My 11 year old daughter was diagnosed formally today with crohn's disese by colonospy and endoscopy. She has sores all the way down her esophagus and at where the small intestine meet the large entistine. She has been experiencing abdominal pain, diareah, eye problems, mouth sores and weight loss. She is down to only 48 pounds. Our gastro doctor is putting her on 20mg of prednisone once daily to get the flare under control. He gave us the choice of putting her on Remicade infusions or 6mp purinethol. Research on both medications have made me sick to my stomach. Because of her age she has an even higher risk of cancer and fertility issues. The side effects seem more painful that the pain that she is already experiencing. To put it mildly, I am terrified, confused and completly overwhelmed. I ordered the full IBD kit from Heather and it came in today. I am a beliver in natural medicine and wonder if it would be a better solution. My doctor has said that diet does not play a factor, but if she eats something that irritates her, to cut it from her diet? Becuase she is so young, there is VERY limited approved medical treatments for her. As far as I understand, those are my only choices. Please, anyone with a young child or any advice, please help me. I have never been so scared in my life. Thanks for taking the time to read this.
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11 year old daughter diagnosed with crohn's
- Thread starter mommyto3kidos
- Start date
DustyKat
Super Moderator
Hi and :welcome:
I'm so sorry you had to find yourself here and what a sad day for you.
There are many, many sufferers and parents here that completely understand your fears and concerns regarding medications. We have a parents forum you may like to have a browse through......
http://www.crohnsforum.com/forumdisplay.php?f=49
Unfortunately Crohns disease presents differently for everyone and everyone responds differently to treatment. Diet is certainly controversial and many in the medical profession don't believe it plays a role in the disease process at all. Sufferers are varied in their beliefs as well. I personally don't believe that diet alone will control my children's disease, however I do believe that it makes a difference to how my daughter feels on a daily basis and many here do find that it helps alleviate symptoms when they are flaring. Liquid diets have proven in many research studies to be just as effective, in children, in putting someone into remission as Prednisone. There are many that swear by natural medicines as well and you will see in the signatures of many members supplements that are taken as a way of alleviating and keeping symptoms at bay.
Both of my children have CD and it hit them hard, fast and severely so in my own experience I don't think a natural route would have worked for them. I saw first hand what untreated Crohns could do and it was awful, so in my case the decision to go down the traditional treatment route wasn't difficult to make. It doesn't mean I am not scared about the side effects of these medications but it was the lesser of two evils. Brian'sMom has an excellent link regarding medications and the risks involved......
http://www.ccfa.org/webcasts/Risk%20and%20BenefitsTranscript.pdf
My daughter had surgery at 14 and has been on Imuran since that time and has also been in remission. Is it the Imuran? I don't know but she has not had any obvious side effects during this time. My son is also on Imuran but it is only early days yet with him.
I think it is well worth while keeping a food and symptoms diary for your daughter, perhaps this may give you some ideas......
http://www.crohnsforum.com/wiki/Diary-Inclusions
I hope you stay around. Please browse the forums and make use of the search function on the tool bar. If you have any questions just ask away. Good luck, keep us posted and welcome aboard!
Take care, :hug:
Dusty. xxx
I'm so sorry you had to find yourself here and what a sad day for you.
There are many, many sufferers and parents here that completely understand your fears and concerns regarding medications. We have a parents forum you may like to have a browse through......
http://www.crohnsforum.com/forumdisplay.php?f=49
Unfortunately Crohns disease presents differently for everyone and everyone responds differently to treatment. Diet is certainly controversial and many in the medical profession don't believe it plays a role in the disease process at all. Sufferers are varied in their beliefs as well. I personally don't believe that diet alone will control my children's disease, however I do believe that it makes a difference to how my daughter feels on a daily basis and many here do find that it helps alleviate symptoms when they are flaring. Liquid diets have proven in many research studies to be just as effective, in children, in putting someone into remission as Prednisone. There are many that swear by natural medicines as well and you will see in the signatures of many members supplements that are taken as a way of alleviating and keeping symptoms at bay.
Both of my children have CD and it hit them hard, fast and severely so in my own experience I don't think a natural route would have worked for them. I saw first hand what untreated Crohns could do and it was awful, so in my case the decision to go down the traditional treatment route wasn't difficult to make. It doesn't mean I am not scared about the side effects of these medications but it was the lesser of two evils. Brian'sMom has an excellent link regarding medications and the risks involved......
http://www.ccfa.org/webcasts/Risk%20and%20BenefitsTranscript.pdf
My daughter had surgery at 14 and has been on Imuran since that time and has also been in remission. Is it the Imuran? I don't know but she has not had any obvious side effects during this time. My son is also on Imuran but it is only early days yet with him.
I think it is well worth while keeping a food and symptoms diary for your daughter, perhaps this may give you some ideas......
http://www.crohnsforum.com/wiki/Diary-Inclusions
I hope you stay around. Please browse the forums and make use of the search function on the tool bar. If you have any questions just ask away. Good luck, keep us posted and welcome aboard!
Take care, :hug:
Dusty. xxx
Welcome Mommy! All the parents on here can say we've had those exact fears about meds. They all come with a list of possible side effects a mile long!! My son has been on 6mp for over a year w/o any bad side effects. Apparently, it never got him in full remission(though he's felt great for most of that time), so we are starting Humira tomorrow. The point is, after much hand-wringing, we accepted the risk with pred first, then with 6mp and now with Humira. Before these meds, he was very poorly and falling behind his school mates on the growth charts and had no energy but now he is (for the most part) just one of the guys. I'll take things the way they are now over how they were before his dx any day!!
I know they are huge decisions to make and they scare the heck out of you! 20 mg pred is a low dose if memory serves so that should be of some comfort. It really worked fast to get my son's disease under control. If it was me(and that's really all any of us can say), I'd want to get her under control quickly then begin to experiment if you still want to. Good luck with whatever you decide and please keep us posted!
I know they are huge decisions to make and they scare the heck out of you! 20 mg pred is a low dose if memory serves so that should be of some comfort. It really worked fast to get my son's disease under control. If it was me(and that's really all any of us can say), I'd want to get her under control quickly then begin to experiment if you still want to. Good luck with whatever you decide and please keep us posted!
xJillx
Your Story Forum Monitor
Hi Mommy and welcome! I am so sorry about your daughter's diagnosis. It is a scary disease and treatment can be worrisome, as well. There is a lot of information on here and parents who are in the same boat as you. Do some homework and hopefully it will help you make a decision that works for you and your daughter. I wish you and your daughter luck and hope she will start feeling better soon.
this is devastating news and i cant imagine how hard it is going to b for all of u to cope with the diagnosis crohn's disease is an absolute bastard and i find affects me more emotionally than physically. the best thing u can do for ur daughter is to b there for her when she isnt coping as im sure u wud
send her my best wishes
xx
crohn's disease is an absolute bastard and i find affects me more emotionally than physically. the best thing u can do for ur daughter is to b there for her when she isnt coping as im sure u wudsend her my best wishes
xx
So sorry to here this, a current form of treatment I am on is a liquid diet, I recommend you ask your doctor about it because there are no nasty side effects- however I don't know if it works better depending on where the inflammation etc is, I know mine is in a different place to that, I hope this helps you.
ameslouise
Moderator
Hi there and welcome!
Sorry to hear about your daughter's suffering and diagnosis. I can't add much more than Dusty, Mark and the others have already said. You'll find lots of good advice and info on here, especially from the other parents of kids with IBD.
Good luck - hope you find something that works. I am a big fan of natural remedies as well, but *from my own personal experience* you should be open to all options. Certainly alternative therapies have worked for many, but they are as varied as the pharma options. Perhaps a medically supervised elemental diet or TPN is something you can look into.
- Amy
Sorry to hear about your daughter's suffering and diagnosis. I can't add much more than Dusty, Mark and the others have already said. You'll find lots of good advice and info on here, especially from the other parents of kids with IBD.
Good luck - hope you find something that works. I am a big fan of natural remedies as well, but *from my own personal experience* you should be open to all options. Certainly alternative therapies have worked for many, but they are as varied as the pharma options. Perhaps a medically supervised elemental diet or TPN is something you can look into.
- Amy