One tooth down...

>> Wednesday, February 24, 2010

...whole bunch more to go.

We were getting ready to eat dinner, I placed his plate in front of him and he looked up at me. I saw a black spot in between his bottom teeth and said:

Are you missing a tooth?

I walked around the counter and sure enough...tooth...gone. In it's place I can see the new tooth. Maybe it's a silly thing but I am so excited about this I can't begin to explain. I suppose that it's a spot of normal in what is not actually normal. Or it's just that he is my first born, and my little prince. Either way...


And he swallowed it. :)

It was there before we went to Walmart and there while we were walking around, he held my had the entire time and didn't sit in the seat, he even pushed the cart for a while, and smiled at me. He smiled at me a lot. I would have noticed it if it was gone then but it wasn't. We came home, he played on the floor while I fried things for dinner and then I put him in his seat and the rest is history.

Of course I searched the floor, the car, the toys, the couch, his chair, his plate of food, NADA. He had to have swallowed it and I am not that dedicated to get it back. But just in case anyone wants to see how cute he is I have the picts. He was yawning and yes, he still has a runny nose. Sorry for the gross but it is completely cute anyway.


Morning Update - February 24, 2010

2 events

Bug got his medication at 8pm and had a tough time going to sleep. When he did fall asleep it was fitful. He had his first seizure at 10:57. It lasted less than 30 seconds and he recovered almost immediately. He fell back asleep within 10 and had his second event about 30 minutes later. It was less than 10 seconds and not a full T/C.

We took Daddy to the airport at 7:00am and Bug did not go back to sleep. He usually does but apparently, not today. He ate well and went to school at 9:30. Hoping he doesn't take a nap on them today since his teacher is out sick but if he does, he does, there is a great staff there should he have a bad seizure and they are across the street from the Hospital so I won't worry...

too much.

175mg Lamictal PM
8ML Keppra PM
150mg Zonegran PM


Morning Update - February 23, 2010

>> Tuesday, February 23, 2010

2 events

Bug received his medications 8pm and had his first T/C at 10:45pm. He was asleep and it lasted less than 45 seconds but took almost another 2 minutes to fully come out of it. He fell back asleep after 5 minutes.

His second was at 7:45am. He was asleep and it lasted less than 20 seconds. He went back to sleep almost immediately.

175mg Lamictal PM
8ml Keppra PM
150mg Zonegran PM


Morning Update - February 22, 2010

>> Monday, February 22, 2010

No events.

We sent him to school letting them know that he MAY seize at any time. Gave him 100g of Lamictal before he walked in the door of the school. Fingers crossed.

175mg Lamictal PM
6.5ML Keppra (there was a mix up and we need to get more today) PM
125mg Zonegran PM


Morning Update - February 21, 2010

>> Sunday, February 21, 2010

No events.

After the day before, I made sure Bug was with me *all the time* and i can safely say, he didn't have any seizures. Day or night.

He was playful and smiley all day yesterday and did really well when we took him shopping in the afternoon. His curiosity is increasing and he is exploring new things. He loves to run with his sister again and is very patient with her when she drags him around. It's good to see.

100mg Lamictal AM
175mg Lamictal PM
8ML Keppra PM
125mg Zonegran PM


A sad new chapter?

>> Saturday, February 20, 2010

Last night was a total bummer.

We suspected that Bug might have had two seizures in the last week that were awake seizures, last night confirmed it.

At 7:04 Bug had a Grand Mal as he was running around in my boots. Luckily he began to lock up before he fell, so he just sort of bent over and then sat down, eventually rolling onto his back. Still, it sucked A LOT.

After it was over, I noticed that his pupils were not equal. Both were responsive to light but his right eye was more dilated. This REALLY SUCKS A LOT.

Monday I will call his doctor and try to get him back in to get a new EEG and MRI, at this point I am terrified of a slow growing tumor.



>> Tuesday, February 2, 2010

Ah, the ABR.

I was anxious for the ABR. I had been for months. This test, this ONE test that I had asked about for so long was finally scheduled and Bug was sick. I was concerned that he was congested but I took him in and let them decide if he could be sedated. He passed the physical with flying colors, as always, and he was given a syringe full of happy juice to help him sleep so we could find out if his brain responds to sounds.

The ABR, Auditory Brain Stem Response, test registers the brain stem response to auditory stimulus. Since Bug hasn't EVER talked much, we were told it was most likely the seizures. But every EEG, every CAT scan, every MRI, ever showed any interaction or intrusion upon, the speech centers of the brain. I began to ask Doctors to treat them as separate issues when we first went to UCLA when he was 5. But, Doctors, especially Neurologists, know better. Phffft.

So they gave Bug the happy juice and told me: It will take about an hour. Press the Nurse button when he goes to sleep and we will get the stuff attached.

15 minutes later, Bug turned to me with the drunkest look I have ever seen on a child. It said: I love you man. And he began to fall asleep. He TRIED to fight it for a few minutes but gave in with a final smile a full 20 minutes after ingestion. I pushed the button, the wrong button, and waited.

A few minutes after he fell asleep, Nancy the Audiologist came in and noticed he was asleep. She asked: Did you press the button?

I said, Yep but no one has come in yet. To which she reached over to a different button with a picture of a nurse on it and a minute later, the nurse came in. Great, I am dumb.

Bug was hooked up to the B/P, heart rate and O2 monitors and they put little tube-like things in his ears, one electrode behind each ear and one on his forehead. After he was all hooked up he sighed. I smiled. That sigh is a tell tale that he is in deep sleep.

Nancy started the test.

She had told me it would take about 30 minutes. It took an hour. She repeated one test a few times. Turns out there IS an anomaly. Two in fact. Once the test was done, Nancy took the time to print it out and explain it to me.

The ABR registers three waves from each ear. His left ear is minus wave I. She had never seen that before so she repeated the test 2 more times. All three times, no wave I. Nancy said she was not sure what that meant but she would research it and we would go over it with his ENT, Dr. Munz. He CAN hear though. His brain is registering sound. This is good. And all the sound is within normal ranges, this is VERY good.

His other problem, could be the kicker. She tested his middle ear response after the ABR. Neither ear scored as normal. In fact, his right ear showed NO response, his left BARELY moved. This information excited me and saddened me. It could mean that he has a type of hearing loss. The middle ear translates fluid wave into air waves. If is isn't working, noises can sound like they are under water. More tests are needed. If his middle ear shows no response on any further tests, tubes could be inserted to help him hear properly. Only thing to do is continue testing and wait. Argh.

So, after the test was complete, we tried to wake him up. Two hours later, I was still trying to wake him up. EVERY time I tickled him, or lifted his shirt to make his tummy cold, he would slip into deeper sleep. The nurse thought it was funny. I did too and we waited.

I sat him up and at 4 hours post happy juice ingestion he began to wake up. An hour after he awoke, we went home. As soon as he got in the car, he fell back asleep. I put the chance of seizure at 50 percent but he didn't have any. Not one. It was good. When we got home, he was pretty awake and ate a little. While he rested, I researched. I cried a little and I hoped this was the answer.

So we follow up with Dr. Munz on March 15Th. I MAY get him into his pediatrician earlier than that, just to see if he wants to tests his ears too. That, and I am impatient.

Bug was a little trooper and I can not begin to let myself hope we may have a little boy that just can't hear properly who has seizure disorder. My brain has been working overtime analyzing all his behaviors that could simply be he doesn't understand the explanations given to him about why he SHOULD NOT do them. It can't be that easy, but it certainly could help him A LOT. Again, just waiting and praying.


What a Seizure looks like (Graphic Content Included)



Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

  © Blogger template Simple n' Sweet by 2009

Back to TOP