Thursday, October 4, 2012

Hard for people to understand




I was talking to my good friend who is also our pediatrician's nurse. I was saying that it is so hard for people to understand, because looking at Liam you would never know what his body is going through. Most people think he looks normal. What they don't realize is his little body is attacking itself. They normally don't see the episodes of diarrhea he has, because we both do a good job at hiding it. He will hold it as long as he can so people don't know. People don't realize how skinny he is, because he wears big clothes. If you were to see my little guy naked you would be shocked. He has tiny arms and legs, especially during a flare up. They see a round face and think "oh he is healthy". Little do they know that is called a "moon" face and its from the medication. Liam is able to manage his behavior at school (which amazes me to this day), but when he gets home it can be awful. He will scream, cry, get extremely hyper and not know how to control himself. He will be running to the bathroom 5 or six times after school and will cry because he hurts. He will not let us hold him or touch him. He will refuse food or will act like he isn't getting enough food. Its hard on all of us. I think it can be the hardest on his sister. She has to deal with his annoying behaviors and ups and downs too. She often gets into trouble, because she is so frustrated with him she will just punch him, instead of asking for help. I am trying my best to intervene and help her before it comes to that, but I am not always able to. 

Today, I had a freak out moment, because my friend was taking her daughter to get the nasal flu spray vaccine. Kids who are on long term prednisone, usually have low immune systems. When Liam was two we were told to stay away from people who got the nasal flu spray. I felt so bad, because I panicked and told the child and mom that Liam and her should not play together for a few days. I must seem like a crazy mom. I did not mean to sound crazy or upset anyone. Its just so hard, because we have to think about things that most people don't. I did not handle that situation very well. I feel bad. I hope with time I can learn how to handle things like that, instead of freaking out and scaring someone. 
I just don't want Liam to get the flu on top of dealing with U.C. UGH!!! So in talking with my nurse friend she told me that if I hear of a lot of kids in his class getting it or if lots of kids are getting sick I need to pull him for a while. So now I wait and see what this fall cold and flu season looks like. 
Has anyone had a freak out moment where you looked like a crazy mom?????

6 comments:

  1. I don't think you are a crazy mom at all! You are doing a wonderful job and making your way through the situations you are faced with as a mom... on top of being a mom:)

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    1. Thank you for the kind words. You are so right, being a mom is hard and lots of work :)

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  2. While I don't have a sick child, Jayden does have a step sister at her dad's who is immuno-suppressed and as such I need to be dilligent with Jayden's health so she doesn't take anything to her dad's house. I understand sounding like the crazy mom and worrying about being overly cautious but really, you can't be too careful. Keep up the great work. You are a good mommy!

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    1. Lisa that is so great of you to be so concerned for that little girl. Its a hard job keeping kids healthy as it is and to try even harder for her step sister is very thoughtful. I am sure her mom appreciates it. I know I would.

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  3. Katie, I relate to EVERYTHING you wrote about the behavior challenges (at-home behavior, food refusal or tantrum, and sensory stuff), emotional exhaustion, and confusion when it comes to consistent parenting. Because we are still looking for answers in general beyond "food sensitivities" with both my boys, I feel like a crazy person every time I walk into a doctors office trying to explain what is going on. I'm calling a 3rd GI doc tomorrow in hopes of finding one who will try to listen to me...but my fear is that when he sees that he's the 3rd in 6 months, I'll walk out feeling like a crazy person again. You are not alone!!!

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    1. Jennifer, keep me posted on what the third doctor says. Are things improving since you removed all the sensitivities? Are the boys still having symptoms? Has any of the doctors wanted to scope Will yet? He is the one with the worse symptoms right? None of the regular tests like blood or stool show anything for Liam. It wasn't until they scoped him that we got answers. Granted he was REALLY sick before they went that route. Doctors don't want to put kids through that unless they need to. Not sure if that helps, but sometimes they need to look inside and see whats going on. Thinking of you friend. Hope you get some answers soon. By they way we can be crazy together :)

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