Monday, April 15, 2013

Autumn ~ Spring 2013

Here are some of the things that have been going on with Autumn lately...

She's in second grade this year and is reading well.  She loves school, and I enjoy seeing her gradually becoming more social each year.  Organization is not her strongsuit.  She often reminds me of Pigpen (from the Peanuts cartoon)  - with a cloud of dust around her everywhere she goes.  But, she's creative, and I enjoy reading the stories and songs she sometimes writes.  She also loves music, and the ipod she got for Christmas might as well be her third arm.

Last August, we had a follow-up with her doctor in Atlanta that has been trying to decide if the problems with Autumn's mitochondria are primary or secondary.  Some new tests were due to come out within a few weeks of our visit.  The testing is finally complete, and we're scheduled to return to June to hear the results and see if they were able to find any new information.

The day after we returned from our trip to Atlanta, Autumn had surgery to have her ear tubes removed.  They were taking a long time to heal, but they were finally closed back up at our last visit, and we were able to avoid another surgery.  Yeah!!!

Much of this school year has been focused on trying to find her an ADHD medication that worked without causing any unbearable side effects.  FIVE medications later - we still haven't found anything.  Here a few of the issues we're having.  First, when she first moved in with us, she had some pretty severe anxiety issues.  So far, any of the stimulants we've tried have brought back her anxiety (along with many other problems) and there was no way we could continue those.  Second, Autumn cannot swallow pills.  Anything we try must come in a small tablet (that I can put inside a raisin) or we can't get it in her.  Third, some of the non-stimulants completely knocked her out.  She was barely awake all the time.  Fourth, one of the medications made her heart rate/blood pressure drop, and we had to discontinue.  Finally, all of the ADHD medications interfere with her eating and weight gain.  At the advice of the GI doctor, we have had to quit trying new meds in order to try to get her weight back up.

Her weight issues are pretty bad right now - bad enough that the GI doctor has mentioned a feeding tube a couple times - to get extra calories in her overnight.  I just can't end up with two kids on a feeding tube!  How crazy is that - when they are not even biologically related?  I knew Silas needed one, but I'm not convinced it's the best thing for Autumn.  For now, we will try to increase the amount of fat and calories in her diet.  We'll see the GI again this summer to see if it's helped.

Without the ADHD medications, she barely hangs onto the growth chart.  With the meds, she falls completely off the chart.  And so, our medication trials are on hold for now.  She's very fidgety and has to be told at least 10-15 times to find her shoes and brush her teeth every morning, but she's managing to make it through second grade.  Overall, it could be worse.

After stopping the meds, we had problems getting rid of the all of the irritability.  I'm in the process of going through anything new we've started this year to find the culprit.  Hopefully, I will have that figured out soon.

Her walking has not been as good lately either.  I'm hoping that whatever is causing her irritability is also affecting her walking.  They have said that her muscle problems could become degenerative, and I'm hoping that's not what's happening.  I've come across several things lately that talk about how some kids allergic-like reactions can result in inflammation in the brain.  Very interesting stuff.

I'll update on Silas next time...


1 comment:

  1. Hi Janel, I was just thinking maybe you could benefit from talking with my friend Caroyln. She has two kids with autism and has learned a lot about natural ways to improve their health and abilities. She's a wellness consultant now and has been very helpful with my health challenges.
    Here's here FB page if you want to check it out. I know you probably get lots of suggestions so this is just for what it's worth, take it or leave it. No worries. =)
    Blessings to you my friend.