My little man has had so many tests. 5 EEG's on most of them when they did the test using the flashing lights his eye's rolled up and back a bit but the EEG altered very little, on his last EEG over a year ago now he had a slowing on the back right side of his brain. He has had a brain ultrasound. When they did his first MRI at 18months the metabolic specialists also had blood drawn and he had a Lumbar puncture. He has also had quite a few blood and urine test. Before they worked out he was having seizures he had a chest X Ray due to continual bronchitis and a also an ultrasound of his stomach, due to reflux, this has cleared up but he now has myclonic diaphragmatic seizures which they think may have also been causing his reflux early on. Thank fully we found a brilliant private Neurologist who has kept looking. Even he was a little surprised in finding a brain lesion. His blood tests have been confusing low or border line iron at times, he has a strange blood test reslut which no one really knows if it means anything he had border line zinc but almost none in his red blood cells, his Neurologist and Paed asked around and was told at this stage it was of no clinical significance? Yet everyone has this feeling it might be. He also often has really low temperatures, 34.4c is common and often is dripping in sweat after his afternoon nap, often so much so that we need to change his whole bed. His condition confuses everyone as he can appear at times so normal then at others things are definitely not right. As I always say my main worry is that if it is like they think a chemical imbalance which occurs in his brain what potential damage it could cause. At the moment he "comes" back from his seizures and strange behaviors, being not able to walk etc but I do worry that one day what ever happens may cause permanent damage. I am going to continue my search for an answer until he either outgrows this or they do find an answer, not because I need a name for what is happening but a way to help him with what is happening so that he can reach his maximum potential what ever that will be. The common line we hear from his specialists these days is that they are worried they are missing something.
Ask as many questions as you like. This board is amazing and I have been able to get so much more information on here than from anywhere else. The people on here are amazing and to be able to chat to someone who has been through this or are also going through this is the best thing.
I hope you can find answers quickly.
Donna
