Chiari Malformation in kids

[SCaudle3]

My daughter has a Chiari-Malformation She is 8 years old. They seen it when she was 4 years old but it was never a big deal. Long story shorter she had a fall and everything changed fast. She feels pressure and pain all the time and sometimes it gets BAD (like been admitted for pain management) she has a surgeon and will be having surgery soon. But she has been having a fever with her HA today. She goes in in the am to get surgery dates ect but I just Wondering if it's the chiari is giving her the fever or a bug. And if it is a bug how long will they put off the surgery we need it done ASAP she can't play or sleep it's only been bad for her under two months but she can't take it now hew legs go numb and she falls.  This is all too much for anyone let alone a little girl. Does anyone know kids that have been through this?

[SCaudle3]

Oh sorry it's RoryLexus.

[selmaS]

  May I ask her first name?

I will post a Prayer thread....it is going to be here soon.....

No worries, wishing u both the best <3

[SCaudle3]

I haven't had a chance to post but her surgery will be nov.1st    Thank you for the prayers

[selmaS]

  U did it right....lol...no worries....

Praying she is feeling better and Monday's appointment goes well <3

[SCaudle3]

I meant to put it to you not by you -sorry

[SCaudle3]

Thanks for the support. She does have a bug but it's made her HA bad.  The have her Meds so she could sleep. She needed the sleep she was in so much pain. She doing better today still on med(they said to give all weekend even if pain lowed some)  We go back to nurosugen first thing Monday morning.  I will post the surgery dates as soon as i get them.  They have ruled everything eles out for her. I really think the surgery will help.  Just scary.  Thanks for listening

[selmaS]

  Goodness I forgot to mention the fever....yes, I used to get a fever with my HA's.....but nothing too bad,.,...It is best to have her Drs check her for a bug as they will not want to operate if she has one.....

  Sorry I forgot to address this.

[selmaS]

  Hi and welcome to the Chiari forum.

May I ask, did they rule out ALL related conditions?...Sleep apnea, tethered cord, ICP, POTS, ehlers-danlos?

IMHO it is very important that these be ruled out as they ca affect how she feels and heals post op.

Kids tend to bounce back much better with this then us older folks and I did well, I was 2 months b4 my 50th birthday when I had surgery.....

Do post her surgery date in the surgery date thread for 2013 so we can post a prayer thread for her.

Know u r not alone ....and this is a more common condition then most may lead u to believe...it is finding the right Drs and support that can be difficult....