We searched for a second opinion because Dr. Narawong was hard to get a hold of. I would call her nurse about Aliyah's prescription (low dosage of prednisolone and vitamin B6) and finally received an answer 5 hours later, which wasn't helpful. I kept on calling them to update them about Aliyah. Frankly I felt they did not care as much for my baby. They scheduled to see my baby 2 weeks later. We as a family felt lost and did not know how to help Aliyah, we felt useless as parents. We knew we needed to do more for our baby girl since the medication given to her didn't seem to help much.
We asked her pediatrician to help us get an appt with a neurologist located at Iowa City children's hospital: 3 hrs away from our home. Unfortunately our insurance did not allow this because it was over their 100 mile radius. Our insurance then scheduled an appt with Dr. Alsayouf in the same city, different hospital.
My husband wanted to see the neurologist in Iowa City but we gave Dr. Alsayouf a chance. He gave the same diagnose of IS, the only difference was the change of medications. Unlike Dr. Narawong, he was going to attack Aliyah's IS by using a much higher dose of prednisolone.
Prednisolone: 15MG/5ml solution (4.5 ml three times a day)
Nystatin: 100,000 units/ml suspension (1ml each side of mouth twice a day)
Vitamin B-6 : 100mg (once a day)
Lansoprazole: 15 mg (once a day)
Topiramate: 15MG (4 capsules a day)
THIRD OPINION
We did not know what was best for Aliyah: to approach it from a higher dose or a lower dose. She was experiencing a cold virus at the time. (We did not know this was the reason why Aliyah's seizures worsened, we assumed it was the high amount of prednisolone given to her) We were visiting Sean's aunt (a nurse) near Iowa City so she could advise us what to do or be there for us while Aliyah had her seizures. She told us to take Aliyah to the emergency room at Iowa City Children;s hospital because no longer was Aliyah's neck dropping but also her whole entire back, and her crying sounded as if she was in horrible pain.
She was admitted and a neurologist there asked for chest x-rays, blood work and another 24 hr EEG done on Aliyah. We explained our concern and asked for advise. He understood both arguments from Dr.Narawong and Dr. Alsayouf, we showed him research journals (given by Dr. Alsayouf) demonstrating that the higher dose is the way to go. He leaned more towards giving Aliyah a higher dose, but he differed in how long he would change the dosage. He suggest every 2-3 weeks. Dr. Alsayouf was thinking more like every week depending on her EEG.
We finally decided to stick by ONE specialist: Dr. Alsayouf, not only because his own son experienced IS and no longer has it but because he was the only specialist willing to see our little girl every week with weekly scheduled EEGs, and calls back in minutes after hours and during his office hours his nurse is great at calling me back within the hour.
Sean and I felt better about our baby's current specialist after checking out and comparing others.
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