Dr. Glass, pediatric neurologist - Part 1

Okay, I'm starting to get paranoid that I'm going to forget stuff and then I'll get the paperwork and he won't have mentioned things I cared about. I just like to worry. I'll fill in the holes later.

We talked about Carver's basic history, timeline.

We talked about how we handle temper tantrums - how often, what they are about, etc... He recommended using parental "mechanical arms" to restrain Carver during a tantrum and using the words "I know you are upset. When you are ready, we'll play/go back/finish up." No arm rubbing, no pacifier, no calming words or rocking. The point is that he learns to calm HIMSELF and I really like that. I've already started using it and I feel so much more in control because it's NOT in my control anymore, if that makes sense. I don't have to figure out how to talk him out of the tantrum because that's not my job. Good feeling. He said that essentially, we don't want to rescue him from his frustration/tantrum and send a message that he can't do it by himself, that he needs us to do it.

(I've been trying to give him LOTS of opportunities to do things himself because it builds self confidence and besides, it keeps him happy. Nothing as fun as moving garbage cans on garbage day!)

Also, tantrums may start out about something in particular and then turn into "mad because I'm mad" and certainly they feel remorse for anything they did when they lost control. And it's a definite loss of control. He recently hit a friend when he was upset about the friend needing to go home and I knew he felt bad afterwards, but he didn't really mean to. I guess he did because he aimed and everything, but it was such an impulsive action that it wasn't intended. It must be terribly frustrating to not know how to handle negative emotions.

I loved what Dr. Glass said about temper tantrums. Carver learns throught them. It might be appealing to avoid them, to give in to what he wants. But it doesn't teach him anything. It's in learning to manage that anger and disappointment that he makes progress. Great perspective.

On a related not, he said that kids learn more from watching how other kids are disciplined and treated than how they themselves are disciplined. So as we respond to Grace can teach Carver powerful lessons. And vice versa. Which should help with some of her imitations of his less appropriate behaviors. Interesting to consider. AND praise is nice, but what you hear people say about you to another matters the most. I think that's true of adults, too, and the reason gossip is so destructive.

We talked about quiet times. I confessed that I lock him in his room every day for quiet time, he cries and usually falls asleep on his bed. He was a HUGE fan of this (whew!) and said that kids need more downtime, especially after a long day at school. He said 30 minutes of screen time can really work, as well, so long as it really ends at 30 minutes. The fact that Carver is often climbing in his bed and going to sleep is also a good sign because he's listening to his body and solving his own problem. Usually I hear him play for a minute or two and yesterday he only played, but honestly - it's 4:30 by the time we're back from the bus stop and finished with our quick snack. He's exhausted. And it gives me a chance to decompress school with the girls - do homework, review backpacks, hear their important news.

We talked about his anxiety the night before and he said it was absolutely related. So is Carver's recent sleep walking. He said night terrors are common, too.

Basically, Sensory Processing Disorder is broken down into 3 parts.

1 - AROUSAL:

A normal state of arousal varies between a lower level (think of someone easily distracted at a cocktail party, talks to lots of people, doesn't concentrate on one thing at a time, doesn't maintain good eye contact) and a high level (think of someone that walks into that same cocktail party and immediately observes what everyone is wearing, how the furniture is arranged, where the food is, where the exit is, who is talking to whom and probably doesn't even want to be there. Also more likely to have good eye contact in conversation). Derek and I are on that end! :)

Beyond that lower end of normal you have ADHD. They have such low levels of arousal that they have a hard time functioning because they are so neurologically drowsy. Stimulants bring them up into the normal range. I'm guessing that it's distracting to be so under aroused, maybe the world seems abrupt and hard to figure out?

Above the high end of normal, you get SPD and beyond that is the Autism Spectrum. So SPD, whether over-sensitive or under-sensitive is a higher state of neurological arousal. It's complicated because there are all these overlapping issues, right? Definitely! Carver's always so tuned into what's going on around him - the sounds and sights - that he just wants to touch it all, be a part of it all. (Other kids might be trying to avoid all those things.) We try to calm him with sensory therapy to offset that over-arousal. It's hard to focus on filling out all those school emergency forms if your kids are pulling at you, the oven is beeping and it's a really hot day. That's the feeling of over-arousal.

2 - SENSORY ISSUES

Carver is over sensitive to sounds. He is scared of thunder, garbage trucks, sudden applause, yelling children, etc... He is under sensative to touch and oral sensations. He craves things in his mouth (gum, yum-yum, toys, crocs! and strings - food, too!) He also seeks physical touch, swinging, crashing into stuff, my arms, hair, etc...

3 - ANXIETY

It's not hard to imagine that a world like Carver's is overwhelming. That's why routine is so important, why it helps keep things in order. Disruptions to his routine are often causes of tantrums. Dad had to go help with a move instead of finish our family bike ride. A sudden change of plans is very difficult. Or giving stuff to people, things he's gotten to associate as part of his life. For example - the zucchini. Dr. Glass said that while he may not like zucchini, he's realizing where it fits in his life. It grows in the backyard, we cut it off, put it on the counter. When I give it to a neighbor, it's distrupted from our regular routine. I'm thinking that if the regular routine was to wrap it up and take it to someone, that would be no problem. Unforunately, life is full of unexpected events. I can't really avoid all of them.

I think he said that we treat the sensory needs to help regulate his over-arousal. Swinging and crashing, tickling and spinning in a chair gives good steady sensory input to minimize the "cravings" and give him a feeling of order and balance to accomplish other tasks.

We also talked about his dyspraxia or apraxia. He rated him about a 7 1/2 on a scale from 0-10, 0 being no dyspraxia and 10 being most severe. Carver really didn't talk much for him, so I might bring that down a notch. Still, it was a good reminder that his delays are significant. He recommended speech therapy in addition to what he gets at school. The wait list is probably til around January at Children's Therapy Center but we're on it just the same. I might see if I can find another place to go, although if we stick with CTC, it makes my appointments with Dr. Glass more legitimate (we got to see him because our previous therapist pulled some strings).

He talked about language (grammar, usage, etc...) as a wall and how delays are like bricks missing from the wall. You can add them in later, but those holes affect ability to communicate effectively. He said that often with dyspraxia there are language holes. It is hard to know which came first, but there are clearly gaps in what Carver understands and communicates. We're filling them in, though, little by little.

He thought that we'd be better off tackling rumination later when Carver has more language skills.

I asked about potty training, if I can wait for the same signs of readiness of typically developing kids and he said yes. He will get there and in the meantime, make it a non issue. That's hard, but I've been trying already. I'm sure our pressure on him relates to his withholding issues right now. It'll be awhile. He recommended TRIPLE underwear when we're ready or undies under the pull-up. Maybe NEXT summer? :)

His wife does behavior counseling and he is going to give us her contact information. I guess she is one of the few in the area to meet with families and help them tackle behavioral issues. I mentioned that I was on the OT list because I wanted more help with those sorts of things. Really, he doesn't think that OT is as important as developing language skills. And OT wouldn't solve all those issues. I'm curious to see what his wife does.

He warned that reading might be hard, but that's hard to predict. He thought that writing would definitely be a challenge. I'm so mature I'll worry about that later.... Okay, okay - I am so full of present day worries, I don't have room for those!!

He listed a bunch of qualities that these kids have, here's the few I can remember:

charming
kind
empathetic
inflexible

He was right on the money. Carver is really delightful. And exactly like that poem about the girl with the curl in the middle of her forehead -

when she was good, she was very very good and when she was bad, she was horrid.

He played with Carver, talked about flashcards:

"what's this?"
tree
"what falls out of a tree?"
people
"people fall out of a tree?"
yes
"what goes on the ground under the tree?"
people

okay.... moving on....

"what's this?"
sun
"is the sun hot or cold"
cold
"the sun is COLD?"
giggles, yeah
"Carver, is the sun hot or cold?"
cold

Hmmm... I think these illustrates the kind of language gaps that we're dealing with. Sometimes I wonder if Carver thought it was a game to tease Dr. Glass, but really he answers crazy like that to all sorts of things.

He had him push the button on a small measuring tape with his pointer - Carver LOVED that game because Dr. Glass made a funny sound and zipped it back up. I also think Carver laughed and laughed in part because he was SOOO tired and because it was a release from the anxiety of being in this small room with only a few toys and 3 adults talking about him. It was adorable.

He checked reflexes, looked in his eyes and mouth. Carver loved that little hammer. He had him chase the measuring tape down the hall and as soon as he brushed next to him, he dashed off to another classroom. A constant challenge for me, too.

He said that SPD kids really respond to reaction. Facial expressions, tone of voice, body language. They are super receptive. Keeping a blank face can really help "win" battles. I think Carver feels like he wins when he gets any reaction at all -positive or negative. Unfortunately, he wins all the time around here!

I wish I'd asked about flax seed oil. Anyone know what he thinks of that sort of thing?

Okay, that is a lot of stuff. And really, I'm SURE I left out more. 90 minutes is a long conversation. But I'm worn out....I bet you are, too! More later when I have those doctor notes.

Gastroenterology

That's a mouthful, huh? And why is it called GI for short? Where's the I?! I'm assuming it's for intestinal? Anyway...

The doctor was great. Carver actually spit up a little in the office and I was able to show him before I wiped him clean. Just the classic white curdles. I felt like the doctor took us seriously, considered the implications of SPD and make an accurate diagnosis.

It's not what I wanted to hear.

It's called "rumination" and it's a VOLUNTARY regurgitation, a habit or nervous twitch in the stomach that forces food back up. I've googled it and it fits Carver perfectly. It's more common in infants and children with developmental delays/disorders, it's (sadly) often linked with a lack of attachment or the absence of a mother. But we're not going to dwell on that part because it's not our situation, right?

Carver's tendency to eat quickly and not chew well lets the food sit in his stomach longer, making it easy to regurgitate. We'll work on those as best we can.

Another recommendation was to use bio feedback, which is more a psychology technique that builds association with the habit until you can use that association to control and eliminate the habit. For example, singing the ABC song is something other families have done with each regurgitation. I'd be singing it continuously sometimes. He suggested a toy that makes noise, essentially a distraction that will take attention from the behavior and eventually replace it. I get the concept, I'm just not sure how we're going to do that exactly. He recommended a child psychologist for more help. Sometimes anxiety/anti depressants help, but he doesn't recommend that. Thank goodness!

Speaking of medication, he'll stay on his Zantac indefinitely. It doesn't help the rumination, but it will control the acid and prevent damage to his esophagus, teeth, etc... Carver doesn't mind taking it, it doesn't have negative side effects. The dose was right, so we'll be refilling that somewhere cheaper than Bartell's and trying harder not to forget.

The doctor also said that there was a 5% chance there was something else involved and said we could elect to do an endoscopy (en-DAH-scuh-pee). I still have to repeat it in my head a couple times to say it right. Anyway, it's the procedure where they send a camera inside, take pictures, biopsies and rule out any other medical, physical problem. Allergies, hernias, ulcers, etc... It's done with general anesthesia at the Children's Hospital in Seattle. We've been there with ear tubes and it's a very similar experience. It'll be half a day at the hospital for a 10 minute procedure. He couldn't recommend it necessarily and left it totally up to us. His nurse told me after he left that he's very straight forward and would've said one way or the other if it mattered to him. I liked knowing that, but I still wished he'd just decide. Then I thought about my last post and how much I believe in mothers knowing what's best for their children. And I suppose I'm grateful to be involved and respected in Carver's healthcare.

I worried and thought and second guessed all the way home. And I prayed - a LOT. I've been fasting and praying to know what to do, to get answers and to be able to help Carver. I worry a little about the anesthesia because I can't help it. But in the end, I really feel like it is a good idea to go ahead and do the endoscopy. We might not find anything, but that alone would give me the energy and focus to move forward on the rumination with no question in my mind that there might be more to it. I'm pretty sure I don't WANT to find anything else. That would just make everything more complicated.

The endoscopy is Monday morning, bright and early. I haven't gotten all the instructions yet, but I know for sure that he's not eating anything after 7 pm the night before. And I think he's on a smoothie diet the 12 hours before that. It's a good thing he likes that sort of thing, but I still anticipate a rather grumpy day.

I think we'll know some results right away, but the biopsy results will take longer and will be discussed in another office visit. I feel tired thinking of another long-term condition to overcome, but I am so grateful to KNOW. It's where everything has to start. Now I just need to focus on HOPE in the future and the courage to keep heading that direction.