update

March 20, 2001

Alex continues to progress. He says about 50 words which include animal sounds. He loves music. His favorite song is "Ring around the Rosie.." He finishes by saying "Down!" He has quite a sense of humor and enjoys wrestling with older brother Anthony. He's always kissing and hugging his 10-month-old brother Andrew.

Does he still have seizures? Well, since May of 2000, he's had 6. All were slight head bops that didn't bother him one bit and haven't affected his learning. He's on Vigabatrin and Topamax.

He is about 1 year behind now. He's your typical 2-yr-old. His 3 year birthday was Dec 2000. His receptive language is far more aadvanced than his expressive, but he's getting there.

Last month Alex had a 48-hr. EEG. It showed electrographic discharges (abnormal EEG). However, it didn't show seizure activity. Who knows...perhaps this is the way his EEG will always look. "Normal" people can have abnormal EEGs. For now, we will continue to monitor his EEG and continue his meds. :-)

11/14/00

Alex is doing incredibly well. In September he had a thorough evaluation which included speech, fine motor, gross motor and other evals. He was 33 months at the time.

For the first time ever his fine motor skills fell in the normal range (Mullens scale) !!!!! We were very happy to hear this. He got a T-score of 42 (40-60 = normal, 50 is average)

Gross motor = 26 months . This was the average some motor skills were as high as 36 months!

His cognitive levels and speech are where he scored lowest. This was of no surprise. He is at a 15-18 months level. This is 18 months after his surgery. Before surgery he was non-verbal. Just as we suspected....Alex began learning immediately following surgery. Eighteen months after surgery, he has made eighteen months' gain.

April 4, 2001
Alex seems to be going through a learning spurt! In the past 2 weeks, he has said about 6 new words, he learned to unzip his coat, and he's trying hard and doing a good job repeating words we say. Hurray!!!!!!!!!!

October 21, 2001
We are headed back to Detroit in November where Alex had the surgery for more testing. In the past 3-4 weeks Alex has been having daily seizures. They look atonic, but could be myoclonic. It's hard to tell. He falls forward and sometimes drops whatever object he's holding. Most of the time he manages to catch himself before falling by stepping forward. He has 1, sometimes 2 /day. He could be having more. They are hard to catch because they come suddenly and end abruptly. Hopefully we will get results we need to stop these horrible seizures. Surgery is STILL THE BEST thing we ever did for Alex. He continues to learn and is now putting together 2-3 words to communicate!! He has over 200 words he says now!!!! That's what keeps us going. He has come a long way in the last 2 years.

November, 2001
We went to Detroit and Alex had an EEG and a seratonin PET scan. They concluded that the seizures he's having are indeed atonic and lasts 3/4 of a second.. no wonder they are so hard to catch! They happened daily for the 3 days he was hooked up. He'll be weaned off his present meds (Vigabatrin & Topamax) and we'll be adding Depakote. The EEG showed no epileptic activity while sleeping. We are feeling more at ease now that we also know there is NO OTHER FOCAL POINT... our biggest fear!!! Thank God! Thanks to all who were praying for him.

January 2, 2002
Happy New Year to all!!!
Alex is doing very well on his new meds. We haven't seen any seizures in weeks. We hope and pray this is it, but still remain cautiously optomistic. We have seen the "honeymoon period" too many times. We are blessed with Alex and his continuous progress. I notice that since we reduced the Topamax he seems more alert and is adding more words to his vocabulary. His drooling has almost stopped completely ... another side effect of the Topamax, or so we strongly believe.

March 2002
Alex's seizures continue, but they are very mild. Ironically, his progress continues and even the school notices a significant improvement since December. The change of meds has made a difference in him - more alert, vocal , no more drooling! We have upped his Depakote dose twice since December to try to stop his seizures. He goes days without any, but we need to stop them completely.

Alex was evaluated in February at 50 mos/ 4.2 yrs of age. According to the test results, he's at a 2 1/2 year level cognitively and at 3 yrs. motor. We are very happy with his progress. He was also evaluated for Adaptive Physical Education, but didn't qualify!!! YIPEE!!!!!! He scored average for his age. We were so happy to hear he was average!!!!! Only "special" parents know the joy of their child being "average"... don't you think???!!! Never take your children and what they do for granted.

November 2002
Alex, our boy: Alex continues to amaze us with the new things he learns!!! He's matching colors, trying to sing every song on his tapes & CDs, and adding more and more words to his vocabulary. We've been getting notes back from the Occupational Therapist commenting on how excellent his eye contact is and how cooperative he is. She and the speech therapist also mentioned Alex's great sense of humor. His special ed teacher notices a big improvement from the spring and said he seems happier!

MEDS: Depakote, Keppra, homepathic remedies

Seizures: They are back once again, daily. They are now different. He has complex partial and absence now.

The past 8 weeks has brought about changes in ALex's seizures. We tried increasing Depakote, but it didn't work. We added Keppra 1 1/2 weeks ago. We hope we can stop the seizures before they get worse and cause him physical harm. We have added homeopathic remedies since March 2002. They slowed down the seizures immediately. Even though they increased again, I believe the remedies have improved Alex's overall well-being (mind & body). Now we continue to work on the seizures. It takes time with remedies.

January 31, 2003
Happy New Year to all!!!
Alex continues to learn new things and say new words. He also is putting more and more words together to communicate. He is such a happy boy. He loves school and his bus ride.

The seizures continue daily. He has startle-induced seizures any time he hears a loud unexpected noise, trips and almost falls or is shoved unexpectedly.... anything that startles him like that triggers a seizures (partial seizure). In December, we weaned him off Keppra and began introducing Zonegran. Both didn't help so he is now back to only Depakote which frankly isn't doing anything, but the neuro didn't want to make too many changes at once.

We will be trying Lamictal next. If that doesn't do it , we might be forced to try the ketogenic diet. Pray for our little guy. We've gone so far to have these seizures take any of his development away!

January 4, 2004
Happy New Year everyone!
DEVELOPMENT: Alex continues to learn new things and say new words, but last year was a slow year for progress.

SEIZURES: The myoclonic seizures/epileptic spasms continue daily. He stopped having startle-induced seizures last summer, but started having generalized tonic-clonics (grand mals) instead almost daily. They are very scary and sometimes they feel like he isn't coming back to us. We headed to Detroit summer '03 for more testing. Dr. Chugani and his team of experts concluded that he could once again benefit from surgery. However, this time we will most likely need to remove the motor cortex too. He would essentially have a left hemispherectomy. This is even more drastic than his last surgery because without the motor cortex Alex will be left with a helper hand and a limp on his right foot. I suppose this would be a small price to pay for a seizure-free life with a chance for normal development, BUT there are NO GUARANTEES. My husband and I will absolutely do whatever it takes to make Alex better and if we have to sacrifice his fine motor skills on the right , we will do it. However, before putting Alex through all that, we thought we'd try the Ketogenic Diet.

We started the diet in October '03 . Three months into it, we have not gained control of the seizures. We have seen some improvements. His grand mals only occur when he's sick and he has been communicating more. He is also off ALL meds ...wow! What a change in him! If Alex doesn't gain seizure control in the next couple months by tweeking the diet, we might be headed for surgery. We are keeping our fingers crossed that we won't need to, but are open to it if it need be.

The year 2003 was a very difficult year for all of us, but we are hanging in there. We hope that 2004 will be a better one. God bless all the children and their families who are dealing with epilepsy...

May 31, 2003

DEVELOPMENT: Alex continues to learn new things and say new words. He also is putting more and more words together to communicate. He tries harder to communicate his needs and thoughts. He's doing well in speech and occupational therapy. He knows his colors and almost counts to ten (he skips the #3 for some reason :0))

SEIZURES: The seizures continue daily. He continues to have startle-induced seizures which he has any time he hears a loud unexpected noise, trips and almost falls or is shoved unexpectedly. This seizures is usually a complex partial, but it turned into a generalized tonic-clonic one once. He is also having absence which sometimes turn into the complex partial. Lastly, he has myoclonic seizures usually in the morning after waking. I've also heard them called "epileptic spasms." These come in clusters and last up to 5 minutes. I'm currently teaching him to sit on the floor when they start so that he learns to do so at school. Even though they are mild they can cause him harm if they happen while holding an object such as a fork or if he happens to be going down the stairs. He's totally responsive during those clusters. They remind me very much of the infantile spasms.

DRUGS: We are curently trying Lamictal. We are still slowly working up to 100mg/day. We can't really tell if they are doing something at this point (25mg/day), but sometimes it seems the seizures are milder and more brief. Only time will tell. We are headed to Detroit this summer for more testing. My fear? more surgery. Bigger fear? no surgery, no cure

October 20, 2004
Alex is not doing too well. The last week has been rough. He has clonic drops throughout the day that catch him off guard. This seizures have caused his face to fall into his food at dinner, to bang his head into coffee tables, etc.. We now have him wear a protective helmet.

Alex is no longer on the ketogenic diet. We decided to take him off because his seizures never stopped and because they were getting worse and more frequent. We felt the results we were getting weren't worth the hard work and the depriving him of his favorite foods.

He is now on Gabitril, one drug we haven't tried. His behavior is worsening. He is non-complaint and defiant. He "shuts down" when a demand is put on him so it's hard to teach him new things :-(

We are looking into more surgery and in the meantime going through a difficult time. I'll keep you posted...

February, 2005

We went to Detroit in December and found that Alex could use more surgery. There is no guarantee that he'll be 100% seizure-free again, but we can't sit around and wonder "what if" the rest of our lives. We scheduled the 2-part surgery for February 22 & 25.

Ironically , he's doing better than ever this month. He hasn't had a GTC seizure since Jan 5th . However he continues to have 3 or more clusters of myoclonics every day without fail.

In December we took him off the Gabitril to provoke seizures during our stay in Detroit. Believe it or not, he did better and his drop seizures stopped. It was the medication all along. He's now on Trileptal and is doing well. He has been talking a lot and saying words he hadn't said in over 1 year. It's like he's coming back. This is great news, but makes it hard to think about surgery. Should we still go through with it? Our hearts are so heavy. Decisions are so difficult to make when you're making it for your child who can't speak for himself. Alex has gotten better then worse many , many times before and we've decided to go through with surgery. We've postponed it twice before because he was doing better only to have Alex get worse weeks later. Seeing how well Alex is doing after weeks without any GTC (grand mal ) seizures gives us hope that surgery will make things even better.

March 2005

We are back from Detroit. Alex had all that was left of the left hemisphere minus the motor and sensory cortex removed. We were very fortunate that they were able to spare the motor cortex.

At 14 days post op today he can walk , is finally eating well, and is giving us more smiles.

He hasn't had ANY seizures in almost 2 weeks. He had a seizure the second day after surgery, but they say it was probably due to swelling in brain after the operation. It doesn't mean the surgery wasn't successful.

So far so good!!!

January 6, 2006
Happy New Year!!
This is the happiest New Year in a long time for us. Alex is doing great ! His brothers are doing well too. We had a wonderful Christmas.

SEIZURES: Alex's seizures are very mild myoclonics. He seems to have them mostly in the mornings and not every day.

MEDS: Trileptal (since before surgery) and we just added keppra for the myoclonics

Learning: Alex is learning so much. He just had a big growth spurt in the last 2 weeks. He can identify almost all the letters of the alphabet. He calls his classmates by name. He says, "No, thank you" and "excuse me." He has added quite a bit to his vocab. We are now working on toileting. We're seeing progress. wish us luck!!

January 14, 2008
Happy New Year to all!!!

We all had a wonderful Christmas. Alex actually loved ripping open presents! He really got it! He understood that the gifts we gave him to open were for him and he enjoyed it.. it was fun to see.

Seizures: Unfortunately, even after 2 surgeries (one in 1999 at age 15mos and one in 2005 at age 7) he continues to have mild seizures almost daily. In October, he went 32 days seizure-free only to have a GTC.. the first convulsive seizure in almost a year. He then had 3 of them in one night after falling asleep. We went up on his meds and we haven't seen any more....phew!

Meds: Trileptal and lyrica

Learning: Alex knows all his letters, colors, and is putting more words together in his sentences! He actually has long conversations with us. I'm guessing he's at about a 4-yr-level. I need to get him evauated to see just how he's doing, but I know thatfor him, he's doing excellent. He is now telling us about things that happen at school... unbelievable!

Alex went 19 months after his surgery in Feb 2005 without any convulsive seizure. Then he went 10 months before we saw the next. Then 16 months. So, we can say the second surgery was very worth it. He also is learning so much! We can't get over his conversations.