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Erethyma nodosum?

My daughter found out she has ulcerative colitis in 2012 at the age of 17. This has been a very difficult challenge for my family and obviously for my daughter. we have tried asicol, apriso and most recently Remicade. i think she may have had a reaction to the remicade, we are waiting for the test results to come back. we just went through and are currently going through what seems to be the hardest part of this disease so far. my daughter started getting pretty sick in january, more frequent stools, weight loss, a urinary tract infection. she also started to develope erethyma nodosum, a painful condition that causes large red bumps on her legs. they eventually go down, but for a few weeks she had severe pain in her ankles and ran a fever. i dont know and i am wondering if anyone else has experienced this? i dont know if the fever was from the remicade, the erethyma nodosum, or something viral. she was tested for mono, flu and strep all negative. i am her mom, my stress level is through the roof! i can barely function some days. i just dont understand why this happened and i am trying to come to terms with it. it is hard because she is now 18, and hard to control, what i mean is, i cant watch her every move. she does not take her medicine like she is supposed to and her iron level got so low her anemia is horrible. i am so frustrated and at times i get angry with her and tell her if she does not do what she is suppose to do then i am washing my hands of this and she is on her own! then i feel bad for saying that. i know my post is pretty scattered, sorry for that, just looking for someone who understands.
 
Welcome to the forum, elainesmom. I am so sorry to hear of all you have gone through. We do have some parents here that have children that are dealing with UC, I am going to tag a couple of them, Devynnsmom and Dutch.

My son has CD located in his TI, with his flares he does have fever along with mouth ulcers, joint pain, fatigue but sometimes it is just fever. My son is 16 so I totally know where you are coming from with compliancy, C has a reason or excuse for everything but normally it is just about his supplements, the meds he sticks to the vitamins and such he balks at and we have to lay down the law sometimes.

There are some parents of kids on here that do experience erethyma nodosum with their CD hopefully some of the members will be along shortly with their experience.
 

my little penguin

Moderator
Staff member
:ghug:My is nine and I can only imagine the FUN we are going to have soon we he starts to "push" back".

Hope they can get it sorted out for her soon.
 
thank you for the replies. i do hope the fever was not due to the Remicade, her UC did improve with the first 2 treatments. It was at the 3rd treatment last week that she had trouble breathing and broke out in hives. her dr is out of town so a stand in dr said we needed to wait and see what her dr said. also they did blood work on her a few days before the 3rd remicade treatment and her hemoglobin was so low she ended up getting a blood transfusion. that was the day before yesterday. She said she didnt realize just how bad she had been feeling until after the blood transfusion and how much better it made her feel. once again, i was pissed about it, the dr's office said according to her labs she has not been taking her iron like she should and that is why her anemia was so bad. i think the blood transfusion scared her pretty bad and we wont have any more issues with her taking the iron anyway! so tell your loved ones, take the iron!!!!!
 
oh and during the bad erethyma nodosum she had mouth ulcers, tons of them! i ended up taking her to the emergency room for that. they told her to use magic mouth wash, childrens liquid benedryl and malanta mixed equal parts, swish in mouth and spit. she said it really helped with the pain for the ulcers. honestly, i am starting to wonder if she has crohns instead of UC. sick of her being sick!
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
i am so frustrated and at times i get angry with her and tell her if she does not do what she is suppose to do then i am washing my hands of this and she is on her own!
Like you could do that even if you wanted to!:) It would be nice to be able to turn it off just for a little while though, wouldn't it mom??

Welcome to the club!
 
she is at a friends house tonight! i am glad to get a break from it. i feel terrible saying that! but she tells me all the time, "stop feeling sorry for me mom"
 
Welcome to the forum. I have no experience with remicade or apriso. My 11 year old daughter was unoficially diagnosed with Crohn's disease when she was 8 years old. It was changed to ulcerative colitis last March. When she's flaring she has fevers, joint pain, mouth ulcers, abdominal cramps, rashes, she has had the skin peel off the bottoms of her feet 3 times, and her hands and fingers once. She started off on Pentasa, which worked great for about 18 mos. Then my mom got terminally ill and passed away four weeks later and Devynn went into a flare. Her meds were changed in Mar 2012 to Mezavant which never worked. They were changed in Nov to Sulfasalazine which *knocking on wood* has been working. She's been having some problems for the last month, but I really think its stress. Up until a few mos ago Devynn has never lost weight, but at her appt last week she's down a little over a kilo. We have also recently found out she is lactose intolerant.
I know what you mean about being sick of her being sick. It seems to never end. They just start to feel better and something else comes along. I hope your daughter feels better real soon. ((((hugs))))))
 
If you have any doubts to her dx elainesmom, then it wouldn't hurt to get a second opinion at some point. I know all the things that come along with either IBD can make it hard on teens or young adults, which can affect their moods drastically, then you throw in the "teen invincibility" factor and it is a wonder we parents survive it all!
 
i do believe this disease is triggered by stress. at the time my daughter was diagnosed she and her boyfriend of 2 years broke up. Then in July of 2012 her father was arrested for a cold case crime based of his DNA they pulled from a DUI charge back in 2010. the cold case was for a rape and murder of a young women in 1989 in Kansas City MO. since his arrest, her health has pretty much declined. good news though, his charges were dropped and he will be home soon after serving a short sentence for the DUI charge. my family has been in auto pilot stress mode for several months and i honestly do think it has had an effect on her condition!
 
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