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Originally Posted by mly  Just got home about an hour ago. We meet with the neurologist to go over Bella's MRI and spinal tap. Her spinal tap came back normal but there were many things wrong with her mri. First of all, she has fluid in her brain and some in her spine (where the spine connects to the brain) due to the fluids pushing on the back of the brain. She also has a cyst in her brain and the neuro is hoping it's gme but we're not sure if it is or if it's necrotizing men. He says we won't know for sure until the meds start working or not. He wants Bella to go on prednisolone (for the inflammation) and omeprazole (to decrease the amount of csf production). Hopefully with the omeprazole, the fluids will slow down and some can be absorbed. I'm really hoping this would hope. He said that if it didn't help with the cyst also, Bella would have to have surgery but with her cyst, he said it was a 2 on a 1-10 and normally he'll recommend surgery to someone with a 7.
Let's pray this works. |
I am praying big time -- contact Pam asap she is awesome - I will link this thread to her in my maltese group too. She is a sweetheart and she is in the medical profession as well. She is going through gme right now and it was tough getting meds right but she has a good neurologist as well and also join the gme forums and the yahoo groups she is on as well as she said they are very helpful and you can get ideas on those meds from them as there is one specialist on this they follow his treatment so you can discuss with neurologist and it may even be what your neurologist is doing as well.
I am so HAPPY you have a firm diagnosis as now she can get better
Also glad you did not waste your money on all the liver shunt stuff as knew it was not that so that saved you a road you would have went down thus delaying her care further and saved you some money too
I am praying real hard this all works and she will be a happy healthy girl again with her meds
Glad he uses prednisolone too as that is much easier on her liver as they have to use high doses with stuff like this and my dd had alot more side effects on prednisone vs prednisolone and since your baby has mvd i think it is much safer.
Giver her some hugs and kisses from the D gang
oh what did he say about the L/D, CLAVAMOX, AND LACTULOSE? Did he say not to use it anymore ?