I have been thinking about you guys all day...glad to hear that it wasn't too hard on William. Please let me know if you need anything or just want to talk. Please keep me posted.
Sorry to hear about the EEG results. Is the phenobarb a short term fix until they find the right med for him or are they planning on using it long term? Noah was on trileptal and we really liked it, but I know that different seizures call for different meds, so it might not work for Mr. William.
I agree with Emily. I was diagnosed with a seizure disorder (incorrectly) 7 years ago and went through the ringer with anti-seizure medications. Phenobarb is very strong and can have various affects on personality etc. Is the plan to keep him on it long term? Are they going to try others?
Its an up and down roller coaster, adjusting the meds.
If you want to get perspective from someone who's been there/done that, let me know.
I remember the day we were told Jack was having seizure activity...I so did NOT want to hear it. He started Tegretol at 15 months and was seizure free until recently (and he just turned 4). He had a growth spurt and illnesses that lowered his seizure threshold...I truly hope the meds work for the seizures. You'll be in my thoughts.
I'm the Mommy to two preemies, one 27 weeker and one 28 weeker. My 28 weeker has been diagnosed with PVL (periventricular leucomalacia) and ONH (optic nerve hypoplasia). Now we wait.
11 comments:
I'm sorry to hear about the seizures, praying the medicine is effective and that the MRI holds some good news for you.
I have been thinking about you guys all day...glad to hear that it wasn't too hard on William. Please let me know if you need anything or just want to talk. Please keep me posted.
Sorry to hear about the EEG results. Is the phenobarb a short term fix until they find the right med for him or are they planning on using it long term? Noah was on trileptal and we really liked it, but I know that different seizures call for different meds, so it might not work for Mr. William.
I'm sorry:(
Hi Lisa,
I agree with Emily. I was diagnosed with a seizure disorder (incorrectly) 7 years ago and went through the ringer with anti-seizure medications. Phenobarb is very strong and can have various affects on personality etc. Is the plan to keep him on it long term? Are they going to try others?
Its an up and down roller coaster, adjusting the meds.
If you want to get perspective from someone who's been there/done that, let me know.
I'm sorry to hear about the seizures. I know this isn't easy for you to find out. Hang in there. This is another journey on the rollercoaster...
I just wanted to let you know that you have lots of love and support.
Regina
Lisa,
I am so sorry. You and your family continue to be in my thoughts.
I'm so very sorry about the seizures. You are continually in my thoughts and prayers.
I'm so sorry to hear this news. You certainly didn't need another blow. Thinking about you guys a lot.
I remember the day we were told Jack was having seizure activity...I so did NOT want to hear it. He started Tegretol at 15 months and was seizure free until recently (and he just turned 4). He had a growth spurt and illnesses that lowered his seizure threshold...I truly hope the meds work for the seizures. You'll be in my thoughts.
Angela
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