Wednesday, July 14, 2010
I finished Julias first annual report for Ukraine consulate in NYC. where has this year gone? She saw Neuro Dr yesterday about the EEG, and other questions we have. Seems the encephalopathy results are regarding the brain waves, one type of brain wave is much slower than for a child her age. The Dr felt that is was just from DS. I don't think that is right, and my instinct is telling me the same, I just don't buy that for some reason, just DS . Not that I'm a Neuro Dr, but Julia is so funky, such odd body movements, we have no pre natal history, early years in the orphanage, we do know there she was severly negelected, abuse going on. She still has staring episodes which the Dr asked about, about 2-5 sec, doesn't drop, lose consciousness, just stops, turns her head to the right, stares, and than goes on her way. He felt that we should have a home EEG, as the hospital one didn't pick this up, and if it shows seizure activity, than go the MRI route. I told the Dr that she is going into the OR for her teeth on the 23rd of this month, and maybe do an MRI than, as she will be out. Why sedate her twice? Don't think he was keen on that idea. We have all ready done the home EEG route with Matt when he was a baby, so that doesn't bother us, putting her under again for an MRI, bothers me. The issue of CP, he was on the fence about. He said that Julia has reflexes, kids with CP have diminished refelxes, "Well, our son with DS has nearly non existant refelxes and doesn't have CP" No comment from the Dr on that one. He did find an appt note from Ortho, slight hip bone (forgot the correct med term) flattening, common with DS, and common indicacator of a child with mild CP" the Ortho Dr also has a CP clinic. I have not seen that note but am requesting it today from the Ortho office. Neuro said "hum, that's interesting that Dr Z wrote that after seeing Julia" I told the Dr about julias vision, even with glasses, her head is up, and looking ahead, she still needs protection from walking into objects, as cars, walls, doorways, maybe a brain-vision issue? He thought there could be. other than her nearsightedness. The developmental-international adoption Dr seemed to be more into the possibility of the mild CP issue, as she really understand how Julias early years were living in the orphanage, no history about her birth mom pregnancy, labor-delivery, if she ever drank or did drugs during, nothing. The orphanage was tight lipped about any of this. Anyway I may E mail Neuro and ask about the MRI again, as we can get pics of her brain, as she will be under anesthesia for her oral surgery. Obviously something isn't right, and Neuro did mention that Encephalopathy is a brain disorder, the home EEG is the easy part. Camp is now on the ball of recording her staring episodes too. Ashley and Matt are doing amazing. I'm having my friends 17 yr old daughter hang out with Ashley for a little while this afternoon. YYIIPPEE!!