Sunday, September 06, 2009

Neuro Developmental Clinic visit

I mentioned last week that Avery had an appointment with Dr Kerkering at the pediatric neuro developmental clinic. Well, that was on Monday afternoon, and I've been mulling over it all week and now I think I'm ready to blog about it. That makes it sound's not, it's just been quite a bit to think about. And then I got the official report in the mail yesterday and so have had even more to mull over. (I love that this doctor does that! Makes me think that all specialists should mail copies of the reports to the parents - these appointments are often a lot to take in all at once, so a written report would really help us remember everything that was discussed!)
A couple of things I want to talk about actually. One being the actual evaluation, and the other being the fact that there are things in the report about findings from Avery's most recent MRIs which were never explained to me at the time, and should have been.
Here we go.
This is probably going to be pretty long....
When we accidentally showed up to Avery's appointment 10 days early (oops), Dr Kerkering was still nice enough to come out to the waiting room to talk to me briefly about why we'd been referred to her, etc, and while we were talking she noticed the way Avery was playing and how much she was flapping her arms. She asked about the arm flapping, and then asked about Avery's language and social interaction with children her own age. I told her that Avery flaps all the time, and that while her speech seems to be really excellent, she definitely is more comfortable talking to adults than children most of the time. She set up an appointment for Avery to get a speech evaluation, because apparently flapping can be associated with communication disorders. I took her to the speech evaluation last week. She passed it with flying colours, and had a blast doing it. So then Dr Kerkering was thinking that she wasn't going to be any use to us at all, but then at our appointment, after observing Avery playing for more than an hour while asking me every kind of question about her, she then said that she felt that Avery has some characteristics of Asberger's syndrome. I have a brother with Asberger's, and it has never even crossed my mind that Avery might have it. Of course, I can understand the reasons this has come up, but at the same time, there are so many things about her that are completely uncharacteristic of Asbergers. She gave me a criteria sheet thing, and I've been through it several times trying to be completely detached about it. Here it is, and I have highlighted the things I think describe Avery. Some of the things (especially in the peer relationships section) I had a hard time deciding, because the questions are designed for older children, but here you go. Click on them to see them larger.

Of course, one of the reasons Dr Kerkering said about not diagnosing at this age is that a lot of these things could also just be some early childhood behaviours that she will grow out of. If you are interested enough to read an entire report, then I have posted that too at the bottom of this post, but if not then I will just summarise very quickly what was said concerning the possibility of Asbergers.
  1. Repetative, perserative play. Meaning, Avery can sit and play with one toy for an hour. Right now she has a set of word puzzles that she can sit at the table and play with for 30 minutes to an hour sometimes. While we were at the doctor's office she sat at the table and played with on of those bead-on-a-wire toys the entire time (over an hour), including conversations with or between the beads (such as "Hey! Where are you going?" "I'm going down the slide! See you later! Wheee!") Apparently this is not normal behaviour. Part of my thinking on this is that an excellent attention span isn't really something to worry about! Plus, since it did take her so much longer to be able to crawl and move around, maybe she just got used to entertaining herself in one spot for longer periods of time.
  2. Difficulties with peer interaction. With children, she prefers to observe, especially in group situations. But, as evidenced during Avery's second sleepover this past weekend, she doesn't seem to have a problem interacting with other children on a one-on-one basis. I was paying particular attention to the conversations she had with her friend Kayla over the 30 hour period she was at our house this weekend, and they seemed completely appropriate and adorable to me. Maybe she's just shy in larger groups, or maybe it really is more interesting for her to watch and listen to what everyone else is doing.
  3. Flapping. She does this all the time, not necessarily just when she is excited or upset. Often, when playing with a toy, she will move one part then flap, then move another part and flap again. She does it without thinking, but these days if you draw her attention to it she will say "I'm flying away!" and can certainly stop once she realises she's doing it.
  4. Atypical use of language. ie Repeating lines from movies and using inanimate objects (including things like block or her hands) to carry out pretend conversations. It seems that a lot of 3 yr olds have favourite movies that they like to watch over and over, and I would have thought it would be pretty normal to quote lines from your favourite movies at this age too. Also, isn't it just a sign of a healthy imagination if she can animate inanimate objects? She likes to pretend.
So there you have it. Nothing to do now really except sit back and watch basically. Dr Kerkering also set up an OT evaluation because she thought it would be beneficial for Avery to have OT additional to what she gets at school. Also, we're supposed to take her to see an Endocrinologist, her neurologist or neurosurgeon, and maybe a Medical Geneticist. And we're supposed to be giving her as much opportunity for peer interaction as possible, probably building up to larger groups. Other than that, we will be going back to see Dr Kerkering next year.

Now on to that MRI review which Dr Kerkering referred to in her report. She says that she had the impression that the new MRI findings had not been fully explained to me. And she is correct. Maybe the neaurosurgeon thought we already knew these thing (probably not) or maybe he decided that they were just labels and didn't really change anything so just sort of neglected to mention them. I don't know. Whatever the reason, I do think that we should have been given the official names of the conditions they found in my child's brain. Don't you think?
So here are the diagnoses which should not be new to me but are:
  1. Periventricular Leukomalacia. Basically dead bits of white brain matter around the ventricles. It is also the most common cause of spastic diplegia, which Avery has.
  2. Septo-optic dysplasia. This is: Agenesis or hypoplasia of the corpus collosum (in Avery's case hypogenesis of the posterior corpus callosum), absence of the septum pellucidum, optic nerve hypoplasia, and often abnormalities in the pituitary gland. When Avery was in the hospital up at UVa there was one day that I remember a bunch of Neurology residents coming in and explaining that they were testing the function of Avery's pituitary gland because "sometimes children with her condition also have abnormal growth hormone activity", and that was as close as they came to explaining this condition to us. Of course, I just assumed that by "her condition" they meant hydrocphalus or cp or something.
Here is the full report Dr Kerkering mailed us. I combined all five pages together into one image, so you will obviously need to click on it is you want to read it :) The pink highlighted bits are where I edited it to correct the information about Avery I obviously didn't explain properly at the appointment. Not important, but I felt better after clarifying it :) I don't feel like typing anymore.


overseas grandma said...

As one more exposed to Asbergers than is good for me I submit thus; 1 - Avery might have reached the stage of 'over-analysis.' I doubt any of us could have been poked, prodded and observed as much as this little girl and come away with a 'normal' diagnosis at the end of it.
2 – Had Avery not played quietly for an hour but run from toy to toy & ... Read morethrown herself at walls she would doubtless have ADHD.She’s developed strategies for dealing with the boredom of endless appointments. When I play or talk with her I forget she’s ‘disabled’ - perhaps she likes to sit & be quiet so she can appear/feel ‘normal.’
3 – last for now – Josephine was sound-sensitive, imaginative, quiet, remote and intelligent (still is) – it’s just who she is! Rise up and crush the concept of ‘normal’!

Sue said...

Yay for you Valerie.....couldnt agree more!!

Nancy said...

Time teases out everything. Over- analysis is on the mark. Avery is Avery, a beautifully charming girl ,who is Heavenly Father's Daughter, having talents and gifts to give while sparkling her fantastic smile. Labels are just for trying to help with any difficulties she may have along her way. Labels may change but Avery is is forever. As a teacher ... Read moreof individuals with disabilities, in our zeal to help the child, we must always remember the child first and the diagnosis second.Parents , can be overwhelmed by it , too, and need to be reminded so don't be discouraged...time teases true needs out. Avery is an Angel who needs to come get rowdy with me.

Gloria said...

I taught a boy with Asbergers at Walden. He had just come back from a special school in South Carolina . I really liked him. The only negative thing I noticed was his fixation on one thing like my sunglasses. He always wanted to wear them. Time will tell. She has the perfect, caring mother. You and Gabe are going to be quite knowledgeable medically after all of these experiences. I loved the pictures from the beach. love, granny g

Anonymous said...

Wow I am tired from reading what your Neuro devlopment appt involved, so thorough!

Interesting about her having traits of Asperger's.

Anonymous said...

The only thing worse than a diagnosis/label is

no diagnosis/label.

Excellent post.