Bump in the Road or Piece of the Puzzle?

Over the last couple of years, Nicky's doctors have been keeping a close eye on his rate of growth.  It's slowed down substantially over the last 3 years.  He's turning 9 in June and his size 7 jeans are still too long on him.  I had hoped that once we resolved some of his digestive issues and he started eating more, he'd start to catch up.  Unfortunately, that hasn't been the case.

Last week we spent the morning at the hospital for a growth hormone stimulation test.  They hooked Nick up to an IV and gave him a medicine that stimulates whatever growth hormone he has in him.  Then they drew blood every half hour for 3 hours.  His pediatric endocrinologist called on Friday with the results and confirmed that he is, indeed, deficient in growth hormone.  Once he has an MRI to make sure there's no abnormalities with his pituitary gland, we'll begin daily HGH injections that will continue until about the age of 15.  The endocrinologist tells me he should grow 3-4 inches in the first year and then 2-3 inches every year after.

I've spent a lot of time on the internet trying to see if there's a correlation between autism and growth hormone deficiency.  I haven't found much.  In fact, there seems to be much more written about autistic children with higher than normal levels of GH.  Our nurse at PATH has told me that there is a subset of children on the spectrum that are diagnosed with growth hormone deficiency.  She feels that this whole discovery could turn out to be a blessing -- that the injections could affect other areas of his development too.  In fact there have recently been studies on the use of HGH as an alternative treatment for autism (on children that aren't diagnosed at GH deficient).  Unfortunately, there doesn't seem to be anything conclusive yet.

Regardless of whether or not the injections will provide any benefits beyond making him taller, I'm relieved that PATH doesn't see this latest diagnosis as an obstacle to his course of treatment with them.  We're continuing everything as planned.

Nicky's been on the Diflucan to treat the yeast in his gut for about a week and a half now.  His teachers reported that he had a terrific week at school and that his self-talk (scripting) decreased dramatically.  He's still stimming and scripting quite a bit at home, but Lance and I noticed a big improvement in him today.  Perhaps it's a fluke, perhaps not.  Nicky can be pretty inconsistent, but we're hoping this is a good sign.

This is a video I took today.  He didn't answer everything correctly, but he seemed more engaged in the conversation than last week and he did offer answers to questions that he sometimes has a hard time with (naming his school).

Gotta Start Somewhere

Our Nicky has had a wonderful year since starting his biomedical protocol with PATH Family Center.  As we begin his next phase of treatment, I wanted to start documenting his progress more thoroughly and perhaps share his progress with friends and family.

This course of action really felt like a last resort to us.  Nicky had been regressing for years.  We'd tried many different therapies, many different medications, and several different doctors, and every step forward had been quickly followed by three steps back.  He was also just looking unhealthy to us.  He had digestive problems and poor sleep habits.  We were growing increasingly concerned for his overall health -- not just his neurological issues -- so it seemed time to give the biomedical approach a try.  We were skeptical, but hopeful.  (Hence the blog name.)

We officially joined PATH in June 2013.  The first step was adjusting his diet.  Nicky was already on a gluten-free, dairy-free diet, but through testing we learned that he was also sensitive to eggs, tomatoes, soy, mustard, peanuts, cashews, and some beans.  We eliminated those items from his diet as well as all sugar.  The immediate results were dramatic.  He started eating a lot more.  He smiled more and made better eye contact.  The chronic constipation that he'd been suffering from for years, finally went away.

During this time, Nicky went off of his ADD medications for a few days because the neurologist's office forgot to send the prescription.  We noted that he started receiving better feedback from his behavior therapy camp while OFF the meds.  So we decided to keep him off and see what happened.  He'd been off all of his meds six months prior and the results hadn't good.  He was bouncing off the walls -- literally...running back and forth across the room and banging into the walls.  He couldn't sit still at all.  This time, he was definitely a little more hyper than he had been on the meds, but it was much more manageable and the upside was that he seemed more aware and more social.  He's been off his ADD medications ever since.

The next step was starting supplements based on what blood tests showed he was deficient in.  One piece of the puzzle that PATH emphasizes is facilitating "methylation pathways." Many kids on the Autism Spectrum (including Nicky) have certain gene mutations which mean that there are key factors they're missing to help them detoxify themselves from any environmental elements.  The methylation cycle helps our bodies rid themselves of toxins.  Nicky is missing some of the ingredients (enzymes) needed for steps of that cycle to function.  So he's also taking supplements to make up for those deficits.

The most recent addition to his protocol is Diflucan, an anti-fungal used to treat yeast infections.   Many kids on the spectrum have overgrowth of yeast in their guts.  It often presents as if the child is drunk.  They giggle for no reason, exhibit self-stimulatory behavior and are just generally spacey.  Nicky acts this way much of the time.  We're trying the Diflucan to see if some of these behaviors are, indeed, caused by the yeast.  I'll be posting videos regularly to keep track of his progress.  Here's the first.  We started Diflucan on 2/13.  This video was taken 2/16.  Kids can sometimes experience a yeast die-off period when the symptoms are exacerbated, but that generally shows the anti-fungal is working, and should be followed by an improvement.

He was actually spacier in this video than usual.   He hasn't mistaken his age in quite some time, so I was surprised when he did here.

His sleep pattern has been a bit off lately, so I'm hoping the Diflucan helps with that too.