Medical UpdatesSTATUS - Still no diagnosis to why Ben is having seizures, he is currently in a Drug Trial at UCSF.
April 26th, 2010 Ben had a seizure on Monday night.
April 10th, 2010 Ben went to the hospital on Teusday spent 48 hours being monitered on his new Medication (Lyrica). He was a real trooper and enjoyed flirting with all the nurses. He is happy to be home but is still suffering from side effects. He left the hospital on a large dose of the new Medication so we can start dropping one of his older medications. It is rough taking four drugs at the same time, so Ben needs to be watched very closely. The doctor also let us know that we can expext Ben to have seizures while we make these changes. We are trying to raise funds for rescue medication ($1500.00). April 1st, 2010 Ben began a new Drug Trial on Tuesday at UCSF. He came home on March 23rd, 2010 Ben had two seizures yesterday. The first was smaller at 10:00am and did not require hospital visit, but the second at around 3:00pm was much worse, so we called 911 and went to Sutter Hospital in Sacramento. The good news is Ben's doctor was on call and worked with the ER doctor they were able to stop the seizure and we were able to come home last night. Ben is doing pretty well this morning but is post dictal and spaced out. I will keep a close eye on him while the Dr. Sullivan rushes his labs from Monday. Ben was really a trooper on Monday while they ran an EKG, EEG, blood and urine tests....it took about 5 hours! We talk with the doctor and reviewed Ben's brain scans and MRI's. We really did not get a lot of answers but it does look like the left side (the larger side) of been brain is developing at age level. The right side looks ---this is so hard because just looking at the pictures is really depressing it made me physically sick--- is smaller from 30 to 50% and is showing pronounced delay in mylination. The cause still has not been determined and they still cannot tell us if this side is going to improve or worsen or stay the same. Ben's medication side effects (inability to regulate metabolic acidosis, body temp, back tracking of language development, and "zoning out" seizures) and the recent weeks of seizure activity indicate the a change in treatment is necessary so we are leaning towards the drug trail at UCSF. We will get the lab results back in the next few days and then make a decision. Ben will be in the hospital most of the break.
March 4th, 2010 Tuesday Ben's blood work revealed he has metabolic acidosis. It's been a rough couple weeks, thoughts and prayers are March 1st, 2010 Today Ben had a 5 hour Break Through Seizure. This is new for
him (and mom). They have a scheduled Doctors appointment in SF on I was with Ben this am and noticed that he was zoned out, this
continued into the afternoon. On the drive to the hospital he came February 21st, 2010 We made it through the move, thanks to a lot of community involvement and donations (please see our sponsors page)
Please thank them when you visit! Now on to the not so good news...Ben had another seizure on Sunday. Mom and Ben are home today! More news to follow, as I get details. We have dinners scheduled for the family for the next couple nights. Thank you to Ethos Project, EDH Lions Club, Boy Scout Troop 454 and other wonderful families that came together to pack and move! February 5th, 2010 Ben was admitted into Sutter Hospital due to dehydration (caused by Flu & Strep), and an abnormal EGG. He showed signs of pre-seizure and was medicated and watched overnight. He was released and sent home. January 28th, 2010 Stacey and Ben were taken by ambulance early this afternoon to Mercy Folsom Hospital. They are in desperate need of funds to purchase the rescue medication needed for Ben at the beginning of his seizures. If you are able to donate please do so as soon as possible, the cost is $1,500.00. If you are able to donate (even a small amount) it will be appreciated. We are working with the Lions Club to have a large fundraiser for Ben. More to come. I doubt Stacey will be home in time for dinner, if anyone can provide an emergency dinner tonight, please contact Kim Stein at 941-7585 or dksfly@comcast.net to arrange. January 19th, 2010 Ben had another seizure Saturday night, after 5 weeks with no seizures. At this time they are not sure what caused the seizure. It could have been due to the Stomach Flu last week and not keeping the medication down. This is what will be evaluated at the Dr. apt later this week in San Francisco. Ben had started a new medication many weeks prior, it seemed to help stop the seizures. They were hoping to start decreasing this medication as it has impaired Ben's speech and he is now using basic speech, no more than 4 words. The great news... due to the ability of the family to pre-treat the seizure at home, prior to the ambulance arriving, it slowed the seizure down. The ambulance was able to get Ben direct to Sutter and treatment was fabulous. Ben was seen by pediatric neurologist immediately. This seizure only lasted 6 hours. Ben was kept at the hospital till Monday, for observation, due to his blood levels. Ben also has a referral for UC Davis; Mind Institute. This will be a complete evaluation on his cognitive & physical developments.
November 2009 I spent a 2 weeks at UCSF, in November, for testing, to learn more about my condition. We have seen many doctors who have all tried labeled my condition - but none of them agree. My condition is very rare, possibly unique. The doctors are talking about the possibility of radical brain surgery scares me and my parents. It looks like I need more testing. |
