Hi ladies, we are going thru testing for my DS who shows signs of hypertonia (increased muscle tone) and myoclonus (jerking, spasms). We've already done bloodwork and EEG, which were normal, but the next steps are MRI and spinal tap. Both of which he will be put under for. He is only 7 weeks old and weighs 8.5 pounds, and I am freaking! First, about the anesthesia, and second about the spinal tap. Has anyone else gone through this?
There are so many things that this could be, but they are thinking a neuromuscular disease at worst, or a very very severe case of reflux. If reflux, it's the worst the neuro has ever seen, so he is thinking disease. We get the MRI and spinal tap done next week, and I'm unsure about how to react. Shoud I be concerned about the spinal tap? Shoud I get a second opinion before doing it, or should I just be confident in our neuro and let him go ahead as planned? I know you all can't make my decision, but I don't know what to do-- I can't hardly think straight enough to rinse the shampoo out of my hair before getting out of the shower. (Yeah, I did that last night.)
Sorry for the vent..... has anyone been through this? How did it go?