Thursday, October 7, 2010

Moving on--little pieces at a time

Got a call at 10:00 a.m. from the neuro doctor. He said he didn't read EEG results until late last night. He said it was a positive EEG (meaning abnormalities in electrical signals in the brain). He said Ryder's abnormal signals start in his frontal lobe. He can't be positive these are seizures until further testing. When I asked what else they could be, I didn't get that clear of an answer--might be ADHD (in a 1 yr old--probably not!). After researching further I learned about different forms of "silent seizures, specifically absent seizures and partial complex seizures. Ryder will need to be admitted into Phoenix Children's hospital over night and hooked up for a 24 hour EEG through the epilepsy center. It is important to determine which type of seizure (if it is definitely one---but pretty sure it is...) so that the correct treatment plan can be made. The doctor told me it will take 3 to 4 weeks for insurance to approve him for this test. He said it is another 3 week waiting list to actually have him go through testing. What I am learning so far is that it is the doctors office that gets approval through insurance companies. The neuro office has yet to get any appointments scheduled for me and I am very disappointed with their communication with me. On the other hand, Ryder's pediatrician office knows us well and is quick to get back to me with any of my concerns. They have scheduled the EEG and gotten other services (PT through AZip and a swallowing evaluation) and cleared it through hour insurance within the week! I will call them tomorrow to see if they can help me schedule this next appointment. I will also call Barrows with the new info and see if this overnight EEG can be scheduled there instead of at Phoenix Children's hospital.

Today was the hardest day yet to get Ryder to drink anything--not sure why. His throat should be feeling better and he seems happy. He still is always tired and sleeps a good 18-19 hours a day. I had to plug his nose and force him to take liquids--none of my other tricks worked today. It was sad and hard for me to do--but its necessary.

As of now we have gotten a lot of results back with a lot of abnormalities, but they don't fit in any specific pattern to determine a definite diagnosis. Honestly- I am not looking for a "label" to describe my baby, just a "term" to get him the help he needs early on. Early intervention really makes a huge difference. I've never been on this side of the situation before.....but balancing a "normal life" for my family plus getting Ryder everything he needs has proven to be VERY hard!.

I don't have his info with me right now (and am to lazy to go get it), but off the top of my head abnormalities include- MRI- abnormal patches of missing white brain matter, part of brain swollen, abnormal EEG, high liver enzymes, several test resulting in inborn errors, difficulties with eating/swallowing/vomiting, slight developmental delay, nystagmus.....

I just want to piece it all together!!! I know it will happen in time though.

A vision specialist came over today... I'll have to update on that later--Greys Anatomy is coming on now--(heehee my life must go on too:)