And so the Saga continues.

[ssparklers26]

I posted on here quite a while ago about being newly diagnosed with Chiari 1. (6mm) herniation. I have been dealing the best I can with that. Recently my daughter who is 13,and  has cerebral palsy began having seizures. After an MRi we discovered she has Chiari 1 with a 7mm herniation. My other daughter who is 8 has been having increasingly bad headaches. She is scheduled for an MRI soon.

Does anyone have experience with dealing with Chiari in children? I'd love advice, resources etc. Thanks

Kathleen.

[cash242]

I am so sorry having a child with cp is huge and adding chiari must be hard. My 7 year old has ben having ha and we are scheduling an mri....so scary...good luck and may you find a good dr...

[linnielou232]

I am so sorry to hear you are dealing with so much.  I feel your pain.  My DD is 33 but I fear she also has Chairi.  She had a CT scan done and it stated she doesn't have it, but she has all the syptoms.  It's scary for us let alone our children.  Your in my prayer's and I wish the best for yu and your family.

[selmaS]

  Hi and welcome back...so sorry both ur DD's are dealing with these issues...and yes we do have parents of children with chiari and syringomyelia on here that should be able to offer some support and tips.

There are a few ped chiari drs and that is who u want to go to....there is a Dr Frim in Chicago and a Dr Henderson  in Maryland....

I am sure those with first hand journeys to share will post....

  Know u r not alone : )
   "selma"