Tuesday, July 22, 2014

Father Knows Best

If you have been following closely, you will know that we have been experimenting with Ben's nutrition in hopes to eliminate constipation, decrease hyperactivity at night and increase sleep productivity. In addition to Ben's nighttime antics, he started about a month ago, tearing off his pull-up, typically leaving a horrible mess of pull-up pieces everywhere. In my last post, The Real Houdini, I admitted that, we as parents, had lost that battle.

But it is the war we are after and Ryan, in his infinite wisdom suggested that the reason for the pull-up disappearing act was that they were too tight. I had my doubts, but being of a gender with different parts, I did not have much experience in this department and found it hard to argue. With no other solutions on the forefront, I picked up larger pull-ups, adult size small. 

It has been five nights with the new pull-up and it has remained on his body each night. We both get points - Ben for communicating his discomfort and Ryan for understanding these non-verbal cues.

Parents - 1
Ben - 2 

Monday, July 21, 2014

The Real Houdini

Ben's sleeping has improved quite a bit with the recent changes in diet. His hyperactivity has all but disappeared. The last behavior still to remain is his obsession with taking off his clothes and pull-up.  

We have become creative in our methods to beat Ben in this "game." For awhile, we were letting him sleep naked, but he had accidents frequently, waking him in the night, so we stopped. Then, we tried long pants, underwear over the pull-up, long johns and shorts, buttoned shorts and the latest, drawstring tied tightly inside shorts; my husband's mastermind. 

Two night ago, we used the drawstring method and left Ben in his room. Minutes later, he crawled out butt naked. He had untied the shorts and pulled everything off. 

Last night, with experience under my belt, I double knotted the shorts and put him to bed.  I have 30 years on this kid, I can beat him at this game and besides, no one beats a double knot. 

Minutes later, Ben came out, dressed. Victory at last! 

Ben hung out for a bit on the couch. When he was ready for sleep, I checked his pull-up to see if he was wet. Strange, but I could not feel the pull-up. Did I forget to put one on in my excitement to double knot? No, I clearly remember putting one on him. 

Shaking my head and tired from a long day, I walked to Ben's room. On his bed, was the pull-up, intact except for a break on each side. 

Ben - 1               Parents - 0

Friday, July 18, 2014

Take Me Out to the Ballgame

Last week, Ryan and Ben were on their own. I took the other two boys to visit family while Ryan worked and Ben attended Rainbow Camp. Several weeks prior, Ryan was invited to a departmental team building event for his work - attending an evening Charlotte Knights Baseball game at the new stadium.

Since family members were invited to attend, Ryan wanted to take Ben to the game. However, handicap seating is only in certain areas and it would mean he would sit away from the other 50 co-workers - making the idea of a team builder null and void. Ryan struggled with this for a few weeks. I lined up someone to stay with Ben, thinking the decision had been made for Ryan to go alone.

One day, Ryan called me from work, excited and relieved. He had a meeting with his two supervisors, and at the end of the meeting he shared his dilemma with them about the baseball game and seating arrangements needed for Ben. Within hours, the seats for the game were changed to include the handicap section for Ben.

The night of the game, the entire department sat together, Ben was welcomed by the co-workers and Ryan was a happy dad.

Oops, I forgot to ask who won the game.

I think everyone won this time.

Thursday, July 17, 2014

Rainbow Camp 2014 - Week Ends Too Fast

Ben may have been asleep in the car minutes before he got to camp, but once he awoke and realized where he was, his excitement was visible. Rainbow Camp is part fun, part spiritual activities, but mostly about forming bonds and friendships with other campers, buddies and counselors. Hugs are abundant at this camp.

This year, during their week of training, the counselors watched as a few of the parents of the campers talked about their child, the best ways to work with their child and finally, what Rainbow Camp means to their family in a video. Below is the video of me speaking about these things. I was lucky to have some help from Ryan, a family friend.

Elizabeth, Ben's former teacher and now our family friend
never misses a chance to give Ben a hug.

Each day, a team of youth counselors create a puppet show for the group.

Singing and dancing are always part of the fun.

Play the game, "Where's Ben?"

Tuesday, July 15, 2014

Scale Shock!

Today we visited Ben's new neurologist, Dr. G. Ben's former neurologist, Dr. N, retired. For eight years, she developed plans for Ben's seizures, sleep issues, genetic testing and then tracked his progress with communication and cognitive abilities. Although she mostly used words that went over my head, she spent time with us, listening about developments and asking questions. We were never rushed and Dr. N was always precise and direct. At times, I wanted to remind her that Ben was not a toddler anymore and baby talk was no longer necessary, but even still, Dr. N was a hard act to follow.

As with any doctor visit, the patient must be weighed. This office had a cool roll-on scale for a wheelchair. This saved me the lovely ordeal of holding Ben and getting weighed together, and then stepping back on for a solo weigh. This time, Ben's chair was weighed separately. The scale read 105 lbs for the chair and Ben. This confused me, but I had little time to contemplate because I had to grab Ben so the chair could be weighed alone. The scale read 15 lbs for the chair alone.

My brain was having a "Does Not Compute" moment. Ben weighed 72 lbs with his shoes and braces at his March visit to the doctor. The math was not correct. I questioned the nurse and she said she had to do the computations. I waited impatiently.

Finally in the exam room, she casually said that Ben's weight was 88 lbs, subtracting 2 lbs for shoes and braces. Luckily, I was sitting, otherwise I may have fainted. All of the last several months were making sense. Ben had been so difficult for me to lift, even Ryan was feeling the strain. We chalked it up to us getting old. Possibly Ben's sleep disturbances were caused by his growth - he gained 16 lbs since March. My world was spinning.

I texted Ryan the news. His response, "STOP feeding him." Always ready with a joke, my husband.

Fortunately, I had a good hour or so to calm down before the doctor came in. Dr. G was a very normal, down to earth person. His approach was practical - how do we make Ben's life the happiest it can be? He supported our nutritional approaches to solving sleep and constipation issues. He would have suggested we take Ben off the sleeping aids if we had not done so already. He started a weaning off process from one of Ben's seizure medicines (something I had hoped for) and scheduled an EEG for the near future.

We left with a medicine plan, nutritionist referral and a three month follow-up appointment.

Companion Post: Weighty Retraction

Thursday, July 10, 2014

The Doctor Is In

When I researched nutrition for the Charlotte Parent article, I interviewed Dr. Sheila Kilbane. The information Dr. Kilbane shared with me helped to transform Ben's diet. Over the past few weeks we have kept in contact through email. She offered to share some of her posts, resources and knowledge with eSpeciallyBen readers. 

The title to her first post is misleading - it is not just about pediasure. Take a look at it even if you are not a pediasure user. I promise that you will learn something new.

Wednesday, July 9, 2014

Part 3 of Detox

We are in week three of Ben's dairy free diet. There are mostly positive results with constipation being relieved by the addition of a daily probiotic and the spinach and chia seeds added to his smoothie. Ben seems to be eating more solid foods because he is not filled up with milk. 

My skepticism about milk affecting Ben's sleeping and hyperactivity in the evenings is still there. I am tracking it and will be able to see patterns after a few more weeks.  I do not intend on adding dairy back into his diet at the four week mark. I think more time is needed to make a decision about dairy being connected to his sleep and craziness at night. 

It has been easy to make these changes in diet. Most stores, even the ones not known for their organic and expensive products, like Target, Aldi and Food Lion carry almond milk. The coconut yogurt (yogurt made from coconuts) and chia seeds is available at a grocery store that carries a large variety of food choices. Spinach is available everywhere. Probiotics are the most expensive investment and can be purchased in bulk at one of the warehouse stores such as BJs or Cosco at a lower cost.

My best guess is that we will continue this course, plan a visit with a nutritionist and then make decisions based on any testing and actual results we have seen.

Tuesday, July 8, 2014

Rainbow Camp 2014

Rainbow Camp is an annual camp sponsored by a local church. This is a photo with Ben's counselor and buddy on the very first day. The buddy is Ally and she is the same age as Ben. The counselor, Jacob, is a member of the youth group at the church. He participated in a week long training before serving as Ben's buddy. I will share more as the week goes on. 

Wednesday, July 2, 2014

Run For Your Life

In late spring, I purchased a new pair of running shoes. While at the store, I noticed a flyer publicizing an upcoming running series. Each Tuesday during the month of June, at a nearby high school, this running company sponsored 50 meter, 100 meter, 400 meter, 400 meter relay and 1 mile races. 
Thinking this may be a fun way to introduce Logan to running, we agreed to go the first night and check it out. As a last minute thought, I called the running store that afternoon and asked if they would allow a wheelchair runner. The woman who answered the phone thought it would be fine.

Juliana is one of Ben's direct care providers, and I did not tell her about our plans beforehand. She is a go-with-the-flow kind of person and I was not sure what to expect, so when she arrived at our house in running attire, I knew something in the cosmic sphere was working in our favor. Juliana, in the year and a half she has worked with our family, has never showed up in running clothes. When I filled her in on my idea, she was game, even excited about the idea.

We arrived at the 6pm starting time and was greeted by the coach who ran the event, "I guess this is our wheelchair runner!" We felt welcomed immediately.

The participants for the 50 meter run were called. Kids gathered on the track and raced by age and if enough kids, sometimes by gender too.  I was worried they would separate Ben out, but he was included with the other 10 year old boys.
After the first race, they called the 100 meter. Juliana used Ben's NOVA Chat to see if he wanted to run the next race. A quick YES, and they were on their way.

For the next four weeks, Ben participated in the 50, 100 and 400 meter relay. Juliana was there every week, ready for the challenge to run pushing at least 90 lbs of boy and chair. Yes, I could have run with Ben, and perhaps I will in the future, but cheering Ben on felt very good.
Turns out that Run For Your Life, has been doing this annual race for over 20 years. We met a family who runs with Team Hoyt who did this same series with their own children, but now were there with their grandchildren. 
Count us in for next year!

Tuesday, July 1, 2014

Part 2 of Detox

About three days after I stopped the Benadryl, and continued "detoxing" Ben from all his sleep aids, Michele Huggins, the editor at Charlotte Parent Magazine, emailed me about writing an article about the benefits of nutrition on special needs children for their September issue of Exceptional Child. I agreed immediately, excited that she would ask me to write again for the magazine.

I knew nothing about nutrition for special needs children except for a few buzzwords like gluten-free and, well... that's it.

Two days later, armed with articles and research about nutrition, information from interviews with nutritionists, doctors and families with success stories, I decided to launch Ben on a four week Casein Elimination Diet.

You will have to wait for my article to publish to find out all I learned, but what I will share is that I was a HUGE skeptic before I started my research. The time, money and energy were enough for me to say "no" to any change in diet, let alone Ben's reaction.

With no plan for what to do about Ben's sleep problems and lacking in sleep ourselves, we decided the four week dairy free diet was worth a shot.

Why dairy and not gluten? A few things I heard from the interviews with the doctors and nutritionists made me choose dairy. Ben's diet contained more dairy than gluten and would be the easiest to change with substitutes. It was also an easy shot in the dark.

It has not been hard to make the changes, and Ben has not complained one bit. His eating routine has changed somewhat, preferring his calories later in the day, rather than when he first wakes up, but other than that, he is the same old Ben, with better sleeping and pooping routines.

Changes made:
1. Avoid milk, ice cream, yogurt, cheese or butter. Avoid baked goods with these items also.
2. Add probiotic - one pill per day. We are using Culturelle.
3. Add chia seeds to smoothie*.
4. Add small amount of spinach (5 leaves) or kale to smoothie.
5. Vary fruit in smoothie.
6. Replace milk with Almond Milk.
7. Replace yogurt with coconut milk yogurt.
8. Record sleep, probiotic intake and bowel movements on a calendar.

Ben typically has one smoothie (12-16 oz.) per day and then eats a regular diet of kid friendly food for other meals.

Results after 10 Days:
1. No more constipation. Removed Miralax from diet.
2. Falls asleep in his bed at a reasonable time without any sleep aids.
3. Calmer and quieter in evening - most crazy and wild behavior has disappeared.

The addition of varied fruits and vegetables combined with the probiotic may be the reason for the change in BMs. I have not been able to find anything in the literature about constipation making it difficult to go to sleep so I do not think that was the sole cause of his night time antics. In a few articles, I have read that dairy may affect sleep.

Something unrelated to nutrition is that Ben wants to sleep without any clothing or undergarments. We have a nudist in the house! We are letting him sleep like this, and it seems to make him happy.

After ten days, I am still skeptical, or perhaps, wary that this may be some sort of coincidence. I need a longer time for this to work. My hope is that he is allergic/intolerant/affected by dairy and that his body responds by fighting sleep and acting crazy. Fingers crossed, please.

Ben has an appointment with a new neurologist in two weeks. I will ask for a referral to a nutritionist for a full evaluation, something he has never had completed.

To be continued...