Mothers of Children with Crohns Community Group
This group is for Moms who have kids with Crohn's disease. Hopefully we can help support each other.
We are going to Bristol on Tuesday to see the specialist, a follow up appointment, but the local consultant is putting in a recommendation to change the treatment as my son can't get below 20mg of steroids without experiencing awfulness. It seems they haven't got on top of the inflammation and 20mg just masks the symptoms but does mean that he is able to live his life.
I am nervous, scared and horrified about the possible change to Inflixamab but also welcome it, my son is out watching football and I have spent the time getting all the various information i have stored in various pukka pads into one....just to make sure i have all the required information for the appointment, and I have just noticed in doing this I have eaten my weight in chocolate! It seems when i am like this i Just eat eat eat and its all rubbish!
so snow as much as I love you, please don't prevent me from getting to Bristol for this appointment as I truely need to go.....
Ramble over with...thank you forum!
alex
I am nervous, scared and horrified about the possible change to Inflixamab but also welcome it, my son is out watching football and I have spent the time getting all the various information i have stored in various pukka pads into one....just to make sure i have all the required information for the appointment, and I have just noticed in doing this I have eaten my weight in chocolate! It seems when i am like this i Just eat eat eat and its all rubbish!
so snow as much as I love you, please don't prevent me from getting to Bristol for this appointment as I truely need to go.....
Ramble over with...thank you forum!
alex
You made my morning! I too, have been known to eat my weight in chocolate while trying to sort through all of the information, hoping to find something "not awful" to cling to.
When we were first faced with Remicade (inflixmamab), our doctor gave me a lot of information to review well in advance. Then my internet search began. Through all of the information the ONLY thing I could see was "has been know to CAUSE certain cancers (lymphoma)." YIKES. How on earth can the doctors expect a mother of a seven year old to "choose" this path for her child??????? I still get a little sick to my stomach thinking about it.
Our doctor helped us get a referral to another Pediatric GI doc. He was able to put it into perspective for me. Gus' chances of being hit by lightening three times, in one day, in three different locations were (statistically) greater than developing the lymphoma. Oddly, that made me feel better.
Remicade provided Gus with the longest and best period of relief from Crohn's. He was pain free. He had energy. He was gaining weight. The benefits truly out weighed my fears. Short of being Crohn's free, our Remicade period was my "favorite."
I hope this is helpful! Best of luck to you with your upcoming appointments!
Thank you and I will let you know if we get to Bristol and what is said......
Alex
Cheryl