This month has been a major roller coaster for our family. Rayleigh had a seizure on New Years Eve, December 31st, around 7pm that lasted about 40 seconds. It looked like her usual seizure: face reddened, arms locked up and pulled into body, legs locked up and curled in, labored breathing and then her deep release sigh and some myoclonic jerks as she was coming out of the seizure. It was intense and awful.
Then we started to notice her going several days without a single seizure. In December Rayleigh was having 1 seizure every 2-3 days. In the months prior to that she was having 1 seizure every day, maybe even 2 seizures a day but then late November she started the Clobazam anti-convulsant medicine. So starting January 1, 2011 Rayleigh went a full week without a seizure, then it was 8 days, 9 days, 10, 11, 12 days. 12 days with no seizure. Rayleigh was more alert and in a better mood all around. Michael and I were less stressed during naptime and when she would wake up.
Then around January 12th Rayleigh and I got sick. We were both running fevers and feeling awful. On that night Rayleigh got practically no sleep and ended up having a seizure around 2:30am. The seizure was very small and short and Rayleigh didn't seem to be in any pain from it. We were upset that she had a seizure because a small part of Michael and I had thought she was outgrowing them but at the same time we knew it was likely. Dr. Coleman, Rayleigh's pediatric neurologist, had told us before that anytime she is stressed, sick or sleep deprived she is more likely to have a seizure than other times.
Then she went a few more days without a seizure. By January 19th she had only had the 1 seizure. Michael and I were ecstatic. We were sharing the news with everyone, "Rayleigh has only had 1 seizure in 19 days!"
Maybe we jinxed it.
On January 20th we had a regular checkup with Dr. Coleman. We told him the news and asked about weaning Rayleigh off the Phenobarbital to see if the Clobazam was doing all the work. Phenobarbital has a lot of side effects that we think are affecting Rayleigh's development and would love to have her off Phenobarb completely. Dr. Coleman thought the request was more than reasonable and said to wean her off slowly, 1ml less each week. Rayleigh was on 12ml a night at that point so that night we took her down to 11ml.
She takes her medicine each night around 8:30pm.
At 11:30pm that night Rayleigh had been asleep in her bed for 15 minutes. I went in there to adjust the monitor before going to sleep myself and saw that Rayleigh was waking up. I bent over to give her the plug-plug (pacifier) and she went into a seizure. My heart stopped. I grabbed her hands to make sure that she didn't scratch her face and called to Michael.
It was not very intense like her old ones were. She didn't make any noise going into it, her face didn't really redden too much, arms and legs locked up and curled into body, the whole thing only lasted 20-25 seconds though. We brought Rayleigh into bed with us and she fell asleep shortly after. No whimpering or crying at all and didn't appear sore.
Michael and I were shocked. Is this from the dose decrease? Would we really see results that fast? Was she sleep deprived today? Was she stressed? What brought on this seizure?
The next day at 1:30p Rayleigh took a nap so I had her in the same room with me so that I could watch her. With how quiet the one the night before was I knew that I wouldn't have known she had one if I wasn't in her room at the right time so I wasn't going to have her sleep out of my sight. Sadly, she woke up and had a seizure about 5-10 minutes into her nap. It was identical to the one the night before and she went to sleep right after. I called Michael to let him know and he called Dr. Coleman.
Dr. Coleman told us that he can't really verify what's bringing them back on all of a sudden and doubts that the medicine dose decrease would affect Rayleigh so drastically so quickly. He told us to keep an eye on her and let him know if she continues to have them throughout this week and if so we'll increase her dose back to 12ml and see if that controls them again. Rayleigh has also gained a few pounds in the last couple of weeks so maybe she was outgrowing the dose of Phenobarb as we decreased the dose and it was just too much at once.
We will be taking her to get her blood drawn for Phenobarbital level testing this week to see if she is still in the normal range.
Rayleigh had one again this afternoon during naptime.
We went from 1 every 2-3 days to 1 in 19 days and now daily. We are feeling discouraged but are working hard to get her seizures controlled again.
Every doctor that Rayleigh has seen since she was about 3 months old has noted her plageocephaly. Plageocephaly is a flat spot on the skull. Rayleigh would never do tummy time for us and slept on her back at all times up until she turned 6 months old to prevent SIDS.
During her awake time we would try to keep her off her back but that was her favorite way to look around. When we would put her on her tummy she would scream and throw a fit until she would be back on her back. She learned to roll over very quickly so that she could get out of tummy time on her own. Once that started, we would have to turn to the Bumbo chair or have her sit on our lap to keep her from laying on her back. But still having her sleep on her back all the time gave her a flat spot on the back of her head, on the right side more than the left.
Dr. Albeik and Dr. Coleman both suggested we go to Hanger and get her a helmet to round out her head. You have to provide Hanger with a written prescription so Dr. Coleman faxed them one that day.
A helmet for plageocephaly is not covered by most insurances. Plageocephaly is considered completely cosmetic because there have been no researches done proving that having a flat spot causes any developmental delays or health issues in life. Plus our insurance is probably still upset about Bug's $38,000+ hospital bill from Cook Children's Hospital!
We went for her first appointment in November to make sure that she would be a candidate and get her measured. Jennifer is Bug's certified orthotist and did the measuring. She said that she is definitely a candidate but that her flat spot is really not severe. So much so that she has virtually no displacement on her face from the flat spot on the back. You can see examples of that if you look up images of plageocephaly on Google.
We went in for a followup appointment to get Rayleigh's head measured and scanned for the helmet. Jennifer put a little box on the top of Rayleigh's head and put a pantyhose sock over her head like a shower cap and used a scanner (like the ones used in retail stores) and clicked-and-dragged over Rayleigh's head in every angle. Then an image of Rayleigh's head popped up on the computer screen and looking from an eagle-eye view you can see the flat area on her head. Jennifer sent the image in to have the helmet made and we picked a fabulous leopard print for the helmet to be done in. From here, you have 2 weeks to decide if you are sure you want to get the helmet and when you are you call and give them the OK.
Michael and I debated whether we should get the helmet or not for about 3-4 days. The helmet costs $1,500 and we are already swimming in hospital bills. But we really don't want to give anyone down the road further reason to make fun of our beautiful baby girl! Plus we're always hoping that there is some miracle that rounding out her head will stop her seizures or at least help her development. Not likely, but it would be awesome...
Anyways, so we obviously decided to go ahead and get the helmet. I went and picked it up a couple of weeks later and it fits great. The way it works is that where her head is already rounded the helmet will touch the skin and it will hollow space between her flat spot and where the helmet is. It allows the skull to grow to its environment.
Rayleigh hates the process of taking it off and putting it on but once it's on she's just fine with it, thankfully!
At the 1-week checkup Jennifer said that Rayleigh is looking good, no red spots or anything like that. She also told me that because Rayleigh is small for her age (25th percentile) and her head is still pretty soft that she doesn't see Rayleigh wearing it as long as the average 8-9 months. We're shooting for 4-5! She has to wear it for 23 hours a day but she can take it off for special occasions as long as we keep her off her back during the time it's off.
It's only been a couple of weeks but Michael and I can already tell a big difference! Maybe she'll just hit a growth spurt quickly so her head will round out from it and she won't have to wear it long at all!
