UC Davis

So here are a few pictures from our Visit to Dr. Hagerman at the UC Davis Mind InstituteWe had a really great time, even thought it was a very long day. We started out with the ADOS testing for Autism.She tested negative. I wasn't really worried that she was because she is so social, but you never know and she was actually kinda of anti-social with the therapist administering the test I thought since she was a stranger.After that we jumped right into the eye tracking study. It went really quickly and she was pretty motivated. Between each "boring" video they would play a Yo gabba gabba clip from youtube.It kept her interested and we ate snacks and cheese during, on a few they even had the gabba sound in the background which helped a lot and we were done in no time.Originally we were supposed to have a long 3 hour break and then do the Mullins and visit with Dr. Hagerman, and our pediatrician planned on joining us, but they had to move the Mullins up and the doctor wasn't there yet to observe.Luckily I was able to ask them to do the assessment in a room where they could video tape and then they made us a DVD copy and I gave one to our pediatrician. The Mullins was actually the most amazing part of the entire visit. She had so many new skills from 6 months earlier. At the time it was hard to tell exactly how well she was doing though because she was also much older and she still wasn't talking.I'll get back to the results in a minute. After we had a break and headed out to get some lunch. With the hope that Holly would fall asleep in the car for a quick nap, Now I don't recall if she fell asleep or not. I think she did for only like 45 minutes.We then met with Louise the Genetic Counselor and chatted about all the questions I had regarding the PGD for IVF. Our Pediatrician also showed up and met with us. So there was a little bit of time left hear and they told me that Holly needed to get blood work. I was really upset about this because she had not seen by Dr. Hagerman yet and it was going to put her in a really bad mood.We had the yogurt juice ready and she did the blood draw and she cheered up, but she was really grumpy and tired and ready to go by the time we saw Dr. Hagerman at 4:30.So one of the main reasons we were here was to do a follow up on the Sertraline (Zoloft) to see if we thought it had much of an effect. Well the doctor was flabbergasted.Her results had improved so much from 6 months ago that she was amazed. I believe there are 6 levels they test and every one except for expressive speech improved by more then 6 months of development time. The Doctor was so excited she asked our permission to write and publish a case study article about Holly and how the medication has affected her. It helped in ways that were unexpected and made a big difference.Two of them were even above her age range. So for example, at the time she was 24 months and her receptive language tested at 29 months. We were in shock.When we had previously visited she was 18 months old and she tested at about 15 months in Receptive. At that time her expressive was in the 9 month range and at this last visit it was in the 14 month range, so it was also a bigger improvement then we had seen before, even though it was still a significant delay.Her fine motor skills tested at 26 months and previously they were under her age range testing at 15 months when she was 18 months. Her visual processing was also in the 89 percentile which is several months above her age.Its such a contrast to her testing in the 3rd percentile on language. But it was better then our last visit. We discussed whether this was attributed to the medication, or the fact that on the medication she is able to focus and concentrate more, thus allowing for more affective therapy. When we started the Sertraline we hoped for a language explosion, we didn't get one, but we definitely saw very positive results and decided to continue using it for the time being. We also discovered that at the time of her speech regression and stagnation we had stopped her Folic Acid treatments.Prior to our visit we had not correlated these two things, so when we got home we started it up again. Its now 4 months later and I feel like Holly has made another developmental spurt in language, she is saying words that others can understand, she signs more things then I can count and though her articulation is very week, she is talking now.This is also however a struggle we have faced with our regional center. Holly is highly adaptive and she finds work arounds and modifications, but the quality of her skills are week. So functionally she is able to complete many tasks, but she does them with limited rotation, movement, and adapted use of other tools, like her mouth as a third hand instead of using proper grasping and pinchers.Its a good thing that her problem solving skills are so good, but the fact that she gets around doing things the right or "hard" way makes it very easy to mask and hide her delays unless you are really paying attention which her therapists are. We also know that she does have executive functioning issues making it so we have to teach her every single thing that other kids pick up naturally.
That's what makes her therapy so important, she needs to be taught the skills, and then she needs to relearn the ones she taught herself to do the wrong way so that she has the proper foundation to build upon when she is learning the newer more sophisticated skills, yet every 6 months her IFSP rolls around and we fear that with all the cut-backs she will loose her services. Sadly September is just around the corner and we are just now starting to do new assessments and reports. This time we will also be discussing or transition into the school system so it is a whole new barrel of monkeys I have to learn to navigate by next spring so she can keep getting what she needs. Looks like I need to sign up for some of those free classes on IEPs.