My son was just diagnosed with a brain tumor. He started regressing in his motor skills around 19 months old and we brought him in to our pediatrician who largely blew us off at that time. He made us go see an orthopedist to see if it was a leg length discrepancy. At that orthopedist appt., obviously no leg length discrepancy was found but he was tested for muscular distrophy and friedrich's ataxia. The stupid thing is that orthopedist had a huge reaction to ds's problems unlike our ped., but told us to expect "not ever knowing what it is." He did tell us to see a neurologist, but he intimated that this was most likely genetic and fairly hopeless. I regret relying on that. I knew somewhere in me that it could be a tumor but I ignored my instinct thinking that I must be off base since no doctor was mentioning this. Instead we stupidly opted to wait another year before subjecting our son to more of, what we thought were, useless tests. God I regret that.
We finally had an MRI done on the 16th, a few days ago and they found a large cystic tumor growing on his cerebellum, hence all of his motor problems. It appears to be "benign", although the neurosurgeon told us that nothing growing in your brain is ever really benign. They think and hope that it's a juvenile pylocytic astrocytoma (the biopsy will tell them for sure). He's also suffered hydrocephaly as a result and may need a shunt or something else. The tumor is compressing his brain stem thus blocking the normal flow of CSF (cerebral spinal fluid). He's going to undergo surgery to remove the tumor sometime in early december (they haven't told us a specific date yet.)
Luckily, we have so much faith in our neurosurgical team. They seem like they'll do their very best to remove it but not harm him more in the process.
I'm so incredibly scared. I feel like this isn't really happening.
Please send positive energy and thoughts our way. Thanks!
In love with Dh since 1998. We created Ds (7.1.03), Dd (10.16.06) and Dd (3.16.09).