September 28, 2009
September 26, 2009
24-Hour EEG Results
Oh yeah, I forgot to mention that Bertrand's 24-hour EEG was read yesterday by four neurologists, including Dr. Colin Van Orman, an epileptologist. Bertrand's EEG was highly abnormal. There was lots of noise, focal seizures and generalized seizures. Bottom line: they all agreed with the April 2009 Duke University finding of multi-focal epilepsy.
Let me take a moment here to explain something that until a few months ago was not clear even to me. Conditions like epilepsy and autism, both of which Bertrand has, are really symptoms, not stand alone diagnoses. Like a runny nose can be caused by viruses, bacterias, allergies, genetics, etc., so too can epilepsy have a variety of root causes. The same goes with autism. In Bertrand's case the root cause of both is believed to be an undiagnosed genetic disorder.
Let me take a moment here to explain something that until a few months ago was not clear even to me. Conditions like epilepsy and autism, both of which Bertrand has, are really symptoms, not stand alone diagnoses. Like a runny nose can be caused by viruses, bacterias, allergies, genetics, etc., so too can epilepsy have a variety of root causes. The same goes with autism. In Bertrand's case the root cause of both is believed to be an undiagnosed genetic disorder.
The Full Truth
In Bertrand's new room on a wall there is a quote from Ralph Waldo Emerson:
Well, sometimes I may be a bit too optimistic and don't always convey the most accurate picture of what life with Bertrand is really like. For many, yesterday's emergency room visit came out of no where, when for us an emergency room visit wasn't a matter of if. It was a matter of when.
For maybe the second time in his life, Bertrand had a fever this week. On Tuesday, after coming home from his EEG, Bertrand was very sedate--very quiet and still. He went to sleep early. On Wednesday he "woke up" with a fever (ranged from 99 - 101 degrees), so I gave him Motrin.
I say "woke-up" because he was barely there. :( I have never been so scared in my life. He wasn't moving at all! He would just stare with no blinks. You could snap in his face, shake him, pinch him, touch his hands, hair, eyes... no one was home. It was like holding a baby doll. He spent about 80% of his eyes-open-time like this and then he took three very long naps (he takes one nap normally).
The Motrin worked at controlling his temperature, but he was clearly having severe, prolonged absence seizures. Unfortunately, Valium rarely works on absence seizures, and such was the case with Bertrand. I left (somewhat hysterical) messages with our neurologist's office. Thursday came and Bertrand was improved. I got some eye contact and a few smiles, but he was still not himself--no babbling, no interest in toys, and even more telling, no interest in spinning. I left another message at B's neurologist's office and sent an email.
By Friday I was a wreck because, while Bertrand's fever was gone, he was still not my baby--he was a Bertrand shell. Not the Bertrand I know and love. He had an appointment with his fabulous rehabilitation doctor, Judy Gooch. She took one look at Bertrand and paged the neurologist on call (Dr. Denise Morita) to report his "near constant seizures" and "severe functional impairment". Dr. Morita recommended we take Bertrand to the emergency room.
So we did, and the rest is history. I'll admit, a small (okay, a BIG) part of me was hoping that the Keppra would be a miracle drug. Bertrand would take it and suddenly I'd have a near normal, if delayed, baby. Well, so far, all it has done is get Bertrand back to his version of normal. He has all of his tiny seizures, movements, and irritability back. But, he also has his babbling, smiles and giggles back, and I feel like the luckiest woman alive. My baby is home. :)
Bertrand passed out, seizing on the exam table at the emergency room.
Bertrand receiving his Keppra transfusion while being comforted by his worried Daddy.
Bertrand at home with his doggies, feeling much better!
"When it is darkest, men see the stars."
Over the years it has grown in significance for me. It is about how we often see the greatest side of human nature (charity, heroism, love) only when it is evoked by human nature is at it's darkest (poverty, war, hate). It's about having to face challenges in order to finally realize how precious something truly is. And, at its core, it is about optimism and always holding onto hope.Well, sometimes I may be a bit too optimistic and don't always convey the most accurate picture of what life with Bertrand is really like. For many, yesterday's emergency room visit came out of no where, when for us an emergency room visit wasn't a matter of if. It was a matter of when.
For maybe the second time in his life, Bertrand had a fever this week. On Tuesday, after coming home from his EEG, Bertrand was very sedate--very quiet and still. He went to sleep early. On Wednesday he "woke up" with a fever (ranged from 99 - 101 degrees), so I gave him Motrin.
I say "woke-up" because he was barely there. :( I have never been so scared in my life. He wasn't moving at all! He would just stare with no blinks. You could snap in his face, shake him, pinch him, touch his hands, hair, eyes... no one was home. It was like holding a baby doll. He spent about 80% of his eyes-open-time like this and then he took three very long naps (he takes one nap normally).
The Motrin worked at controlling his temperature, but he was clearly having severe, prolonged absence seizures. Unfortunately, Valium rarely works on absence seizures, and such was the case with Bertrand. I left (somewhat hysterical) messages with our neurologist's office. Thursday came and Bertrand was improved. I got some eye contact and a few smiles, but he was still not himself--no babbling, no interest in toys, and even more telling, no interest in spinning. I left another message at B's neurologist's office and sent an email.
By Friday I was a wreck because, while Bertrand's fever was gone, he was still not my baby--he was a Bertrand shell. Not the Bertrand I know and love. He had an appointment with his fabulous rehabilitation doctor, Judy Gooch. She took one look at Bertrand and paged the neurologist on call (Dr. Denise Morita) to report his "near constant seizures" and "severe functional impairment". Dr. Morita recommended we take Bertrand to the emergency room.
So we did, and the rest is history. I'll admit, a small (okay, a BIG) part of me was hoping that the Keppra would be a miracle drug. Bertrand would take it and suddenly I'd have a near normal, if delayed, baby. Well, so far, all it has done is get Bertrand back to his version of normal. He has all of his tiny seizures, movements, and irritability back. But, he also has his babbling, smiles and giggles back, and I feel like the luckiest woman alive. My baby is home. :)
Bertrand passed out, seizing on the exam table at the emergency room.
Bertrand receiving his Keppra transfusion while being comforted by his worried Daddy.
Bertrand at home with his doggies, feeling much better!September 25, 2009
Home
We decided to take Bertrand home rather than have him stay in the ER overnight. (We live 4 minutes from the hospital, so we can rush him back if there's a problem.)
He's received the full dose of his medication, and we're just watching to see if the seizures subside now.
He had an extended seizure in front of three neurologists in the ER, and one of them remarked, "If that's not a seizure, I'm not a neurologist."
We're seeing more smiles out of Bertrand right now, and it seems that the seizures have diminished in frequency. We're hoping they'll be gone tomorrow.
We'll try to post more frequent updates.
He's received the full dose of his medication, and we're just watching to see if the seizures subside now.
He had an extended seizure in front of three neurologists in the ER, and one of them remarked, "If that's not a seizure, I'm not a neurologist."
We're seeing more smiles out of Bertrand right now, and it seems that the seizures have diminished in frequency. We're hoping they'll be gone tomorrow.
We'll try to post more frequent updates.
Bertrand in emergency room
We're in the emergency room.
When Bertrand saw Dr. Gooch this morning, she was disturbed by the frequency and intensity of his seizures. She said he needed to begin antiseizure medication immediately and sent him to the emergency room.
Bertrand is midway through a megadose of Keppra by IV, and we'll be monitoring him closely for 24 hours for side effects and any signs of improvement.
As of this moment, we're still seeing seizures, but it can take a while for the medication to take effect.
When Bertrand saw Dr. Gooch this morning, she was disturbed by the frequency and intensity of his seizures. She said he needed to begin antiseizure medication immediately and sent him to the emergency room.
Bertrand is midway through a megadose of Keppra by IV, and we'll be monitoring him closely for 24 hours for side effects and any signs of improvement.
As of this moment, we're still seeing seizures, but it can take a while for the medication to take effect.
September 24, 2009
The New KidWalk!
After months of waiting (we initiated the search last April), Bertrand finally has his fire engine red KidWalk! The KidWalk is a fancy schmancy gait trainer that was developed at Stanford University. It is easy for me to adjust and transport while for Bertrand it is easy to walk and move his hips laterally (which other gait trainers don't really allow). Isn't he adorable in it? :)
Bertrand looking proud and satisfied in his new KidWalk!
Bertrand looking proud and satisfied in his new KidWalk!September 23, 2009
Bertrand Loves the Angels!
Bertrand looking like he ran a few innings after his EEG, but happy to get wonderful presents!Bertrand finally has a favorite baseball team: the Los Angeles Angels of Anaheim! You can imagine how surprised we were to come home from the exhausting over-night EEG to find a box of goodies from the Angels sitting on our front porch! Enclosed was an amazingly kind note from Carole Moreno, wife of Artie Moreno, the owner of the Angels.
Bertrand falling asleep while cuddling with his Angel's Monkey (now hanging from his bed).A follow-up call to my mother-in-law revealed that while Bertrand was staying with her in Arizona last week (while our house and his room were being painted), Bertrand actually met Mrs. Moreno. She was captivated by his adorableness and, in turn, Bertrand was enthralled by her! I am still floored by Mrs. M's graciousness, while Bertrand is on the floor playing with his monkey with its red and white tissue paper. The Angels have a new fan in me too. :)
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