Feeding Therapy

We’ve been going since August. Twice a month because it’s expensive and far away but it’s better than nothing!!

I made myself stick with it even though we feel like we’ve seen little progress. I knew this would be a slow process. Truly we’ve spent months working on Easton biting chewy tubes, desensitizing his mouth, and getting rid of his oral defensiveness that keeps him from eating anything that’s not soft and on a spoon. He still lacks the skills necessary to move food around in his mouth.The past few sessions we’ve been successful in playing with food and even sticking in his mouth but he immediately spits it out. 

Today was supposed to be a session but since we have 14 inches of snow and counting we tried a little at home. Now typically Easton loves cereal bars but they have to be mashed up in milk and eaten with a spoon. Today mom and dad got stubborn and meant business.

Then this happened…   

   
Hooray!!!! Little man a wonderful world of food awaits you!

An Unpaved Path

I think one of the biggest downfalls of social media is our ability to highlight all of the amazing, spectacular areas of our lives and yet we never show the struggles and the really hard days.  I’ve went back and forth several times about actually writing about this, but it’s part of our journey and I think it would only be fair to be open from the beginning.

Easton has blessed our family beyond comprehension. There have been struggles, but nothing we haven’t overcome. Easton attached fairly easily, he’s enjoyable to be around, he gets therapies provided through our states waiver program, he loves being on the farm, he goes to school…nothing about having Easton in our life seems difficult. Adoption isn’t always that way..we are fortunate.

There have been parts however that have been difficult. Easton spent 6 years and 8 months in an orphanage that did him no favors. He came home like an infant that could walk..barely.  He couldn’t chew, talk, wasn’t potty trained, and delayed significantly in all areas. On top of this Easton is a self stimming fool, after laying in a bed for 6 years playing with your hands, you would be too!  He only displayed harmful behaviors a few times (i.e. pulling his hair or scratching) when he got really mad after being told no.  We were able to quickly dissolve those behaviors.  So we don’t see things like head banging, or thrashing into objects. What we do see is some rocking, that has greatly diminished, and some over the top hand flapping/stimming. These behaviors increase when he’s overwhelmed, excited, or anxious. Every physician we have seen basically says we should expect to see this, at least in some form, forever, because by now they are a part of who Easton is.

When school started this year we began seeing a whole new set of behaviors. Running out of the classroom, sitting in the hall refusing to walk, scratching teachers and students, pushing, screaming (ok we’d seen the screaming a lot too), the list goes on.Easton wasn’t doing things for attention or because he was upset…they were all sensory seeking behaviors. The behaviors were not getting better with natural consequences like taking the bus away (kid is obsessed with bus) so we began seeking professional help. And before you even think it…we discipline our son so it’s not that he is just a spoiled brat that needs to learn a lesson or two….trust me!

While our pediatrician admitted she didn’t feel like Easton should be diagnosed with an adhd diagnosis, especially since he had so many developmental delays, she truly felt it was the only way to treat his extreme hyperactivity and impulsivity which ultimately led to all of the above mentioned behaviors. I agreed. After reaching out to our support system of other adoptive mommas who’d traveled this path before us, it had been the answer for many kids. We truly just wanted to give Easton’s body the ability to regulate itself so he could calm down and make it through the day without looking like he could jump out of his own skin.  So this is the path we chose.

We started with a stimulant and after 3 days knew it wasn’t the answer. Easton had horrible tics, he was highly emotional, and behaviors were increased. We stopped. Next (because this process is trial and error) we tried a drug called Intuniv.  To be honest we thought this was our miracle.  It wasn’t a stimulant so we didn’t worry to much about crazy side effects and it truly made E a different kid. He could sit in the classroom and focus in school. He wasn’t being defiant anymore, when you said no or stop he listened.  I felt like he was beginning to learn!  Then came the 6 week mark and after returning to school from Thanksgiving break, a switch flipped and this miracle drug no longer worked. In fact it began having the opposite effect on Easton and he became almost unbearable yet again. Our Pediatrician (who by the way I think is absolutely fabulous!!) consulted a developmental/behavioral pediatrician who had expertise in this area and he said he’d seen this happen in many kids. We should move on to another drug and see if it works.  So with a little hesitancy we did.  This time another stimulant.  We began the drug and took it while taking the Intuniv but we didn’t see much improvement so we began tapering the Intuniv so that the stimulant could work on its own.  Coming off of Intuniv was a nightmare and Easton wasn’t even comfortable in his own skin. He couldn’t find comfort anywhere and was bouncing off of every wall, climbing on tables, and couldn’t put his hands down.  Once those withdrawal symptoms wore off we noticed there was no increase in Easton’s behaviors on the stimulant alone and he was losing weight and becoming anxious about everything…it just wasn’t our happy little guy. I wasn’t willing to give up who my son was for the sake of minor improvements…so we stopped everything.

That was a few weeks ago.  School has been difficult because Easton is extremely hyper and hard to calm down. At home it’s a little better but the environment isn’t as stimulating, so he’s easier to control.

In that moment I knew there had to be a better answer for Easton and I started digging and digging. In fact I even made myself sick looking for an alternative answer for Easton that didn’t include big pharma.  And then I happened across http://www.biomedheals.com .  This momma who refused to take an autism diagnosis for her son and let that be his future, had taken matters into her hands and sought out alternative medicine for her son. She found it in biomed.  I began looking into the same thing.  Knowing what I already know about Easton’s genetic make-up, and the environment he was predisposed to before coming into our family, tells me that it is Highly likely our son suffers from multiple insufficiencies  and maybe has some other systems not working the way they should.  After alot of careful consideration and searching the country for a biomed Dr that could see us via skype, we’ve reached a decision.

This is the path we are going to take for Easton.  Insurance doesn’t cover most of it, and it’s a long road without easy, quick, solutions but within my gut, I feel that it’s what our little guy needs to heal.  I want him to live the best most independent life he can and until we begin to fix the problems going on inside of his little body, the outside isn’t going to function properly either.

I’m fully aware there are parents who have spent thousands going down this road with no result.  But if I didn’t risk it, I would regret it and Easton is worth more to me than that. We’ve already ordered a couple of genetics tests that are on their way to us from 23&me and Courtagen. These will help us more closely analyze just how Easton works and what could be the cause for his delays/behaviors.  We won’t do it alone, we will be under the guidance of Dr. Catanzaro and his team at HealthCoach7 and we couldn’t be more excited.  Most of these tests take a few weeks to get results back so until then we are hanging on and managing Easton the best we know how.  He’s not completely uncontrollable, just way hyper and bouncing off the walls constantly…he keeps me on my toes! We can manage just fine until we can begin with new protocol for him. Our pediatrician is fully aware, on board, and wants to help any way she can (again she’s fabulous).  We all just want what’s best for Easton and this new road is what we’ve decided might hold the answer.

I’m not looking for judgement, especially from those who think we’re crazy (I’ve questioned it myself).  What I want is to share this journey with others who find themselves laying awake at night wondering what they can do to help their child reach their potential.

We still don’t have travel dates for our 2nd adoption and at this point we think it will be pushed back to around April if the process goes as expected.  I’m thankful, hopefully this will give us enough time to get some treatment options started for Easton before we turn his world upside down by bringing a sister home! This will be a long journey but I can’t be more sure and excited to get started. We appreciate your prayers as we tread these uncharted waters!