Saturday, February 23, 2013

Our Journey Into Our Child's Mind: Part One

I had a really difficult time giving this post a title. This post has been a long time coming, and I wasn't sure if it would happen at all.  For a while I thought I shouldn't post about it because I didn't want people to panic (family, friends) and because I wasn't sure it was appropriate to blog about since it seems sort of like a private family matter.  It wasn't until I saw the mealtime hostage blog that I realized I should probably share this story because other parents are probably dealing with the same thing and may be confused about where to turn.  Because the story is so long it will have to be in parts.  I'm not sure about exact/dates/times (this is also why I've been delaying this post, because I want to make sure I'm writing the story out correctly) but the best I can offer now will be approximations.  I can confirm these approximations at a later time. 

This will probably be super, duper long, as I am wordy and like I said, there's a lot of information to be shared.  

So, what the heck am I talking about above?  In a nutshell, Aias has been dealing with some serious eating issues.  At the moment he's on the verge of an Infantile Anorexia diagnosis.  I know, cue panic.  Don't worry, he's healthy.  Don't worry, he's not going to die. Don't worry, these are issues we can work on and we plan to.  Don't worry, this is something that is very treatable now that we've discovered it.

I feel like I need to start from the very beginning. This will probably be a bit scattered and not perfectly linear, but please bear with me.  I'll start by talking about his eating history.

As most of you probably know, Aias was breastfed from birth (and still is).  From birth to just over 6 months old, he was exclusively breastfed and did not eat a single speck of food.  He had taken a bottle of pumped milk less than 5 times, and always with much resistance.  At just over 6 months, we started offering Aias some of our food, following the Baby-Led Weaning philosophy.   At first, Aias was somewhat interested in food.  He wanted to put it in his mouth like everything else in his world: toys, blocks, etc. He didn't mind tastes of things.  At this point it seemed more about putting it in this mouth than being about actually eating it.

At around 8 months, he would accept rice rusks and liked to chew on them.  We aren't sure if this was because of his enjoying the taste or if it was more related to teething.

At around 10 months we started really trying to encourage him to drink water, but he would not.  We tried over a dozen sippy cups and approaches. We did not give up, and continued to try regularly to encourage him to drink water from this point forward.

By 12 months, Aias wasn't really eating many foods at all.  His diet was probably composed of 95% breastmilk, 5% food.  He was not getting sufficient calories from solid food and we were told by many people that this was entirely normal and that he could live entirely on breastmilk for a bit longer.   He still wouldn't drink water.

By 15 months, Aias was still not really interested in food.  From time to time, he would have a bit of solid food, but it was always just for fun and breastmilk was where he got the bulk of his nutrition.  He still wouldn't drink water.

By 18 months, we were starting to get a little concerned. Aias would still not drink water.  He would not drink cow/almond/rice/soy milk.  He just didn't want it and wasn't interested in it.  In fact, he became panicked and enraged when he was offered it in the first place. Disinterest seemed to turn into outright aversion. 

Between 10 and 18 months, there were a few foods Aias did seem willing to eat from time to time and would sometimes accept at least a bite of, although he wouldn't really eat all that much of these foods and he was definitely not consuming enough of them to count as a real meal, even for a small baby.  Some of these foods included rice, plain noodles, peas, shrimp, olives, cheese, pickles, blueberries, fries, crackers. It seemed like a pretty decent spread.  Of course, he wouldn't be willing to accept all of these at once, rather, he would go in 3-4 day phases.  One day he'd accept pickle and olive, a few days later he'd react to them as if we were offering him poison.

By 2 years old, Aias was still nursing a dozen or more times a day.  He was only drinking about 1 ounce of water a day, if that.  He was eating MAYBE one small toddler serving of a single food in a given day... maybe.  He was willing to consume crackers and rice from time to time, mostly if the milk source (me) wasn't around.  He would sometimes eat salmon roe.  He had stopped eating anything with any real substance and wouldn't touch things like pickles, olives, blueberries, peas, shrimp, etc. A few bites of food and he would frantically demand milk. 

We were worried about Aias's eating habits, but we figured he was just picky.  We thought he'd grow out of it.  We were a little shocked he was 2 years old and nursing like an infant, but we figured he would eventually wean himself. 

Now, while all of these eating habits were going on, Aias had some concurrent behavioural issues.  He had gone from being a really happy baby to being extremely temperamental.  His mood went from awesome to HORRIBLE in a split second, triggered by seemingly nothing, and constantly all day, everyday.  We later figured out this was linked to being perpetually hungry and thirsty.  His sleep was also horrible, as he had probably only slept through the night once (ever) and was still waking up 5-6 times a night, sometimes more.  We later figured out that this was also due to being perpetually thirsty and hungry, so hungry and thirsty that he could not stay asleep.  We were exhausted and he was exhausted.  He never wanted to go to bed until 10 or 11, and he wanted to sleep in every morning but it wasn't really possible with our schedule.  He would nap in the stroller for sometimes 1 hour, or sometimes 5 hours a day. It was never consistent.

This was all concerning to us.  It also concerned us that Aias didn't seem to be speaking as much as other children his age.  I don't recall the exact date, but shortly after Aias turned 2 he was referred to speech therapy.

We went into speech therapy expecting we'd be talking mostly about speech... that makes sense, right?  Of course, they wanted to get a holistic view of what Aias was like, what his life was like, etc.  During the first meeting, the speech pathologist chatted with me and observed Aias.  I had mentioned that some friends had suggested Aias seemed to be on the autism spectrum due to his behaviors, reactions, and interests but she told me pretty much immediately that she doubted very much that Aias was autistic due to some of his interactions, eye contact, etc. Of course, she couldn't rule it out.  She observed his speech and his behaviour, and she let me know that while his speech did seem to be worth looking at, her biggest concern was his behaviour.  His moods were volatile and we hadn't pieced together at this point that while a lot of it was temperament, a huge piece of it was also his level of hunger or thirst.  At this point Aias did ask for milk by saying "milk," but he did not understand the concepts of thirst or hunger.  He did not realize that when he was hungry, what he needed was food. He did not realize when he was thirsty, that he needed a drink.

During this meeting I took the MacArthur Bates Communicative Development Inventory with Aias and we determined that he understood 227 words and was able to communicate 78 words. This was considered within the range of normal, but on the lower end.

The speech pathologist scheduled several appointments with us, and then referred us to the Infant Development Program with Vancouver Supported Child Development through the BC Centre for Ability.  We met with a consultant through this program, and she observed Aias, and we were also hooked up with the Developmental Disabilities Association and a representative there.  We were also referred to a paediatrician.

At this point I was sort of freaking out.  What was wrong with our kid? Was he disabled? Did he have special needs?  Through all these appointments, there were many "theories" thrown around.  Autism was something that often came up, as his behaviours seemed similar to some kids with autism, but everyone agreed they'd be very surprised if Aias was autistic based on their observations.  Sensory Processing Disorder was also talked about, and we were very much headed in this direction until very recently.  His behaviour was a huge issue as he was completely, 100% uncooperative with the professionals for the first several months, throwing tantrums, demanding milk, trying to escape the room we were in, etc.  At one point he was basically suspended from speech therapy because the Speech Pathologist, while she sympathized, felt he wasn't able to participate in the therapy because of his completely out of control behaviour. 

Almost right away, one suggestion that was made by every professional was that Aias be put into preschool for two reasons:

1.  To see if his speech improved (they were curious if he just wasn't speaking much because he was with his parents 24/7 and we were able to meet his needs without him asking)

2.  To see if he behaved temperamentally in this setting.

I was a bit sad about the preschool thing as we are most likely planning on homeschooling and I feel like 2-3 is a VERY young age for him to suddenly be away from me during the day when it isn't within his comfort zone, but I wanted to make sure that we tried everything, for his own sake.   It was only twice a week for 2.5 hours but that still seemed long. 

We enrolled Aias in preschool for September 2012, and he was put into a "pre" pre-school  at the local community centre to prepare him for this.  I was shocked that Aias went willingly, without crying, and seemed to really enjoy himself at preschool.  We never once had to force him to go, he always went in willingly and seemed to really enjoy the program.  This was where other people, outside our family, really started noticing Aias's strange relationship with food.

During his summer preschool program, Aias was unwilling to eat snack with others around.  He would need to hide under a table, in private, while eating his snack.  If anyone touched his snack, talked about his snack, or wanted to get near him while he was eating it, these things "invalidated" the snack and he would be done.  The preschool teachers noticed this and brought it to our attention. 

Of course, at this time we were STILL dealing with the "picky" eating.  Food was a constant battle in our home.  Aias would hardly eat anything.  His sleep was horrible.  He was nursing constantly.  He was barely drinking any liquid.  It was very, very frustrating.  He would be in a good mood within 15-20 minutes of eating, but he would only ever take a "hit" of food, or just enough to normalize his blood sugar, but it would soon wear off and hunger would send him into a sensitive state and sometimes an all out tantrum would result.

Here are some notes from our intake with Supported Child Development:

1.  What does your child like and dislike?:

Likes: loves trains and train equipment, how things work, wheels, lego and building toys, his friends, playing with water

Dislikes: food, crowds, noisy environments, not being in full control

2.  Daily routine:

Lives at home with mom and dad in a housing co-op and knows most of his neighbours. He has a dog named Max. His mom runs a family child care and he plays with a child his age and a baby on a regular basis.  His sleep schedule has been influenced by the family child care and schedules of the children being cared for. Currently working on a predictable routine and schedule.  The baby currently arrives at 8:30am and then we go to drop-in programming.  Aias has to be woken up or will sometimes wake up on his own if you turn on the lights, make natural morning noises. Meals are 7:45-8am (breakfast), 10am snack, noon lunch, snack 3pm, dinner varies greatly based on when dad gets home from work (between 5pm and 8pm). 

3.  Environment: 

- Very particular about clothing; fit, style, material
- Has refused to wear shoes until family found a pair of specific crocs he would wear.  Likes only socks and shoes (no boots, no sandals)
- Has refused to wear a new raincoat that is the same material as his prior muddy buddy

4. Learning Style:

- Likes to explore and play on his own
- Will watch to learn
- Does not like to be instructed
- Will ask for help

5.  Behavior:

- May be very determined to have his way and to be in control of a situation
- May get upset, frustrated, or angry and takes a long time to calm.  He may have a meltdown (tantrum, lying on the ground, run away, kick, scream, hit his head on the floor, cry, flail around) for 20+ minutes on a regular basis. Used to have 2-3 tantrums per day but this has improved as his ability to communicate has increased.  
- Will hold hands with parents on the street
- Demands milk throughout the day (to nurse)

At preschool he is very easy going, able to follow the group in play and transitions, may wander and not engage in play at times. 

6.  Safety:

- Will hold hands near a street

7.  Health/Medical:

- Seeing paediatrician and a referral has been made to Sunny Hill re: global developmental assessment
- Has been seeing a Speech Language Pathologist for 6 months and is currently having weekly sessions
- Has been seeing an IDP worker since the summer and has been referred to a nutrition consultant regarding Aias's diet and eating issues (has small appetite, doesn't enjoy food)
- Small for his age
- Hearing is ok
- Vision still to be checked
- No allergies known
- Very healthy and seldom gets sick

Blah blah blah, there are pages and pages of other things but they don't seem very relevant.  Then it comes to eating and sleeping.

- Still nurses and prefers to nurse for calories
- Does not seem to enjoy food and has little to no appetite
- Will eat small amounts of food, be very selective, and take a long time to eat
- Does not like to drink water
- Will accept diluted juice (1 part juice to 6 parts water) in a specific sippy cup
- Prefers crackers and beige foods.  
- Willing to eat no solid food for up to 48 hours (will nurse)
- Will wake up 1-3 times on an average night to nurse
- Appearance and texture of food is very important.  Rejects most foods. 
- Will reject food if others comment on the food (how he likes it, that it looks good, etc). 
- At preschool he rarely eats all of his small snack, sometimes won't eat snack at all, doesn't show interest in food or food related things.  
We were referred to a nutritionist and she came to our house and observed a meal with Aias.  It was not a pretty scene.  We talked a lot about different methods we've tried in the past to get Aias to try new foods and eat, and we were sort of shocked at the number of methods we had tried.  It almost seemed ridiculous, and sort of depressing at the same time.   It seemed like nothing would work.  At the end of the long consultation, we were given the plan I posted on here a few months ago, which you can find here. 

A major part of this plan was to cut back the nursing.  I was still committed to letting him wean himself, but he was starting to really need food and it seemed clear this wasn't going to happen if he was nursing constantly.  The theory was that Aias would probably eat more solid foods if we cut back on the nursing.  We implemented a rule that Aias would nurse once in the morning (when he woke up) and once in the evening (before bed).  If he asked during the day, he could be offered a hug (comfort), a drink (thirst), or a snack (hunger) to cover the reasons he would have wanted to nurse.  This actually worked really well and we are still sticking to it to this day.  The rest of the plan we stuck to almost to a T for at least a month, and we stick to it mostly now.  So far it has helped with one thing; he drinks more liquid now.  He now drinks a 1 part juice, 6 parts water dilution about 16 ounces a day, which is a LOT for him.  He's also willing to drink chocolate milk.

The eating however... has not improved.  In fact, it's become even more of a raging battle as Aias has dwindled from having a few safe foods to having one or two. 

For a while we thought Aias had Sensory Processing Disorder as everything seemed to be pointing to that, but virtually all of the things that made it seem this way are things he has now outgrown.  He will now wear just about any shoes, any coat, any gloves, etc.  The only issues that remain are the issues related to food, and even those don't seem to be sensory related according to the professionals.  After several months of working with these qualified professionals, it became obvious to all of them (and to us) that the issue was that of eating and food.

Aias has had blood tests, he has seen an allergist, and he regularly sees a paediatrician to monitor his height and weight.  His blood tests were entirely normal.  Of the allergy tests he took, he was determined to not have any food allergies.  Aias does not have any physical pain associated with food.  He has not had any serious food related traumas, other than one incident when he picked up wasabi instead of avocado at a sushi restaurant at around 10 months and another time a  few months later where he tasted and was disgusted with hummus that was made with an absurd amount of garlic.  Aias simply does not like food; he has no interest in it.

When Aias was born he was 6lbs 9oz and was 20 inches long.  We were told this meant he was in the 17th percentile for weight and 60th percentile for height.  At 3 years and 3 months old, he is 26 lbs and 35 inches tall, which means he is in the 5th percentile for weight and the 7th percentile for height.  We were never expecting to have a huge child; I'm about 5'2 and my partner is about 5'7 and we are both average weight.  At the same time, Aias should not be dropping percentiles like this.  He should also be eating. Watching him grow older but not grow larger at even close to the same rate of other kids has been pretty hard on us emotionally;  we're always being told how tiny he is, how other kids are soooo much bigger than him, etc.  I know people don't mean any harm, but it does sort of strike a pain nerve inside. 

The paediatrician has said that we should not pay much attention to all "this percentile" business, and that as long as Aias is growing, developing, and not losing weight, he is happy.  This past month Aias started at 30lbs, and has since dropped 3.  He was sick for about 2 days, but that should not account for a lost of 3lbs, or about 10% of his body weight.  Since he is so unwilling to eat, gaining the weight back won't happen very quickly. At school on Tuesday, I had to send him in 12-18 month pants because his other pants wouldn't stay on.  Even those were falling down and had to me cinched tightly and awkwardly so they'd stay up. 

This week I checked in with a few of these professionals, as we are still seeing all of them, and Infantile Anorexia was brought up again.   It looks like this could be the issue we are dealing with.  We were both really hoping there would be NO diagnosis, and that they would tell us we needed a parenting class or something, or that nothing was wrong, or that maybe we needed to be more authoritarian when it came to food.  We were hoping we'd just be told we were paranoid, or worrying about nothing, or that he would outgrow this and be just fine.  And then, this.

We obviously have mixed feelings about this.  It sucks, of course, to have a kid that has an issue like this. At the same time, we feel relieved that it isn't a serious chronic or terminal illness, and that it isn't something that will necessarily follow him for the rest of his life.  In reading a blog entry about Infantile Anorexia that And Mommy Makes 3 sent us, we actually feel somewhat relieved to know that other parents and kids have experienced this exact thing we are experiencing. We also feel relieved to know that treatment is largely successful.

I'm not sure where we go from here, but I'm feeling confident that we are in good hands and that we can nail this before it stunts his growth and development for life. I'll  keep everyone on here updated as well.

One thing I will ask of anyone (assuming you read this far, wow, that's a lot of reading): please try and hold back with the "tips" and "tricks" for dealing with a "picky" eater.  I can't even begin to list all the things we've tried. In fact, I probably could (maybe I will in the future) but it would probably almost have doubled the length of this entry and I'm not even exaggerating.  
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