Yesterday we met with Dr. Hainline...he is a Metabolic Geneticist. He ordered more blood tests to rule out a couple more things...if those tests come back negative then we are going to have a muscle biopsy done to rule out any mitochondrial disease. So Nicolas had the pleasure of getting his blood drawn again...they stuck him 3 times and only received enough blood for one test...after three sticks they have to get permission from the Doctor to try again but he had already left for the day....so they are going to call us today to let us know if we can have it done here or if they can wait to do the rest of the blood draws at Riley on December 30th when we have the MRI. We won't see Dr. Hainline again until June. While there we also spoke with a Social Worker. We are looking for programs that will help us give Nicolas everything he needs as well as information beneficial to us as parents...she was very helpful and we look forward to working with her more. Without a diagnoses it is very difficult to get into any programs but she mentioned a few things that will make it easier. She was very resourceful!
As for the 24 hour VEEG...Nicolas had 3 Myclonic seizures and showed some Hypsarrythmia while awake. The Myclonic seizures lasted less than a second...they are quick jerks that look like when your sleeping and you have a quick jerk and wake up...Hypsarrythmia are the irregular brain wave patterns they see on an EEG that suggest he is having Infantile Spasms. They said that while they did see Hypparrythmia they did not see any Infantile Spasms occur. Because there is still some seizure activity they have increased his Topamax medication. If the Myclonic jerks don't get better then they will change his medication. We are to call them with an update at the end of this week. So this is all pretty good news...and we appreciate their efforts and eagerness to help Nicolas.
I'll let you know after the Holidays what we found out about the MRI and blood tests!
Enjoy the Holiday spirit...I know we always do!
Love,
Felisa
1 comment:
We greatly appreciate the update you always give us. God bless the 4 of you during this holiday season. Our prayers as still with you all. Have a great Holiday season.
The Biebers Joe and Nancy
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