Friday, November 13, 2009

Fragile X Friday: Visit to Mind Institute @ UC Davis with Dr. Hagerman

We went to the UC Davis Mind Institute about a month ago to see Dr. Hagerman and continue our participation in the baby Study. We arrived and started out with the video experiment's first. I am not sure how much of this I have described in the past but briefly, it consists of Holly sitting on my lap and watching some video's. The computer tracks Holly's eye movements and records what she is looking out. There are several video clips, each a few minutes long. All pretty boring compared to the TV Holly is used to watching. Also this visit there was a new team of experimenters. They of course were really nice but I missed the old ones, they had history with Holly, knew her since her first visit at like 6 months old. The video is testing for several things, they explain it every time, but I can;t remember the details now. There is this dural thing that goes from the front to the back of the brain on the top and on the bottom, they are looking at the top one, and it has to do with perception of movement. So in some of the video's there were vibrating lines or boxes at different speeds, sometimes it measured if she even noticed the movement, other times one box would be out of sync with others and it looked to see if she noticed that. They also had a video with faces, upside down and right side up. Another one with sound and images to see if she would look to where the image should be when the sound was played. In between each we found some Yo Gabba Gabba video's from Youtube and she watched them and took lots of breaks. I thought she did terribly, as she needed to eat and snack and she wiggled and got mad and didn't want to stay on my lap and watch. But the experimenter's told me that she did amazingly, even when she was fussing or eating she was watching, and they reported many kids only get through one or two videos and I think she did like five of them, so they were excited.We hardly had time for a break before we had to go and do the Mullins, but I demanded that she get at least ten minutes to run around the playroom, or else I knew she would be too fussy to sit on my lap and participate. She did really well on the Mullins in my opinion, but there was a lot she didn't know. They gave her nesting cups again, and in the time allotted her she completed 3 of the4 which I guess is an improvement, though not a reflection of what I feel she can do. they did a very interesting thing where she put this large plastic coin into the top slot of a piggy bank, when they handed her the coin where it was upright vertical and the pig was in the same direction she got it in every time. But when they turned the pig so the slot was horizontal she did not figure out to turn the coin to get it in. She kept trying to push it in, but never turned the coin. I thought this was very interesting and it wasn't a skill I had ever though of, but then I remembered that she has this set of three books that go into a book holder and she likes taking them in and out, when it is aligned correctly it is a fine motor skill challenge to get it in, but when it is turned she wasn't able to do it, so I had observed this without realizing it. So now I knew it was something I needed to work with her on, which was a revelation.The other thing was they showed her some books with two or three pictures and then would ask her, where is the "Cat" or "Car" in many cases they simply were not words or items she had been exposed to or would know or has been taught so she had no clue, but it was also not an activity we had every really done, me asking her where is the "blank" she she got all of these wrong, besides the fact that she wanted to grab the book, play with it, and turn the pages. Another one was matching, which we kind of sort of had worked on, and at least I sort of taught her the word same. So the tester would put down a key and a car and then show her another key and ask her to point at the same or give her the same. She did about 50/50 on this I think, the problem is, both were out of reach and she wanted to explore and look at them both, so she would reach for both when they were pushed into reach, not listening to the request for same, but instead her own desire to look at the items. had the experimenter given her both items to hold and look at first, then shown her a match and asked, give me same I think she would have been able to do it. but in this scenario she didn't have the impulse control to not grab both. There were many other things she did, coloring, where they wanted her to copy drawing a strait line across the paper, but I was proud she even marked the paper at all. A few looking at her grasp, picking up small items taking things in and out of containers looking for hidden objects, but the ones described above where she struggled were the ones I remembered most.

After this we had another very short break, maybe less then 5 minutes before seeing Dr. Hagerman. Holly was very tired at this point. She was fussy and cranky. when we were last there she wasn't walking independently, so to see her running Dr. Hagerman was excited and impressed. She did a physical exam, chatted with us, observed Holly, and reviewed the early scoring of the Mullins.This is an excerpt from her report: "She participated in our Baby Study and had a follow-up Mullen. On the Mullen, she scored 18 months for her chronological age. She scored 20 months in visual reception, which is in the 73rd percentile. Her fine motor score is 16 months, which is at the 14th percentile. Her receptive language score is 11 months, which is at the first percentile. Her expressive language score is 8 months, which is also at the first percentile. This gives her an overall early learning composite score of 73"

When we were talking everything she said didn't sink in right away, some of it did while we talked further, some not until later after reading the report. When she said Holly was in the 1st percentile for language I didn't understand what she meant. All of my life I had been measured int he 99th percentile, top 5% so she had to repeat this three or four times before it sunk int hat she was at the complete opposite spectrum 1st percentile in language, meaning 99% of children her age are more advance, and what shocked me most about this, was at the time I was in fear of loosing speech therapy service. here a specialist is telling me she is concerned about her language acquisition and that she should be seeing a speech therapist 2-3 times a week, and I am fighting with the regional center to keep get her speech at all, and then to keep it, because her delays may not be significant enough, how these two things can both be possible in the same system appalls me when I think about the lack of services out there for children, and budget cuts, and getting the things she needs. the other thing that didn't sink in was that they called her borderline, as in intelligence, as in her composite score of "73" not realizing this was an early equivalent to an IQ test, and of course how could she score anything higher when she can't speak or communicate yet, but again that number or the fact that they were equating this to IQ took a little bit to hit me.
I am not saying that I am living in complete denial, but I have been working on the theory that she has the capacity to be main streamed in a regular classroom, and will graduate high school and all that Jazz. I am not saying I suddenly don;t think that anymore, I still do, but I am coming from a perspective of having an IQ of something like 137, and Joel's is even higher then mine. When I was pregnant, I realized that it was completely possible her IQ would only be between 100-80 is we were very lucky and she was in the top 10% of fragile X girls, but since having her, all her accomplishments really had me thinking she was right up there on the higher end, but then I guess compared to the language development of her friends, 3 months younger, she is much further behind. I also realize though, that this is hardly any indication to what her "scores" might look like at 3 or 5 or 10 for that matter. But it was also a bit of a shocker, wrapping my brain around a number. When I heard numbers like 12-14 month level, knowing she was 18 months, I was thinking well that's not even 33% that doesn't even qualify her for services, that's only a few months behind, but then hearing it in this different format sort of struck me differently. On a positive note, another thing that didn't sink in until I read the report, was that Dr. Hagerman was super excited that her visual processing scores were int he 73rd percentile, she was ecstatic and said that is rare in fragile X kids. I was thinking, hmmm... 73rd isn't so great, obviously better the 1st, but she sure is excited. When I read the report that that meant she was in the 20 month range, I realized that 50% is average, and 18 month range, so being above 50% meant she was actually advance compared to neurotypical kids in this one area. This was great news. While in the office, as I said earlier Holly was fussy, so I had pulled out my iPhone and we were looking at her flash cards and ABC Animal App, and Dr. Hagerman was amazed with these and said that we should do these with her several times a day and get video;s for her and that with such high visual perception scores she will be able to learn much faster in this way. Just tonight we put on Baby Einstein's My First Signs, which she hasn't watched for a while and we noticed her sitting there trying to copy the signs and repeat them, she was babbling in sign language. She couldn't quite get her hands to articulate the sign, but she would clearly be sitting still watching, then see the child on the scree make the sign, then try to do it herself, she would move her arms or hands in the same motion to replicate it, but didn't get her fingers in the right places. We were amazed. So this was a good thing.

The other major thing we discussed was her anxiety. Things that I described or even observed in the office as being fussy, Dr. Hagerman interpreted as her having anxiety. Exposure to animals, participating int he exam itself, issue with her personal space. Difficulties falling asleep, easily frustrated, even some lack of attention and focus. Dr. Hagerman explained that it was very common in Fragile X kids to have uneven levels of Serotonin production, and this not only deals with things like Anxiety but also language development. She indicated that there have been some studies done that upon starting a course of Sertraline (Zoloft) there is a language explosion. The notion is that if the serotonin levels are properly regulated, then when the back part of the brain is trying to communicate with the front part, traveling along these serotonin pathways there won;t be as much of a delay. A practical example of this is when we sing the Open Shut them song, Holly responds a verse after it is sung, so I will sing about putting out hand in our lap, but she doesn't respond with the action until I have almost completed the next verse about clapping, so she is off, because her processing time is so slow to think about what she want to do and then tell her brain and then for her brain to tell her hands, all of this supposedly can be helped with Serotonin. Also the thought is that if she had decreased anxiety then she won't get frustrated so easily and she will stick to a task and master it and learn. So we decided to give this a try.
Another excerpt from the report on dosage: " This would be the liquid sertraline which is 20mg/cc. I am recommending 2.5mg or 1/8cc by mouth each morning. If we do not see a result with 2.5mg, we may later increase this to 5mg each morning. The dose can be cut in half if she becomes hyperaroused or more hyperactive on the medicine. " So the amount we are giving her is really small, and it needs to be mixed with certain kinds of juice or lemon aid, so I have a 1/2 ounce medicine bottle that I am using. At first the medication said to mix it with 4 ounces of liquid, I thought that was insane, but read in someone else's blog on how they had to do that and thought it must be true, and wondered how on earth will I ever get her to drink 4 ounces of juice or lemonade. But after 2 days I called the pharmacist to ask if I could instead add it to formula, which i know she will drink 4 ounces of. he said no, there is a reaction with dairy, but that I didn't need to give it to her in 4 ounces because her dosage was so small the 1/2 ounce was fine. So every morning she has been taking it. She has not had any adverse reactions, and in short I will give you a summary of our observations so far.

So the other thing we started Holly on was Melatonin to help her sleep at night. this is a naturally occurring hormone that it is possible her brain isn't making enough of, so it isn't triggering the message to sleep when it is night time. This is over the counter and she is taking it in small doses, about 1/4 the adult dose. Sleep issues are very common with Fragile X kids, and I am happy tp report it has worked amazingly, during the first week it went from 2 hours to get her to fall asleep to 20-45 minutes. Since then we have implemented a new bed time routine where Joel puts her to sleep and stays asleep with her. he then wakes up early at 6:00 AM to work on projects. I think this has helped relieve stress and pressure on me, but also she knows daddy isn't trying to "leave" as soon as she falls asleep, he makes the room boring, and she doesn't fight it. Joel thinks she was fighting to stay awake to hear me sing and basically manipulating me, while I thought it was soothing her, in a way it was, she wasn't squirmy, but she was also staying awake to listen. So this new system has been amazing.

After we rapped up with Dr. Hagerman we met with Vivien and we completed the Vineland assessment, which is basically our own report of her developmental status, and then it was time to go home. I am going to conclude this post, and start a new one with our observations of Holly after being on Sertraline for 1 month.

UPDATE - Related Links:


Anonymous said...

Again I am struck by what amazing parents you and Joel are. Your dedication to getting expert care for Holly, and also things like insisting that she has a playground break...I just can't tell you enough how much I admire your parenting! I think Holly is a lot smarter than the tests show, it's just difficult for her to express it. But with you and Joel behind her...she'll succeed! Love, Granny

Sarah said...

Sorry I missed this post when you wrote it awhile ago. Of course I can totally relate to much of what you are feeling about Holly's scores. It is really weird, but at least for me, not entirely unwelcome, to have a kid who will see and experience the world in such a dramatically different way. Still so tough though at times.

Anyway, glad to hear the sertraline has had such a good effect.