jia1

Hi - I'm new to this message board, am hoping to get advise and personal experience with this condition that my daughter has, periventricular heterotopia (a rare condition in which nerve cells (neurons) do not migrate properly during the early development of the fetal brain). I've posted a reply to a couple threads, figured it would be easier to start a new thread on this topic.

Last week we took my daughter to the ER, she was not breathing well and her skin color was pale, then she started to jerk in a rythmic pattern, first the left arm, then her head. It lasted a few seconds, then half an hour or so later, her right arm and head started to jerk the same way, it lasted a little longer. It also happened in the ER, her left arm was jerking again. They told me she was having seizures. They transferred her to another hospital to get tests done, everything was normal until the MRI which should that she had a "mild" version of PH. Not sure how "mild" is "mild" but I guess that is another question to ask the dr when we meet with her. We also found out that she had pneumonia, the mucus in her lungs was causing the breathing problems.

My husband and I thought the pneumonia triggered the seizures, and am hoping not to experience them again. The dr put her on Phenobar and said that she will more than likely be on meds for the rest of her life which was heartbreaking to me for her to go through this at such a young age, and to think that she will be on meds forever, I've already read about all the bad side effects.

My question is, are there other alternatives? I want her off the meds completely, but how risky will it be if she has another seizure? My husband and I think that since this is "mild" condition, it probably is triggered when her body is going through a lot of stress (such as pneumonia, breathing problems lead to less oxygen to her brain).

I should also mention that she was born three months premature, but had no respitory problems or other medical conditions. She was sent home early because she was doing great, grew and ate well.

Any advise, personal experience?