I hadn't realized that it has been so long since my last post.
Rayleigh is now taking 1/2 pill of Clobazam in the morning and 10ml of Phenobarbital at nighttime + 1 full pill of Clobazam.
She has been on this Clobazam dose for about 3 weeks. We are seeing a decrease in seizure activity but not as much of control as we would have expected by this time. Bug is having 1 seizure every 2-3 days now. The past couple weeks she went 3 days with a seizure each day, 3 days with no seizure, 2 days with a seizure each day, 2 days without, and then she had a seizure today at naptime. There seems to be no pattern and no explanation.
We have called Dr. Coleman's office and left a message to see if there is any blood test that he can order (or have Dr. Hernandez from Cook Children's Hospital order) to check her Clobazam levels. Rayleigh is growing like a weed so we need to find a way to keep on top of her Clobazam dose increase.
If we can get them better controlled soon we will be looking into the Ketogenic Diet.
On the plus side, Bug is making excellent progress in her development. She is using her eyes much more and getting really good and watching what we put in her hands and tracking us. She is still not sitting independently yet but she is getting closer. She is, however, standing at a table or the couch all by herself!
The last blog post left off when Bug starting having seizures each day again. She was having one seizure a day. They were becoming unsettlingly routine; every day about 15 minutes into her first nap long nap of the day.
Though the seizures remained fairly mild, we worried every day that they would get more intense and start to become painful to her.
Over 2 weeks ago we spoke with Dr. Coleman and he reinstated that he really did not believe the dose decrease of Phenobarbital by 1ml a night would cause such a drastic breakthough and so quickly affect her seizures. He said that if the Phenobarb decrease was the culprit that the seizures wouldn't start back for a few days after the first lower dose and they would start gradually, not daily at first.
Dr. Coleman suggested we call Dr. Hernandez (Rayleigh's epileptologist at Cook Children's Hospital) to see if it is time to raise the dose of her Clobazam. Clobazam is the pill form anti-convulsant medicine that we receive through Canada because it is not yet FDA approved.
We left a message with Dr. Hernandez's office about Bug's current weight and seizure situation and they called back that same day saying that Dr. Hernandez has changed her prescription on Clobazam to 1/2 pill in the morning and 1 full pill at night. This is based on her weight gain since the initial dose of 1/2 pill twice a day.
We started that dose that night. It has now been 2 weeks. She has been 2 days seizure free. We think that we will see a gradual decrease in seizure activity from this new dose of Clobazam much like when we first started the medicine. In the beginning of Clobazam it took her seizures down to 1 every other day, then 1 every few days, then 1 in 4 days and then they went away all together for several days at a time, until she had her breakthrough... most likely from her weight gain outgrowing the Clobazam dose.
We will have to continue waiting to see if this new dose is the key. Michael and I would still really like to get Bug weaned off Phenobarb completely to see if her developmental delays improve. Hopefully that is in the cards for her soon.
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!
I know this is kind of jumping back a few months but I want to get Bug's 1st Halloween experience blogged before I go to her Thanksgiving and Christmas.
This year Halloween fell on a Sunday. In Oklahoma City, like many other cities, trick-or-treating was done the night before.
Michael is a Halloween fanatic so our front yard is always decked out for all to see. Rayleigh had a fun time sitting outside with me watching Daddy put out all of his decorations the first week of October.
I made Rayleigh's Halloween costume this year. She was a ladybug naturally! She wore a black long sleeved onesie with black tights and shoes and then the big fluffy tutu and wings that I made her.
On Saturday we thought it would be fun to take Rayleigh to PicturePeople and get her pictures done in her Halloween costume. Well, she was hungry when we got there so while we waited for our turn I went ahead and fed her, but then she was tired. We got 2 pictures out of her before we even got her costume on her and realized it just wasn't going to happen so we rescheduled for the next day, Halloween.
So we went on home and took a nap. When she woke up it was time to get her in costume and pass out candy. We had quite the crowd this year thanks to Michael's scary graveyard out front. Everyone that came to the door gushed about how cute our little ladybug was!
On Halloween day we got up pretty early and got Bug in costume and went straight to see her Gamme. We spent some time there visiting and getting some pictures in her costume before heading to PicturePeople for her appointment. This time was so much better and we got several cute pictures!
Michael had to work Halloween night so Lovie & I took Rayleigh up to the hospital to visit her Aunt Savvy who is a nurse in the ER there. Her Aunt Savvy showed her off and bragged about how cute she is!
After that I went with some good friends to Haunt the Zoo with Rayleigh Bug! She had such a good time seeing all the people and lit up Halloween decorations! One of the zoo volunteers told us that Rayleigh was the cutest ladybug of the night by far!!! And that means a lot to us because there were a ton of ladybugs there!
Rayleigh had a wonderful and busy First Halloween. Maybe she'll grow up and be a Halloween fanatic like her daddy!
Because Rayleigh qualifies for SoonerStart in her motor skills we opted to have one of their physical therapists come and work with Rayleigh once a week until she is 3 years old or until she catches up.
We got paired with Stephanie from Oklahoma County SoonerStart. She is awesome. I get along with her really well but, more importantly, she is great with Rayleigh and very patient. We set a goal of having Rayleigh crawl by November 2011 and pay more attention to toys presented to her.
Our current exercise that we work on is getting Rayleigh to sit alone. Rayleigh will sit completely unassisted for about 5-25 seconds but then once she realizes what she's doing, she arches her back to get out of the sitting position. This is something that we've had a hard time getting Rayleigh to stop. Anytime we do her sitting activities she will fuss and arch her back to try and stop us.
We've been working with Stephanie for almost 6 weeks now. She has shown us so many new ways to work with Rayleigh on sitting by herself that we never would have thought of. Along with sitting, we are working to get Rayleigh Bug to use her hands and arms to prop herself up. This helps her learn to sit on her own and is great for doing tummy time also. One thing that little Bug enjoys as far as propping goes is to get one of the couch cushions down on the ground and have Bug kneel over it. Knees on the ground, belly on the side of the cushion and chest/arms on the top. Then we just put a musical or light-up toy in front of her and she props herself right up to check it out.
We definitely see the potential in Rayleigh but we were really hoping she'd be sitting by Christmas. Who knows, there's still 2 days, maybe she'll pick it up as a Christmas present to everyone including herself!
When Rayleigh Bug was about 5 months old Michael and I noticed that she was hitting her milestones, but that she was hitting them at a slower pace than expected. Our main concern being her complete lack of reaching.
We are members of the OPAT program (Oklahoma Parents as Teachers) and our parent educator, Marilyn, suggested we have SoonerStart come out and do a development assessment on Bug to see if she qualifies to have them come on a regular basis to work with her and get her better caught up.
SoonerStart has a free developmental intervention program designed to work on children's delayed areas. To qualify, the child must be younger than 3 and needs to be behind 25% in 2 different fields or 50% in 1 field.
We had Marilyn set up the first meeting with SoonerStart and Bill came as our representative from SoonerStart to do all of our paperwork and ask all the usual questions. He asked things like, "Was she premature?" No. "Where do you feel she's lacking?" Motor skills, not reaching at all and not really interested in toys. "What health conditions, if any, does Rayleigh have?" Epilepsy, nothing else. And so on.
A week later, a couple of women from SoonerStart came to do the developmental assessment to figure out how behind Bug was and if she would qualify for the free program to get her back on track. This visit was also a lot of questions but they also examined and played with Rayleigh. They checked her tracking, her interest, her head/neck/torso strength and her milestones up to date. They asked about her language so far, her eating and sleeping habits, what she enjoys looking at most, how she lets you know what she wants and what we feel she needs work on.
Rayleigh was considered appropriate for her age in all areas except motor skills. Just as we suspected.
She had just turned 7 months old the day they did the evaluation. The evaluation concluded that Rayleigh was 2-4 months behind overall in motor skills. Major things lacking at the time being her gross motor: sitting, crawling position, & raising head during tummy time.
They said that these delays could be from anything. Her Phenobarbital medicine, the seizures, an underlying thing with her epilepsy, or something different all together.
The women said the test showed that she is delayed enough in this area to qualify for a physical therapist to come weekly or however often we choose to work with Rayleigh on her motor skills. They said that Bill would call us that week to get the first meeting with the physical therapist scheduled.
I'd be lying if I said that Michael & I were not disappointed when they left. As parents, we want the best for our baby girl and want her to be as normal (whatever normal is) as possible. We are now devoted to getting her motor skills caught up, by doing whatever it takes!
