Today we made the drive to Iowa City to see a Neurosurgeon and a different Neurologist for a "second" (ahem, third and fourth) Neurological opinion. It's strange to feel excited or anxious to meet a Neurosurgeon but after reading about his Academic Background, I felt like he had a background that would cover the bases with what our son is suffering from.
Instead, I got a barrage of strange questions including: What I do for work, What I did before that, Have I been around Chemicals, Did I do drugs when I was pregnant, etc etc. He seemed very disinterested in our son, didn't pick him up, barely touched his head (just measured his soft spot) and immediately dismissed us telling us that what is wrong with him is part of a "bigger picture" that the cyst has nothing to do with his symptoms and that what is wrong with him happened to him in-utero and that we do not need to come back. He also informed us that our son has fluid on his brain (all over his brain) and that it is not hydrocephalus and that the cyst will need to be monitored with yearly MRIs.
This information was all talked AT me while he either a) kept his eyes closed shut while speaking to me or b) staring at my tattoos with a look of absolute disdain on his face. (Typically I cover up my tattoos in front of folks like that (and even my Grandpa until last year!) but it was so ungodly hot in there, I was sweating profusely and the coffee was kicking in like crazy.) I was offended, disgusted, outraged and near tears. Livid, actually. But we were quickly shooed out of there and weren't even made to check-out. I basically felt like I had been attacked, blamed for my son's condition and quickly excused. He didn't even shut the door during our consult. Needless to say I was and am extremely disappointed. *sigh*
After that appointment, we we had to wait around a couple of hours to see the second Neurologist at the Specialty Pediatric Clinic and I did like his bedside manner. He seemed hurried but he was more thorough than the Neurosurgeon (clearly) and asked more about his birth than anyone else has. He also took a look at the MRI and told us that the cyst is not causing his problems, that is is *almost* a "normal" kid and that he will most likely "grow out of it". He said that he would not recommend genetic testing or the 24 hour video EEG that our local neuro has ordered. Again - completely different diagnosis. I want to rip my hair out.
So this is what we are left with:
So what are we supposed to make of this?! We have a Physical Therapist who admits that our son is hard to deal with and that she couldn't imagine having to have a child like him in her home full-time. The other Physical Therapist has had such a hard time with him she wants to co-teach with another Occupational Therapist (the best one at the outpatient service we use) because the first person who got assigned his case turned it down as she didn't feel that she had enough experience.
People that are around him the most see that he is fussy and has a lot of issues so I am so frustrated and torn on which opinion to believe! I was hoping that out of them all at least two would have a similar diagnosis but that just hasn't happened and then we as parents are left here standing all of the (mis)information trying to figure out what is best for our son?
Who am I supposed to believe? I know in my heart that what my son is doing isn't "normal" but it would sure be nice to jump on that boat of denial. I would like to think that the cyst isn't causing issues but no one can seem to come up with another cause that could be causing him so many issues. The Neurosurgeon today is the first one claiming that our son has fluid all over his brain. If that is true, why haven't the two radiologists and the three other Neuros mentioned it?! I'm convinced that no one knows a god damn thing. I'm pretty sure that in back of the offices somewhere is a spinning wheel with different diseases on it and they throw the freakin' dart. Nah... if that were the case... I'm certain we'd have better odds of getting the same answer.
God damn it. I guess it's just back to more waiting.
Hello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis.
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