. I also know how it feels when your child is so young and innocent, and filled with such despair about this life. The best advice I can give you is what I did. I always put on a brave face in front of him. I always encouraged him, and reminded him about what great strides we are making towards a cure. Look at what these stem cell transplants have done. It saved my son’s life. When I look at the before and after transplant photos of Ziggy’s colonscopy, I truly believe that they are so close to nailing this disease. Hang in there Mom Just remember, when things get really tough, take it one day at a time, in baby steps! We are here for you.

Your Zig's Mom !!!!! Please come back and tell us how he is! If you've already done so, I'm sorry I missed it! He has given so much hope to so many people on here. We all miss him but certainly understand why he would not want to spend a lot of his wonderful new time thinking about crohns!