The Grown Ups Meltdown on Day 4

Day 4:

I can not believe Heather waited this long, but today was Magic Kingdom day.  I woke up this morning feeling much worse.  Then, I realized we came equipped with a pretty strong antibiotic that we are giving Ethan. I took one this morning, and I am feeling better. Far from healthy, but better nonetheless.  The day started with a little hardship. I did not handle the start of the day well.  We walk inside the Magic Kingdom and head down Main Street. (first time you can see the castle) Most families get to experience joy and excitement during this moment. We were once again greeted with wet pants and a constant hungry, hungry, hungry, hungry, hungry, hungry, hungry…..   It was a hard moment for me. Perhaps, it was the sickness that caused me to lose it, or maybe it was the cumulative 3-day cycle of constant wet pants and hunger obsession, but I had a minor meltdown.  I just wanted this “normal” happy moment.  After my breakdown, we actually ended up having a pretty good day. Heather and I planned this day perfectly. We hit the entire park before 3. Our lunch plan worked to perfection. One of the major stressors of the trip centers on meal times. They have to prepare Ethan’s meals specially, so that means it takes a lot longer. (Ethan is not good at waiting particularly with food) Today, we ate lunch early (10:30), and Heather went to talk to the allergy chef while I took the boys on the teacups. Timing was perfect.  It really helped minimize the pain of ordering meals.  Shortly after lunch, Heather had her breakdown. I think her breakdown was triggered by mine earlier in the day.  Mom and Gavin went to Small World to regroup. While they were gone, I figured out a strategy to deal with the wet pants and the hunger obsession. The tough part about the constant wet pants was the hopelessness. We couldn’t figure out what to do to help stop it.  It’s not going to stop the behavior.  At least we have a plan, and maybe it will mitigate it some. We rallied after that and had a pretty good rest of the day.  We took the boys on Splash Mountain. Ethan loved it. Gavin hated it. He started crying before we even started down the big hill.  Like all good parents, we bribed Gavin with a new toy to go on it again!  Turns out though, it was a good parenting move. Gavin actually really liked it the second time around. We then went to Gavin’s first real roller coaster, Big Thunder Mountain.  This time, Ethan hated it and Gavin loved it.  We all shared some pineapple treats before leaving the park before 5. It was very nice to leave the park before we all got tired and cranky again. We just had a quite night tonight.  Heather and I are off to prep for our 2^nd day at Hollywood Studios.  Then, off to bed. (once we fold the laundry of course)

Animal Kingdom

Day 3:

We spent the day at Animal Kingdom. Heather and I took the time to plan last night, so we knew when and what we were doing with little vamping in between. It really helped us throughout the course of the day make sure we did everything everyone wanted to do, and know exactly which restaurants could accommodate Ethan’s special dietary needs.  Looking passed the obsessive hungry, hungry, hungry, hungry, hungry…… or the got to go potty, got to go potty, got to go potty….. the constant wet pants(doing laundry again tonight), and the fact that I woke up sick this morning,  I’d say it was an overall good day. Not great, but good.  We had some good times and pretty much knocked out the entire park by 5:00.  Both boys LOVED the safari. Gavin played little tour guide as we went along the “savannah”.  We were able to hit all the main characters today who were decked out in their Christmas gear.  Some were better than others, and we did have to take a potty break in between each of them.  Gavin and I got soaked on Kali River Rapids. I laughed while Gavin turned into the hulk.  “I do NOT wanna ride this again”! He said with a snarl. As payback on the boys, we took them on Dinosaur and they were both super scared.  Ethan and I even went on Expedition Everest where we sat in the very first row. It was awesome! I couldn’t tell if Ethan liked it. He had his head buried into my chest most of the time, but seemed to be happy when we got off, so I’m thinking he liked it. Although, maybe he was just happy to be off and safe on the ground.  We endured some mean people while waiting in line for the parade. We waited for 30 minutes when a Mom tried to plop he kids down in the 1 square foot area between the line and our stroller where the boys were sitting.  We were not about to let that happen. As they walked away, I heard the mom say, “lets just get outta here. This guy has no concept of decency. “ Of course, being a sensitive guy, I let that get to me, but was able to brush it off after Ethan and I hit Everest.  We got back to the hotel by 6:00 and the boys fell asleep by 9:00. Heather and I are about to prep for the Magic Kingdom tomorrow.  Here’s hoping that I wake up and magically no longer have a cold and stuffed sinuses!!

On the Bright Side, We're in Disney!!

Well, we are in Disney World right now. Started our day out yesterday quite well. I should have known that was a bad omen. We got to the airport with plenty of time to spare, and we were lightning quick going through security. Heather and I are so good, we even passed up several solo travelers.  Then, everything started to go downhill from there.  Once on the plane, we were delayed on the tarmac for 30 minutes. Which means, we were on the plane for an hour (preboarded 30 minutes early) before we moved. Ethan had already gone through 3 pairs of wet pants.  On the bright side, we got to Austin in time for our connecting flight.  Flight to Orlando was okay, if you discount the 5 more wet pants and the minor meltdown Ethan had in which he kicked the guy’s seat in front of him. Who pissily turned around and gave Ethan a mean look. Typically, I take the boys and Heather sits in front of Ethan for this reason. This time though, Gavin was so excited about flying, he really wanted the window seat, and so we let him.  Longer story made shorter here, once we hit Orlando, we had another wait for the Disney World bus and then a 45 minute drive. Shortly after arriving at the hotel, Ethan went through his entire collection of pants. On the bright side, we were smart enough to pack all 20 of his pants in the carry-on, so we had them with us.(our bags had not yet arrived) At this time, it’s about 5:00pm. I am super exhausted from all the travel and I had to do a LOT of good solid “parenting” on the plane.  All I want to do is lay down, and grab a power nap. Unfortunately, the TV was broken, so there was nothing to distract the boys.  Gavin was jumping from bed to bed and Ethan was getting into everything.  It was about 7 before we finally just asked to switch rooms after waiting 2 hours for someone to come and fix the TV. (she couldn’t)  After that, we all collapsed in bed before 8:00. 

Day 2:

This morning was a bit rough as well.  Heather had to wake up at 530 to go do the laundry because Ethan was out of pants.  Ethan had a nice meltdown in the middle of the food court about breakfast. On the bright side, Ethan and I had such a GREAT moment before his meltdown.  As we walked in, Ethan noticed a young man playing guitar and ran over to him. This guy was about 16 years old. Ethan ran and excitedly jumped and made his happy noises right in the guy’s face.  This guy was so great. He smiled and talked with Ethan, and he kept playing for Ethan.  The guy tried to teach him how to strum the guitar. Then, Ethan took this guy’s hand and had him start playing the guitar. Ethan held his hand while the guy continued to play. And the kid was smiling at Ethan the whole time! It was so awesome. I almost cried.  It just goes to show that the kindness of a random stranger can really have an impact on our lives.   

The rest of today was up & down.  We went to Hollywood Studios.  Same story with the wet pants, Ethan pretty much left every attraction with wet pants.  We’re doing laundry again tonight.  Ethan had major meltdowns during meal times. (the chefs make his food special so it takes really LONG)  On the bright side, we took both boys on Tower of Terror and it lived up to its’ name. They were terrified.  I ruled (as always) at Toy Story Mania (3 times). We took our pics with Wreck it Ralph and Mr Incredible, and we enjoyed a couple shows and a parade.  Gavin became a Jedi and fought Darth Vader. (I literally cried my eyes out when he was on stage!)  We capped off our day with Fantasmic (water, lights, character, fireworks show).  We were picked to do Disney Trivia as part of the preshow entertainment.  We had to stand in front of about 1-2,000 people and answer 3 questions.  I knew Walt Disney’s middle name, and Gavin chipped in with what Cinderella’s slippers were made out of. Ethan stood in front of us and did pretty well.  We won 5 boxes of free popcorn, which we promptly gave away to people around us. The show started and both boys LOVED it.  Ethan bounced up and down on my lap the whole time and Gavin was just so into it. Overall though, today was a pretty good day.  We laughed. We Cried. We yelled at each other. I guess what all families do on vacation. (just a bit amplified for us)

Looking forward to Animal Kingdom tomorrow and an even better day!!! 

Biomedical Update Summer 2012

A couple months ago, it was time to get Ethan retested to gauge how he is progressing with his biomedical treatment plan.  This latest round of tests was the most intensive that we have undergone because we completed 4 different tests at the same time. Two of which required Ethan to fast before hand. If you know Ethan, you know that keeping him from eating for the first 3-4 hours of the day is no easy feat. 

Ethan had been exhibiting self-injurious behavior (SIB) for several months.  At Gavin’s 4-year check-up, the pediatrician recommended we have Ethan’s cholesterol checked. He explained that kids who have been treated multiple times with antifungals for yeast, like Ethan, have had their cholesterol levels drop.  Low cholesterol can lead to aggression and SIB in kids with autism.   I ignored the doctor’s suggestion thinking that did not make sense. Over the next few months, I noticed Ethan’s aggression get worse and worse specifically the SIB.  In my gut, I knew that the yeast was back.  I did not want to put Ethan on another round of antifungals, so I pushed those feelings down deep and ignored them as well.  I paid a visit to Ethan’s biomedical doctor who also suggested the cholesterol exam. I decided to do my own research on cholesterol and it turns out, cholesterol is pretty dog gone important.  It is needed for vitamin D synthesis, hormone production, normal cell function, aids digestion, and most importantly, it is needed for normal brain function.  After learning more, I decided it was a good idea to go ahead and get him tested. It was a simple blood test. (you know the one where Dad sits on top of him, pinning him to the exam table, while 3 nurses draw his blood, simple right) Turns out, his cholesterol is indeed low.  We have started him on a cholesterol supplement. After about 3-6 months, we should begin to see big changes in his behavior as a result of his stable cholesterol level.

The next test we did was a comprehensive digestive stool analysis (CDSA).  This test showed us that not only was the doc right about his cholesterol, but Dad was right about the evil yeast clawing its way back into Ethan’s gut.  If you’ve read previous blogs, you know that we have combatted yeast for a couple of years now. We can’t seem to keep it away. Usually, it comes back after Ethan sneaks a food that is not good for him, mostly bread. This time, I’m not sure what allowed it to come back. I think he did get into the bread, but I thought we caught him in time, maybe not.  I know his levels of good bacteria had decreased dramatically.  A healthy amount of probiotics in his gut will combat the invading fungus pretty well.  Unfortunately, Ethan has yet to establish a healthy enough amount of good bacteria.  Ethan had 3 days of IV antibiotics in his first week of life. The problem with antibiotics is they kill good bacteria too. The IV antibiotics pretty much destroyed the probiotics he was born with.  We’ve been striving to get his good bacteria levels up ever since we began biomedical treatment 3 years ago. Yeast will cause all sorts of awful behavior problems from aggression, food obsessions, fogginess, attention problems, and unstoppable hysterical laughter that could go on for hours. Yeast will wreak havoc on the rest of the body. Taking over in the gut, it will begin to destroy the good bacteria that are a crucial part of the immune system. It will cause digestion problems, absorption problems, and a throw off various biological cycles.

The CDSA showed us that despite the yeast, Ethan is beginning to digest his food better. However, he does have trouble breaking down fat and carbs.  While he is digesting better, he still has a poor absorption rate. This can be somewhat attributed to the yeast, but it is also another ongoing problem we are battling.  The final item learned from the CDSA is that a strand of good bacteria was not present in Ethan’s system.  The yeast had eradicated the lactobacillus strand of probiotics.  Ethan has begun a new round of antifungals to get rid of the yeast.  He will continue taking digestive enzymes with meals that will help him break the food down and absorb the nutrients better. We are adding a supplement called acetyl carnitine to help break down fat and carbs.  We started treatment as a result of both tests about a month ago. We have already seen a dramatic improvement in Ethan's temperament as well as an improvement in his language. Those are the first two tests we had ran this time around. This is enough info for now, so I will get into the next two in a separate posting. 

Summer is almost over- finally!

3 months ago, Heather and I were talking about how nice and relaxing this summer was going to be.  She was eager to spend some 1 on 1 time with Gavin while I was looking forward to having plenty of extra time to study.  Heather and I knew that come August we would most likely be moving to a different house, but before then, it was going to be a nice stress-free summer.  Little did we know, the universe was chuckling to himself saying, “I don’t think so!” At the end of May, I decided to apply for an internship with the Environmental Protection Agency. I didn’t really think that I would get it, but I applied just to see if I would get a call back.  2 weeks later, I get a call from Ada, Oklahoma.  It is the EPA’s water research lab, and they want me to start July 2.  Caught completely off guard, Heather and I decided that this was too good of an opportunity to pass up, so I made plans to move to Ada, OK for 7 weeks.  I will be putting in 40 hours a week and then coming home to spend a few hours a night on my classes, so much for having plenty of time to study. 

Meanwhile, Heather was having a rematch with the devil himself, more commonly known as Blue Cross Blue Shield for several weeks.  The week before I was to head to OK, it was clear that BCBS was going to win this round.  They were no longer going to pay for Ethan’s ABA service at Behavior Exchange.  Behavior Exchange is our thrid ABA center, and they are the only ones we have liked. Losing them was pretty devastating to the family.  On Ethan’s last day, there were many tears shed. Not just by us, but by some of Ethan’s teachers as well including our beloved Ms. Amanda who hugged and kissed Ethan lots of times. Not only did they touch Ethan’s life, it was clear that Ethan had also touched theirs.  Heather and I were very distraught over the loss of such a promising center for Ethan. We racked our brains and tried to figure a way to get back. After several days, we had given up. We were defeated.  Heather made an appointment with the only in-network ABA center.  It was about an hour away from our house, so this meant we would have to move to be closer.  While we were planning on moving, we definitely were not planning on moving to this area, nor did we want to.  We toured the facility. We were not very happy with it, but what choice did we have? We started proceedings to enroll Ethan into this new center.

This was about the time I had to ship off to Ada, OK.  I was excited about the opportunity, but also worried about the family.  Without ABA, Heather had both boys all day long all by herself.  Luckily, Grandma Marcie came down after a week or so, and Grandpa Mark and Grandma Ginger also came down to help out with the boys.  While it was a stressful time, Heather and the boys had tons of fun with the grandparents.  So much fun and so many gifts, I am not sure they are going to want me back.  Ethan has even learned how to swim this summer.  It makes me so happy to see him shine.  Ethan led by example, and helped Gavin get over his fears and swim by himself too. Without his big brother’s push, I don’t think Gavin would have ever taken off his life vest. Now, he is swimming just as good as Ethan.  Way to go big brother! 

While maintaining a glimmer of hope for a return to Behavior Exchange, Heather continues the process of enrolling Ethan into the new center.  However, Heather just doesn’t feel right about it.  A week before Ethan was scheduled to start, Heather and I just do not think it is the right fit.  But again, what choice do we have.  Not taking no for an answer, Heather began to investigate other options and other opportunities.  After shedding lots of tears and pulling a few strands of hair out, she did it.  She found a way, a private insurance company that has worked well with Behavior Exchange in the past.  It would cost us a bit more, but we should be able to return to Behavior Exchange.  Due to the additional expense of the new insurance plan, we decided it be best if we did not move this year.  The new insurance plan has taken into effect as of today.  Theoretically, everything is on a path back to Behavior Exchange.  We are hoping to return in a couple of weeks.

Meanwhile, back in Ada, classes ended last week for me, so I am pretty much trying to take advantage of the downtime.  I am renting a dorm room for the summer at a local college. However, I received a call from the college this evening, and now they are kicking me out. Apparently, they have some painting and fumigating to do, so I have to move out by the end of the week.  I am not scheduled to go back home for another 2 and a half weeks. On one hand, I am stoked to go back home. On the other, I was still holding out hope that I may actually learn something at the EPA, so I am kind of bummed too. Either way, Dad’s coming home in 3 days.

Gavin has had a pretty good summer. Although it’s not been with Mom, he has gotten lots of one on one time with the grandparents. He’s accumulated a years worth of new toys in just a few weeks including this way cool pirate ship from Grandpa Mark.  He really enjoys going to the library. He completed the library’s summer reading challenge and received lots of cool stuff including free ice cream and a free pool pass. He liked the reading list so much that Heather made him a new one.  Once he “reads” another 20 books, he gets to download a new Harry Potter game for the iPad.  As of last night, he completed his second reedling list of the summer and I am certain he is at home enjoying his game right now.

It has been a very tumultuous summer with many ups and downs.  As it is winding down, life appears to be returning to somewhat normal.  Ethan should be starting school soon with Heather soon to follow.  I will be home in a few short days, and Gavin will no longer be the self-proclaimed, “King of the House”. 

We began with an idea of a revitalizing summer. A time to recover from a tough year, but the universe decided to throw us another curve ball, then, another and then one more for good measure.  At first, we were knocked down, but we stuck together and made it through.  Not only did we make it through, but we may be even stronger as a result.  This fall promises more challenges. Heather will begin another school year. I will need to find a new job, as I was forced to quit my part time gig a Costco to take the EPA internship. Ethan will be continuing his medical treatments, and Gavin may decide to turn into a teenager this year.  However, if we made it through this summer, I think we’ll be alright. 

Ethan biomedical update

  Hello again everyone. I am finally writing the blog update for Ethan’s new treatment. Gavin is just having so much fun at McDonalds right now, so I’m taking the opportunity to write.  We finished the intense part of Ethan’s yeast treatment a few months ago. However, we are treating him for the yeast again right now.  He snuck and got some bread at Christmas time, so the opportune fungus seized the moment and set up camp in Ethan’s gut, again. Luckily, this time we spotted the signs of the squatter before it could build a more permanent home and invite his friends over.  This will be an ongoing problem for Ethan for years to come. His next treatment could also assist in helping keep the yeast under control.   

On to new efforts, we recently had a test done on Ethan called a porphyrin test. This test is for heavy metals.  The test revealed an incredibly high level of lead and elevated amounts of mercury. Ethan’s doc believes that these metals are preventing Ethan’s body from completing several important processes. Most notably, the methylation cycle. The methylation cycle plays a crucial role in the body. It is involved in detoxification, immune function, maintaining DNA, energy production, mood balancing, and controlling inflammation.  Unfortunately, the presence of metals can block certain biochemicals important to methylation such as methionine, homocysteine, and SAMe thus stopping the cycle from completing.  Heavy metals can also contribute to Ethan’s yeast problem. 

We had two options for treatment, natural chelation or medical chelation. The medical option poses more risk, cost, and comes with it’s own set of challenges.  We have started naturally treating with supplements. Basically, we are supplementing what’s being blocked by the metals. We are hoping that once Ethan’s body gets theses chemicals, his methylation cycle will respond and began to start spinning on it’s own. If this happens, Ethan’s body will begin purging itself of these unwanted metals and other toxins.  We will continue this treatment for another month or so, and then retest to see if his body is responding.  

Ethan has been doing amazingly these past few months. He is on a steady incline, with the exception of a couple weeks due to the yeast.  He is speaking better. He is more alert and in tune. The other day he responded to Mickey Mouse. Mickey asked if that was a red gooey fish, and Ethan correctly said no.  

He is starting to be really social as he’s enjoying having people over to the house. Gavin’s birthday party was just great for him, and he got upset when grandma left just a few days ago.  He is also responding more to us when we give him praise. He really is noticing our reactions when we are happy with him.  He looks at out faces when he knows he’s done something good. 

Knocking on wood here, we really have seemed to have a breakthrough in the potty training.  Just a few weeks ago, we never seemed to make it to ABA without having an accident in the car. During ABA, Ethan would go through 8-12 pairs of shorts/undies. I packed his bag with 15 new outfits on Monday. Here it is Friday, and he’s only had 1 accident all week.  Maybe, we will one day be able to pack just a regular back pack instead of a suit case. A couple weeks ago, I started a strategy that seemed to help with the problem in the car. Ethan loves music, so I decided to use the music as a reinforcer for staying dry. I loaded him in the car with no pants, just underwear. That way I could feel if he was wet. After every song, I asked him if he was wet. When he was dry, I gave him lots of praise, a high five, and more music. This worked from day 1. Since then, the rest of the day has just clicked. He hasn’t been having accidents anywhere near the pace he was. I’m not saying it was all me or anything, but it is awful coincidental ;)  Finally, the last 18 months of potty training is seeing some progress. Please excuse me while I knock on some more wood and throw some salt over my shoulder.  

Ethan’s got a new therapist now. Her name is Kristin, and so far we are very happy with her. They have been working together for a few weeks now, and Ethan seems to be responding well to her. We still have Ms Amanda several times a week, and Ethan usually works with another therapist, Alina a couple times a week. We are very pleased with the therapy team Ethan has right now. They are doing a great job, and Ethan works hard for them. Maybe one of them should stay at our house and get him to sleep passed 5am.  Sounds like a good idea don’t ya think??