I knew there was something wrong I JUST KNEW THERE WAS!!!!
Something kept on telling me her "chin drops" were not normal, they were not Paroxysmal Tonic Upgaze they looked too similar to her developing seizures of IS.... So I did what any parent would do, ask Aliyah's regular physician to refer Aliyah to see a chils neurologist in Iowa City for a second opinion....... They booked us for November 27,2011, at the time it was the first week of April. I accepted it and called every week, sometimes twice a week to see if there was any cancelations. LUCKILY last week they called back asking Aliyah to come in on June 8th. (5 months and some weeks before her scheduled appt.) We already had plans to go to Iowa City because Aliyah had an appt to be evaluated for Autism, the evaluating team suggested she did not have autism. (what a relief)
But on June 8th, Dr. Joshi told us what Sean and I were in denial of.... Aliyah's infantile spasms came back. She told us ALiyah's neurologist did not diagnose her correctly, that Dr. Alsayouf did not read her EEG and saw her spasms occuring.
At first I just heard siezures.....then Dr. Joshi said spasms... I was confused ......so I flat out asked her if Aliyah has infantile spasms again....... SHE DID.......... I could not believe it...... my heart dropped. I felt like my daughter was lied to, valuable time of healing was taking from us.....
My family is having a hard time taking this in.
We started with the steriods again, increased Keppra and will eventually take away Topomax... Dr. Joshi said Topomax hinders cognitive developmental skills and speech/communication learning. Aliyah was on the max dose no wonder she doesn;t know simple command or who her mom of dad are.
Please pray for my little girl..... we need prayers.......... I want my daughter healed....
Something kept on telling me her "chin drops" were not normal, they were not Paroxysmal Tonic Upgaze they looked too similar to her developing seizures of IS.... So I did what any parent would do, ask Aliyah's regular physician to refer Aliyah to see a chils neurologist in Iowa City for a second opinion....... They booked us for November 27,2011, at the time it was the first week of April. I accepted it and called every week, sometimes twice a week to see if there was any cancelations. LUCKILY last week they called back asking Aliyah to come in on June 8th. (5 months and some weeks before her scheduled appt.) We already had plans to go to Iowa City because Aliyah had an appt to be evaluated for Autism, the evaluating team suggested she did not have autism. (what a relief)
But on June 8th, Dr. Joshi told us what Sean and I were in denial of.... Aliyah's infantile spasms came back. She told us ALiyah's neurologist did not diagnose her correctly, that Dr. Alsayouf did not read her EEG and saw her spasms occuring.
At first I just heard siezures.....then Dr. Joshi said spasms... I was confused ......so I flat out asked her if Aliyah has infantile spasms again....... SHE DID.......... I could not believe it...... my heart dropped. I felt like my daughter was lied to, valuable time of healing was taking from us.....
My family is having a hard time taking this in.
We started with the steriods again, increased Keppra and will eventually take away Topomax... Dr. Joshi said Topomax hinders cognitive developmental skills and speech/communication learning. Aliyah was on the max dose no wonder she doesn;t know simple command or who her mom of dad are.
Please pray for my little girl..... we need prayers.......... I want my daughter healed....
