Hello everyone. My name is Angela. I have a 5 year old with a brain tumor. They are unsure if it is canerous or not. But I needed to join a group who can help me get through this and not bash me for the care I am trying to provid for him. I hope I have come to the right place.
My 5yo had developed feberal seizures when he was 9 months old. When he was 1 he started getting seizures without any fever. So I took him to a neurologist and we got him on some meds. The meds were helping control the seizures to a point. He would still have them every now and then. He has had numerous EEGs, and so far 2 MRI. Up until last Decemeber we were seizure free for alomst a year. I was so happy. Then on the 27th of DEC he had a seizure. Ever since then he has had one atleast once a day. Well his last MRI showed something on his brain. So the one neurologist told me it was nothing to worry about. But I wanted another opion. The other neurologist was nice and told me that it has to be removed one way or another. So he has test all month and then I was told that he had to see the surgeon. I was not expecting that so fast. This surgeon looked at the MRI and told me that it is not a mass that it is a Tumor. I will be removed by the end of the summer. He has another MRI next monday and if the tumor has gotten bigger since the last time he will have it removed next week sometime instead of during summer vacation.
If you got this far thanks for reading. Any advice would be great or what I should expect or should I be demanding something more. I am so lost I dont know what to do.