All in the Family

[Jmrogers4]

New here but have dealt with Crohn's around me for 20 years. My husband was diagnosed with Crohn's 20 years ago right after we got engaged. My son was diagnosed 2 1/2 years ago at age 10, we were lucky when he was diagnosed only that they went straight to possible Crohn's when he started having problems and we did not have to go through months or even years of trying to figure out what was wrong and we had a diagnosis after 2 weeks of bringing him in to his pediatrician with weight loss and stomach pains they sent us right away for blood tests and as soon as those came back a referral to a pediatric GI who scheduled colonoscopy for the next week and started prednisone and Imuran the next day. He has been on Imuran nearly the entire time except for a month when we tried methotrexate but he had a reaction to the methotrexate and went right back to the Imuran and with a little adjustment were able to reach theraputic levels. He has felt pretty good since then our only issue has been lack of growth and weight gain, he just doesn't want to eat or is "full" after 1/2 a sandwich so he has only grown 2 inches and gained 5 pounds in the last 2 years!
He turns 13 next month and his doctor has decided to switch him to LDN, I just wish I knew more about it. His father has been on Imuran for the last 10 years and has done really well on it with very few flares. I understand and agree with why he is pulling him off the Imuran, mainly the increased risk of cancer for teenage boys I just hope we are not setting him up for a big flare.
Can anyone tell me how they've done on LDN? Were you coming of another med? Did they wean you off or just stop that one and start the LDN?
We are not starting until next month as he is scheduled to go to Camp Oasis the last week of this month and did not want to mess with chancing a flare and him not be able to attend camp.

 

[Trysha]

Hi JM and welcome to the forum.
I cannot help you with the questions you ask but htere will be some on the forum who will no doubt be along shortly.There is a sub forum that you might find helpful and
it is called:
"Low Dose Naltrexone"---hopefully you will be able to click on this link.
Hugs and best wishes
Trysha

 

[Kelly2]

Hi there - welcome to the forum!

I agree with you - I would feel very uneasy about taking your son off a medication if it is working and he is in remission, for fear that you would "stir things up" if you change anything. When you take him off the Imuran, his immune system is going to strengthen, and that is my worry, that it will turn on him. I understand that while you are on Imuran, you are more suseptible to the flu and infections, and have to keep them away from anyone who has an infectious illness. I understand all the risks, but at the same time, you don't want to risk a flare up. Boy, do we have some tough decisions to make at times!! Could you perhaps start the LDN, and keep him on the Imuran, until it kicks in - I heard it can take a while to work - just a thought. I have heard some good reports about LDN from the other members.

I wanted to mention to you, that I really think you should consider NG tube feedings, and growth hormone therapy in the future, if your boy continues to show signs of stunted growth. Once his growth plates have fused, the growth hormone therapy will not work.

Let us know what you decide to do - take care

 

[Jmrogers4]

Kelly, Thanks for the reply. I think the NG feeding and growth hormone may be our next stop if this doesn't work. The doctor sent us home with a huge bag of different flavors of ensure type stuff for kids to see if we can find a flavor he will drink. Not sure how a kid of mine can not like chocolate but he can not stand it:ylol: We are hoping we can boost his caloric intake and protein enough to see what his body does with some extra calories. We already have an appt with GI in 4 months to check on if that will make a difference and to give the LDN time to work.
Trysha, thanks for the link I will go look at the threads on there now and hopefully get some answers.

 

[Angrybird]

Hello and welcome to the forum, glad you have decided to join I have not been on LDN so can not advise but definetly check out the above mentioned sub forum. Also if you have not already do check out the parents forum, there will be many here who can truly empathise with the tough decisions you have to make in the position of mum/dad.

AB
xx

 

[David]

Hi there and welcome. I'm so sorry to hear about your husband and child. That must be so hard My heart goes out to your entire family.

In addition to what was said above, be sure to check out our Parents of Kids with IBD forum. You can connect with other parents there who understand what you're going through AND I know some have their children on LDN.

I wish you and your family all the best.