Audrey and Nathan Clements

We almost skipped Easter this year and I would have expect for we ran out of food so I went shopping on the Saturday night before Easter and picked up a couple of cheap toys.  The hardest thing about doing Easter was trying to avoid artificial coloring, so no big colorful candy and no dying eggs as about of the Feingold diet.

Thank goodness I did pick something out to fill their baskets because Hailey asked all day when we could go on an Easter egg hunt.  I set it up in the 4th bedroom, so here they are waiting in anticipation.

This game also went pretty smooth. One of the funny moments is when all four players from Robert's team went to guard the goal (there are no goalies at this age) by lining up in front of it and the other team still made it in.  One time Robert and Annabel (the coach's little girl) when behind the goal to guard it.

Robert is really enjoying soccer now. He plays when it's his time and he is okay with sitting out when needed.  I enjoy watching him play especially when he gets distracted by something.

Unfortunately, the weather doesn't change into nice spring/summer weather just because it's soccer season.  It's been a very wet and chilly spring. We actually had tiny snow flurries coming down today. However, that didn't damper Robert's spirits and he played the whole time.

Robert did a lot better at this game. Robert played for four minutes, then sat out for four.  Then played again for four, sat out for four. After that it was half time (two minute break). And here is where we had some problems, the coach changed the line up so Robert needed to wait another four minutes until he played.  This didn't work out well for him, and he just wanted to play at the playground.  So he was on the timeout bench for the second half of the game.

This is what Robert did during his first soccer game. He the first 5 minutes fighting about having shin guards on.  Once they were on, he spent the next 10 minutes refusing to have his shoes on. Even after they were both on Robert wouldn't play. The day was pretty cold and we were at a lost on how to encourage him.  He had practice that Thursday and did just fine, so this was a surprise to us.

Background: Sunday was the first day she went to nursery. She doesn't turn 18 months until May 16th but Nathan was teaching and I'm busy in Primary.  That night Hannah was coughing and wheezing pretty bad that we woke her up around 11:00pm to check on her.  I wonder if she got a virus at nursery though she was very happy there.  We were very worried that Hannah would go into a seizure that we moved her into our room after we called the on-call doctor to get suggestions to help Hannah breathe easy.  We gave her Tylenol though she didn't have a temperature above 99 degrees. Nathan also took her outside so she could breathe in the cool air.  She had a humidifier going in our room.  I couldn't sleep because I was too worried about her but Hannah was fine. On Monday, Hannah didn't have much of an appetite but she wasn't coughing anymore and was acting fine.  Until night time again. She wasn't as bad as the night before and stayed in her own room. We were still concerned for a seizure but it never happened.

On Tuesday, Nathan and I took Hannah to Primary Children's Hospital in Salt Lake City, Utah to see a specialist.  We were very fortunate that a friend here in Pocatello took Hailey and Robert all day.  We were told that they all played nice and there was no trouble. This is finals week for Nathan, but he was able to find a way to come with me.  Hannah was very fussy all morning and had to be held constantly. She fell right to sleep in the car which makes a 2 1/2 hour car trip very nice.

We saw Dr. Helen Barkan who we really like at 1:00pm. She told us to get a copy of the EEG that was done at Portneuf with her first seizure. However, they sedated her for the test which pretty much voided the test unless they used a certain drug.    She also said that a minute seizure was long. I feel like a minute is long too but when I took her to the ER or to the pediatrician they act like it's nothing because there was also a fever involved. She also gave us a prescription for suppositories to stop seizures when she has them so we don't have to continue to go to the ER.

The doctor also asked if Hannah has any physical spots that are different. It made me realize that Hannah has no type of birthmark at all. Robert does with his little white spot of hair but neither girl has anything.  Also asked if anyone in our families has a history of seizures.  My mom's brother, Uncle Mark, had epilepsy as a child and grew out of it around 4-5 years old.  Epilepsy can be hereditary and the doctor sees this as a strong link but Nathan and I feel like it's pretty weak since it was an uncle and no my own parents. Even if one of my parents was diagnosed with epilepsy it is only a 4% chance that one of their kids would get it.

We were able to have an EEG testing done at 3:00pm that day.  Within the hour of waiting time, Hannah started during her 1 second twitches off and on.  Some are more violent and pronounce then others but they are all full body.  It's like her body has a hiccup, and it makes me jump when she has one.  While Nathan went to get her bottle from the car and I was trying to keep Hannah awake, she started throwing up a lot in the waiting room.  I was surprised how much came out when she hardly ate for us.

This picture below is from when she fell asleep on the couch during her weekend of seizures. This is right before she had her first seizure occur during sleep.  Poor baby looked this sick on Tuesday also.

I forgot my camera so here are pictures from our phone.  She fell asleep as the techs were hooking her up. They gave us a button to press when Hannah convulsed which she did at 4 times then had one big jerk and was done.  We were sure she was going to go into a full seizure, which would be good since she was being monitored but didn't happen. The doctor called us within 10 minutes of the testing and said she's been watching the computers also and we should increase her night time dosage to 2.5mL since she is having so much activity while asleep. 

After 30 minutes of observation, they did a strobe light testing which bugged her at the beginning because she wanted to sleep, but so ignored it.  So we know that strobe lights, bright lights, or TV doesn't cause Hannah seizures.

Hannah peacefully slept in the car.  Around 5:30pm we stopped in a small town before Brigham City for Subway.  Hannah seemed better after her nap and was even walking around a little.  While I was holding her at the table she had about 3 convulsions in a 5 minute time span.  Then nothing for 15 minutes or so.  I left to go potty while Nathan cleaned the table and Hannah was walking around.  When I came out, Nathan was holding Hannah on her back and was counting. Hannah had another seizure.  It lasted 45-60 seconds and luckily Nathan was already holding her at that point so she didn't fall down.  She did a couple of second convulsions before she went into a full seizure.  Since there's nothing else to do, I tried to really observe how her shaking was.  There legs and arms, jolted rhythmically all together. Her eyes were closed and she was drooling, Nathan had her lips slightly apart so that the would drool came out. When she came out of it she didn't really wake up. She might have opened her eyes that there isn't much reaction from her besides that. She also started shaking like she was cold. 

She we entered the doctor's office around 1:00pm, Hannah's temperature was 97 something. After Hannah's EEG her temperature was around 99. After the seizure, she didn't feel really hot anywhere so I doubt she was even 101 degrees.  So there was no high fever or rapid fever change attached to this seizure.

Nathan called the doctor's cell and was able to get a hold of her very quickly.  She told us to up the dosages again and that we are still at low amounts for her. Keppra is a "new" drug only 15 years old and no one is sure of the long term effects of it at this point. Generally the most common reaction is a change in behavior, but we haven't seen that in her yet.  She also mentioned that this is hereditary and she should out grew this but that pin pointing the type of epilepsy is complicated.  She doesn't fit nicely into any of the categories.  Most likely the 45 minute seizure and the single silent seizure throws off the diagnosis.  We will see the doctor again in 2-3 months. We were also told to video record a seizure if we could.

We continued home without any problems, picked up the kids around 7:30 and everyone was asleep by 9:00-9:30pm.

It was a long day but hopefully, the doctor has enough information to further guide us in how we can help sweet Hannah.