I found out I was pregnant with Peanut when her older sister Ali was exactly 3 months old. Talk about a surprise! I had an easy pregnancy other than the pre term labor which started at about 22 weeks. We did manage to keep that under control until about 34 weeks. Peanut was born on December 11, 2003 at 34-35 weeks. She weighed 6lbs 2oz and was 18 inches long. Other than needing oxygen for a few hours she was fine and went home with us.
After birth:
Peanut always seemed to be very different in comparison to my other daughter which I expected....but I expected Peanut to be more alert, more active, and to develop faster and she didn't do any of the above. On the contrary she was doing everything slower than I had anticipated.
I knew practically from birth that Peanut had reflux. She was fussier than my older daughter, and spit up a lot at first. Gradually the spitting up decreased but you could still tell she was definitely refluxing. It bothered her so much that I knew it had to be pretty painful. We tried Zantac with no success and it was more trouble than it was worth so we tried Prevacid. It still didn't seem to help at all. We tried different formulas, everything and finally gave up and waited for our appointment with the GI doctor.
From birth Peanut always looked to her left side and tilted her head to the right. She also "zoned out" alot. Where she would just sit there and stare into space like she was very tired. It was there from day one. She also startled very easily, the smallest noise would make her jump. I was told this was common with premature infants and that it would go away.
As Peanut got older I became more concerned. She finally rolled over at 5 months and was smiling a lot. That temporarily eased my fears. But it was also about that time that I started noticing other things. I started noticing that when she would startle like that she would zone out right afterwards. And soon after that she would start crying. The crying got worse as time went on...she would cry harder and for longer periods of time. I also started noticing a left sided weakness. She didn't grab or reach with her left hand, only her right. She still wanted nothing to do with sitting up. Then there was the arching her back a lot, and just constantly being so tense. When you'd try to play with her you couldn't sit her on your lap because she was so tense you thought you were going to break her legs.
Then one day when she was about 5.5 -6 months old she was in her swing, and she startled and then zoned out. It lasted longer this time, and I couldn't get her to respond to me. I tried to take her out of the swing and she was completely tense, I couldn't even get her out. Once she came out of it she was screaming as usual. The screaming was happening more and more, and she was smiling less and less. She wasn't hardly ever just content...she was either eating, sleeping, or crying. A lot of this was blamed on her severe reflux, as many of these are symptoms of it.
It was that day in the swing that I really began to make the connection with seizure activity. It all started to make more sense to me. My brother and I both had seizures when we were young, so I can not believe I didn't catch it sooner. After that I immediatly became concerned and started talking to her Pediatrician about the situation. He pretty much said let's wait and see what happens. I was not happy about that but let it go for the time being, until I got her into another Pediatrician.
After realizing what these episodes were I was really able to judge how often they were happening. I was noticing them several times a day but unable to connect them to anything. They didn't always seem to be triggered by light or sound...although there was times they appeared to be. As time went on she got worse, and they were happening more frequently.
Then when she was 7 months old I was putting her to bed one night. I laid her in her crib and went to make her a bottle. I came back and she was completely rigid. She was so tense that her whole body wasn't even touching the mattress. Her eyes were wide open and she started to twitch pretty violently. I immediatly recognized the grand mal seizure and thankfully knew how to react. As I reached in to turn her onto her side she started to turn blue. I moved her tongue out of the back of her throat, picked her up and ran for the van. When I got to the hospital she had come out of it screaming. They were concerned with her large head (95th percentile while length was only 50th percentile and weight was barely 10th percentile.) and did a CT scan to rule out Hydrocephalus (water on the brain.) The CT came back normal and the ER never called in Neurology to see us. They had us schedule an EEG and MRI for a couple of weeks later.
After the grand mal seizure I was terrified it would happen again and I immediatly started trying to get her into Neurology and on some medication to prevent it. The MRI came back normal a few days later but the smaller "absence" seizures were still happening. Then we went for the EEG and during the actual EEG she showed no signs of seizure activity that we could see outwardly...such as zoning, twitching, ect. When we got the EEG report it was definitely abnormal. She was having a rare form of epileptic seizures in the right frontal lobe of her brain.
This made complete sense to me! The left sided weakness, the gross motor delay. Yet she babbled like any other 7 month old should...because the left side of her brain isn't affected. It made complete sense to me. After that I really pushed for medication but the Pediatrician wasn't comfortable giving it to her...and Neurology couldn't see her for 3 months. As time went on she was getting worse and worse, weaker on her left side, still not able to sit up at 8 months old. Not anywhere near crawling because when she got into all fours she fell over because her left side couldn't support her. I couldn't get her to eat solids either. And she was just always crying when she wasn't having a seizure. And the seizures were becoming more and more frequent.
I took her to the Pediatrician that I went to when I was younger. He tried to get ahold of Neurology to find out what medication to try her on since she has a rare form...he wanted to make sure they didn't want her on a special one. When they didn't call him back within two days he told us to just take her to the ER. So we did.
That Wednesday afternoon she had 5 seizures in less than 2 hours. I put her in the van at 2:30pm as she was having another one. I picked up my mother and at 3:15pm she had another seizure. She didn't completely come out of those until 5pm. At the ER they immediatly decided to admit her, draw blood, and medicate her. And to observe her overnight.
They gave her the first dose of Phenebarb through IV that night. She slept for a few hours, and then they kept poking her and everything all night so she didn't get a whole lot of sleep. We saw Neurology the next morning and they informed me that some bloodwork had come back abnormal. Her liver enzymes were very high so they wanted to keep her to do further testing. They gave her another dose of Phenebarb that morning.
We ended up being there a few days, and we are still looking into the liver enzymes. Although liver enzymes can be elevated from seizures they said these were way too high. So far the Phenebarb has not affected them negatively, in fact the liver enzyems have gone down since she has been on it.
We left the hospital a few days later with a completely different child than we took in. Peanut is now sitting up unassisted. If she falls over she catches herself now, except on her left side which we are still working on. She is trying to pull up to things. She is getting into all fours and rocking back and forth constantly. She even gets onto all fours and then uses one arm to try and open cupboards or play with a toy! She is eating 2-3 meals of baby food a day. And she is back to being the happy baby that we knew was in there. It has been absolutely incredible to see the change in her since the medication.
We have moved the Phenebarb to night time now. She gets a pill crushed up in baby food. We also started Prevacid again and are trying it in the powder form instead. We just open the Prevacid capsule and put the powder in food for her. Much easier than trying to force liquid down her in a syringe. The Carafate is the only thing she isn't getting in her food since that has to be given seperately. It is supposed to coat her throat to help her erosions heal. We are hoping that between the seizure meds, and the reflux meds that we can get her really happy. We also have a Tucker Sling in her crib which allows us to elevate her mattress yet doesn't allow her to slide down to the bottom. Right now she is on a Hypoallergenic, Amino Acid Based formula to rule out any allergies. We will probably be switching that in a few days, we just wanted to get all the medications established before we switched formula on her too.
I had no idea that seizure medication could make such a difference, and I am very hopeful that with the coordination of all of the doctors and monitoring of her liver that we can keep the seizures and the reflux under control and she can be a regular happy baby!
