We have the best Neuro!! The nurse called yesterday as soon as the office opened asking if we could be there at 11:30. The lady who does the EEG, Marie, was at her other job but agreed to come on her lunch break for Dawson. How awesome is that! Thank you Marie!! Dawson did fine, he cried during the hook up but then went fast asleep when she was done. Thats one other thing about Marie, she is super fast at hooking him up....she is GREAT!!!! Anyway, the EEG showed some abnormal activity on the right side. When he was having seizures before it was on both sides, so it looked better than the other EEGs.
When we were talking afterwards, she said that there has been some recent developments in the last few months in genetic testing for causes of epilepsy. She thinks that with possibly linking it to the vaccines and high fever, that he may have Dravert Syndrome, which is a mutation in the SCN1A gene. This genes purpose is to regulate function of sodium ion channels in neuron cells. which is important for maintenance of the healthy rhythm of electrical activity in the brain. So when it does not function properly it lowers the seizure threshold. Since the vaccine contains sodium and cause the high fever...it is a possible link. Now if you go looking into Dravert Syndrome, there are some really bad cases so don't get all worked up. She told us that there is a wide spectrum as far as the severity of the disorder and Dawson would be on the lighter end of the spectrum. When reading the brochure it seems unlikely that this is what he has because it is so catastrophic, so who knows. There is also about 3 pages of other genetic things to test for, so in order to do the tests, they have to have blood. We had to go to an outpatient Medical Mall and wait what seemed like forever to get called back. Poor Dawson got stuck twice because the first arm didn't work. They took two big vials and two little vials of blood from the little guy which equals to about 30 mls of blood.
He was really sleepy and irritable for the rest of the day. He would have 30 minutes here and there in a good mood, but the rest of the time he was clingy or fussing.
We are scheduled to go back in 4 weeks and hopefully the test results will be back. Until we know more the immunizations are on hold once again which is fine by us!!
So, that is where we are, hoping that new testing may give us some answers.
Please keep Dawson in your prayers. We love and appreciate all of you!
Allison & Jeff
P.S. It took me over 30 minutes to do this post, hence why I don't do them much because of all the starting and stopping. Mom is always needed for something. Also, Dawson woke without any seizures this morning...WhooHoo!!!
Subscribe to:
Post Comments (Atom)
2 comments:
Prayers continue here.Thank goodness for the Godsend of a great neuro.they can make or break this seizure deal that is for sure.Whoohoo is right on no seizures.
Praying for answers and no seizures!!!! Hugs to Dawson!!!
Post a Comment