Most days I feel completely helpless when it comes to my daughter. I want to take it all away for her, but know that I can't.
So, my question is what does everyone do to get relief? I know that all people are different and what works for one doesn't necessarily work for another. I also realize that I'm not giving specific symptoms that you are seeking relief from. It's just a general what makes you feel better or what relaxes you.
Also, other parents, what do you do that seems to help your child? I know that my daughter loves to have her head rubbed and that seems to relax her and ease some of her pain.
Just curious to see what other do and can possibly try on my daughter.
She has not had surgery & is not scheduled at this time. We have an appt at the WI Chiari Center in June. We found out in Sept 2011 & have been slowly researching doctors & learning more about it. Trying to avoid surgery at this time if possible.
I can tell you what we do to help my daughter (which honestly isn’t much). She is scheduled for surgery on Monday. She has multiple syrinx throughout her spine so not having surgery wasn’t an option. She has a headache and nausea every single day. We don’t really do much for those she has learned to deal with them pretty well. The “bad” headaches we use ice, tramadol and phenergan. I have recently started using the arnica cream. None of this will take a headache away but it eases it enough that the phenergan kicks in and she can sleep. The other thing we do is make sure she gets plenty of rest and try not to overdue it (sometimes impossible). I have noticed that if she has had several days of practice, competitions, school etc that it will be followed by several “bad” days. We do out best to avoid this.
Everyone is different and not all things work the same but I hope maybe one or all of these works for your daughter. I have spent more times than I can count crying my eyes out (not around her) because she hurts so bad and there is nothing I can do for her.
I will be thinking and praying for you and your daughter. Let me know if you find something that works. Sometimes I will try anything! Good luck!
Mom425 - thanks so much!! I too have spent more times than I can count crying my eyes out because there is nothing I can do for her (of course never around her). I swear that kid of mine is the strongest person I know!! Good luck to your daughter and to you as she goes through surgery Monday - you guys will be in my thoughts and prayers!
Beeba - my daughter was on Midrin and it was something that she loved helped better than any other medication she's currently on or has been on we were very sad when they took it off the market. But I will look into the baby asprin thing for sure. Thanks!
Where can I get this Arnica cream? Is it something that is easily available? She does love to have her head rubbed, I also got her a "brain tickler" at a store called Marbles The Brain Store - I got that in Chicago when I was there for work. She really likes it because it's a massager for the head.
Thanks to everyone with the thoughts and advice so far. It really seems like we do most of it already.
It's just so hard to feel so helpless. She was such an active child, loved volleyball, dance and just hanging out with her friends staying up late & just being a giant goofball!! Now she still does the school dance team, but she goes to bed more often then not at 7 pm and doesn't go out with her friends as much. She has a headache everyday, she has nausea everyday sometimes to the point where she vomits (sometimes she wakes in the middle of the night to vomit), her grades are suffering (school is a battle but we have a meeting on Friday to get her going with a 504) and she's just not the same kid anymore. She's supposed to be enjoying life, enjoying high school, enjoying being a teenager and pushing the boundaries w/mom. Okay, done complaining and thanks for listening!!
I am a mom and I can only imagine your fear and frustration. I see you have already gotten good input...My fear is for you....are you taking time for yourself? As a mom/caregiver..it is so darn hard to look out after yourself...but you must! Easier said than done...oh, how I know! As women we tend to put others 1st..which is a wonderful thing to do..as a mom, we have to. However, if we don't tend to our needs, we may not be that effective when it comes to being there for others.
Let us help you....when you need a shoulder ...we are here...you are not alone...feels like it at times, I am sure......Know you and your girl are in thought and as trite as this may sound..you are in prayer..not that my prayers are extra special...I personally feel as though God hears all our prayers...I hope that does not offend you in any way...Some folks are not 'believers' and I am not here to preach my own beliefs. I am here to get and receive help for you all.