03-02-2009, 08:36 PM
My name is Andrew Hlebik currently stationed in Texas.
My son Jaiden was born Nov 6 08 with port wine stains on both sides of his face, left hand, and left foot. The army hospital didnt have any previous cases of port wine stains and had little knowledge.
Four days after Jaiden was born we seen a Neurologist at Wilford Hall medical center that scheduled a MRI. We were recomended to wait three months when jaiden would be better able to handle being put under for the MRI.
We were checking in at the front desk of santa rosa childrens hospital for the MRI when Jaiden had his first seizure. My wife picked up on it well before I did. He was unresponsive and clinched his right hand. We were rushed to the ER where he was given adivan and after a few hours of no seizure activity had his MRI and sent home.
Jaiden was back in the ER that night when he had another seizure. The ER did get the message that he was diagnosed with Sturge Weber from their neurologist but not the extent. He was still haveing seizures and given another dose of ativan, a loading dose of phenol barbitol, and put on 8ML phenol barbitol Daily until we could get to our neurologist.
Throughout this week jaiden has been in and out of the ER because his seizures start small and progress to larger episodes. More loading doses and higher barb daily doses seem to have controlled the seizures. Jaiden was eventually sent back to Wilford hall ICU where our neurologist works to observe his seizures.
The last four days at Wilford hall were more preventive than reactive. The seizures were stopped. His eye pressures was checked and one had a pressure of 36 and closer looked showed that the optic nerve had "cupping" that was explained to me to be the result of the presure over a period of time. Jaiden was put on eye drops to help with the pressure. His eye pressure daily since then shows a high of 25 and a low of 20 over the last four days. The optic nerve "cupping" improved greatly since he was put on drops.
We are still checking his eye pressure daily and awaiting a apointment with a glocuma specialist.
Our neurologist has put jaiden on trileptal and wants to use it as the anti-seizure medicane of choice but for now is on both it and phenol barbitol. It was explained to me trileptal has fewer side effects but will take time to build up the levels needed to control the seizures before he can take Jaiden off of the phenol barbitol.
We are setting a apointment to go over the MRI and the exact extent of the SWS.
It looks that jaiden will be released today. The 4 days of no seizures, and eye pressure just slightly elivated has everyone we have talked to convinced that we can take him home with daily and weekly visits for checkups.
I am also makeing a appointment with a army social worker concerning a lack of medical coverage when I transition out of the Army.
That being said I have job opertunities in MD, DC, GA, TX, and FL. I came across this website while looking for a area that would be best to treat jaiden.
Any recomendations?
I believe my wife and I are on the right track with Jaiden but the fear of the unknown upcoming is still there.
Your website has great info and helped me already.
I hope this post is in the correct place.
My son Jaiden was born Nov 6 08 with port wine stains on both sides of his face, left hand, and left foot. The army hospital didnt have any previous cases of port wine stains and had little knowledge.
Four days after Jaiden was born we seen a Neurologist at Wilford Hall medical center that scheduled a MRI. We were recomended to wait three months when jaiden would be better able to handle being put under for the MRI.
We were checking in at the front desk of santa rosa childrens hospital for the MRI when Jaiden had his first seizure. My wife picked up on it well before I did. He was unresponsive and clinched his right hand. We were rushed to the ER where he was given adivan and after a few hours of no seizure activity had his MRI and sent home.
Jaiden was back in the ER that night when he had another seizure. The ER did get the message that he was diagnosed with Sturge Weber from their neurologist but not the extent. He was still haveing seizures and given another dose of ativan, a loading dose of phenol barbitol, and put on 8ML phenol barbitol Daily until we could get to our neurologist.
Throughout this week jaiden has been in and out of the ER because his seizures start small and progress to larger episodes. More loading doses and higher barb daily doses seem to have controlled the seizures. Jaiden was eventually sent back to Wilford hall ICU where our neurologist works to observe his seizures.
The last four days at Wilford hall were more preventive than reactive. The seizures were stopped. His eye pressures was checked and one had a pressure of 36 and closer looked showed that the optic nerve had "cupping" that was explained to me to be the result of the presure over a period of time. Jaiden was put on eye drops to help with the pressure. His eye pressure daily since then shows a high of 25 and a low of 20 over the last four days. The optic nerve "cupping" improved greatly since he was put on drops.
We are still checking his eye pressure daily and awaiting a apointment with a glocuma specialist.
Our neurologist has put jaiden on trileptal and wants to use it as the anti-seizure medicane of choice but for now is on both it and phenol barbitol. It was explained to me trileptal has fewer side effects but will take time to build up the levels needed to control the seizures before he can take Jaiden off of the phenol barbitol.
We are setting a apointment to go over the MRI and the exact extent of the SWS.
It looks that jaiden will be released today. The 4 days of no seizures, and eye pressure just slightly elivated has everyone we have talked to convinced that we can take him home with daily and weekly visits for checkups.
I am also makeing a appointment with a army social worker concerning a lack of medical coverage when I transition out of the Army.
That being said I have job opertunities in MD, DC, GA, TX, and FL. I came across this website while looking for a area that would be best to treat jaiden.
Any recomendations?
I believe my wife and I are on the right track with Jaiden but the fear of the unknown upcoming is still there.
Your website has great info and helped me already.
I hope this post is in the correct place.