Cullys test cut short

Cully's EEG was cut short today. He was taken down to emergency not doing well at all. His potassium level  has been declining and hit a very low level. His tummy is tight as a drum and he was acting lethargic. I put my finger in his hand and he cried and pulled away. Seems to be achy and have a headache too. Cully has been sleeping all day too which is very unlike him.

  Radiology took two sets of Xrays and questioned if he had any sort of a radioactive fluid test done recently??  No never!!  they say that Cully may have had eaten something then as there is something showing up like that in the Xrays.  They then said it could be some sort of lead that he ingested??   See earlier posts where I mention that Cully eats EVERYTHING.. Pika.  It is possible but what he ate we have no idea.

 Once admitted to the hospital he was transferred upstairs and is being taken care of by his mummy. Julie just called and Cully is screaming non stop. He is just miserable tonight.  He has an IV drip of potassium and ?? and is being watched.

  The wonderful Dr Chugani held his meeting with us in the emergency room. Cully's short EEG showed plenty of seizures and hypsarrhythmia. Definition? Hypsarrhythmia is a high voltage disorganized pattern of EEG abnormality in the brain. Basically the IS.

  The doctor has recomended we increase the ACTH and keep trying as the alternative is surgery and he does not even want to discuss that yet. He also explained that Cully is having secondary seizures called "Tonic seizures".

  I still was uncertain of the type of diagnoses of IS that was given. It takes me a while to understand all of this so I had to come right out and ask him. I see  the other families mentioning the complete diagnosis of their child and I could not explain our situation. All of this still seems foreign to me and I can not put the pieces together.   Dr Chugani explained that we have a Symptomatic diagnoses of IS which means we have found a cause. Cully has a focus in his front temporal lobe and it appears to be a single focus. This focus is located in a good area in regards to the surgery/removal if we should go that route. He feels that some of the things we are seeing with him such as the sensory disorder and aggressive non stop behavior could be linked to this focus as well.

  My son has several positive things going for him while in a rather unfortunate situation. Now we just need to get him better so we can keep moving on with the treatment.