Wednesday, February 29, 2012

Neurology Evaluation - PVL

When my son was in the NICU and he got the ultrasound of his brain that most preemies get; We were told that the results were normal. No brain bleeds.

When he was 2 1/2 it was recommended by the Infant Follow-up clinic at Children's Hospital (a clinic that follows preemies and how they develop) that we get a neurology assessment. We saw neurology and they recommended an MRI.  At the time, my son, had been recently decannulated and an MRI that would require sedation just didn't appeal to me and psychologically I personally just wasn't ready for "one more thing" to. 

Well 10 years fast forward, trach free, g-tube free, I am finally ready for the answers to his struggles and delays that are constantly on my mind.

We had our evaluation about a week ago. Thankfully the MRI my son had last April for Endocrinology  was useful to the neurologist so no additional tests were needed.

Immediately the Neurologist said  "well look here, he's got scarring in sensitive parts of the brain that is causing his delays"

In neurological terms: "MRI shows patch T2 signal abnormalities in the left periatrial white matter, probably representing periventricular leukomalacia and gliosis, consistent with his early history. Thus we see that there is indeed a neuroanatomic basis for these issues".

Ok, brain damage? I can literally make myself crazy thinking about when, where, or even how this happened, but I know its basically common sense given his complex medical history. Still it doesn't make it any easier.

On the other hand his delays, motor planning and sensory issues are now all explained. But what does this mean long term? I have learned from past experience that the lungs grow new tissue and the scar tissue becomes non-existent  but what about the brain?

Whats does this mean developmentally? The diagnosis remains the same; neurodevelopmental disorder, secondary to complex medical history, ADHD inattentive type, Sensory processing   disorder.

Where do we go from here?

All I can think to do right now increase his therapies; We have all heard that the brain is always transforming itself, which is why people recover from strokes etc....so now along with PT, OT,  SP he has  in school, he will get private OT and now am looking into a therapeutic riding program. 

Ok, we have a plan...for now.  Followup with Neurologist? Six months.




Wednesday, February 22, 2012

One Month on Growth Hormones...

After lots of research and going back and forth we decided to start growth hormones for my son. Its been a month now that he has been on them.

I have to admit it was rough the first couple of weeks.

It took two of us to pin my son down for the shot and lots of bribes. Stickers, computer time, even trips to the store.

I literally felt like mommy dearest chasing my child around the house with a syringe and then pinning him into a corner so I could jab him.  Awful, just awful.

We went away for a few days at Christmas to visit family. When it was time for the shot my son was screaming "no, no, no!!!" meanwhile a boat load of people sat right outside the door in the living room. ugh...

The funny thing is the shot itself doesn't bother him! The needle is teeny tiny. It was more the anxiety building up to the shot. Once it's done he said to me (each time) "that's it?" ...Then I had to go have a tall glass of wine. 

All this drama lasted about two weeks.

Then one day I had a thought...give the shot after his bath? After all he's already naked and I won't be fighting to lift his shirt or pants.  It worked, he flinched at first, but it was over in 20 seconds verses 40 minutes.

Since that night, there isn't a problem, he lifts his shirt willingly and then goes and plays. However, I still need my glass of wine...or two.

As for results? I'm told it would take a while to see results from the hormones (around 6 months). Thankfully, none of the serious side effects have reared their ugly head. What I have noticed is increased hunger and he has put on 2.5lbs. That's alot in a month. I'm hoping an increase height will follow soon.

Update: 2/13/17...We had 3 endocrinology doctor changes since this post.  We came off growth hormones over a year ago.  At 4"10 he was we were told he was at the end of his growth.  He went through puberty very quick.  His bone age which was one behind was advance two years.  We are told he probably won't grow much bigger then he is now.  I'm hoping thats not true.  Docs have been wrong before.  Time will tell..see updated post here...


Saturday, February 4, 2012

Using Social Stories...

Social Stories can be used in many situations.

I like to use thems whenever my son has to transition into something new.

The first time we used a social story was when, my son was going through the process of removing his g-tube.

Our gastroenterologist, had been concerned that my son would become upset when his g-tube was removed, after all it had been a part of him since he was three months old. So just removing the g-tube without preparation wasn't an option for us. This was not something that had ever occurred to me but it did make alot of sense!

GI referred us to psychologist who specialized in feeding disorders and she was the one that recommended that we create social story about the process of removing the g-tube.

 So...I created the story and included all information I could about Collin's journey.


Our doctor liked my son's story so much that I  he is now using it to share with other parents who are facing similar challenges.


There is a great books with social story ideas you can purchase.

A place you can search for more idas is on  Board Maker Share.  I have used some of the examples on this site for situations like why we do not touch to dealing with emotions and anxieties.   Browse through the posts even submit your own social story if you have one to help others.

I also came across this You-Tube  social skills for behavior , that I just love...so did my son. There are lots of different types of social stories on You-Tube as well.

Take advantage of social stories. They really do help!