Friday, January 4, 2013

Anxious Ayden

I've written some on here about Ayden's bout of Anxious that started last spring, but not all of it.  Not the whole story.  Crazy how this stuff can creep up on us, as we are busy doing life.

Last April we went on a road trip to Vernon to visit my parents.  On the way up, Matthew (who gets motion sickness) barfed in the backseat (in a bag) next to Ayden (who has a particular fear of throwing up).  We pulled over at the Coquihala summit to help Matthew and toss his bag o' barf, and Ayden leapt out into a snowbank in his underwear to get away from the smell.  He was horrified.  Pale, shaking, overcome.  He's a pretty modest guy who wouldn't do anything so illogical as walk around in the snow with no shoes, so you can see how frightened he must have been to shoot out of the van door like a shoeless bullet in his underpants!  It was pretty hysterical, except at the same time we felt pretty bad for him.

That night he had trouble falling asleep.  This wasn't that unusual.  He's always been an incredible night owl, and needed less sleep than all the researchers say kids need.  But that night was later than usual.  And the next night was worse.

The following week he came home from school sick.  He felt nauseous, was pale, gagging, and lethargic.  Until ten minutes after I got him home.  Then he was bouncing on the couch like normal.  I took him to gymnastics: they called me to pick him up because he was sick.  Same deal: nausea, gagging, pale, sick.  Get home?  Business as usual.

He's also always had food "issues."  As in, he hates most food.   But suddenly, it was so much worse.  Sandwich meat, for example, was 'too warm' for consumption by lunchtime.  Yogurt was 'rotten' unless frozen.  Fruit was 'moldy' if it had a bruise.  Food that touched other food was contaminated.  He was constantly afraid of throwing up.

He was staying up til one, two, or three o'clock in the morning every night and wanted us to lie with him for hours until he fell asleep.  He was certain that he had a breathing problem; "something wrong with my breathing, and also swallowing."  He came home from school and gymnastics repeatedly.  He was afraid that either he would throw up, or he would have a breathing difficulty so severe that he would die.  He became constantly aware of his breath, and felt vigilant that he needed to pay attention to his breathing because if he stopped paying attention to it, he would stop breathing and die before he realized it.  He bit all his fingernails, coughed or cleared his throat constantly, and had his fingers in his mouth all the time.  As he was drifting off to sleep with either Brent or I next to him, he would leap up and cry out, "MOMMY!" all shaking and afraid.  Backrubs and warm milk and chamomile tea and lavender oil and soothing music all made no difference.  The only thing that helped would be if I lay next to him and talked about his deepest fears, using my cognitive behavioral therapy tools to help him come up with comforting thoughts.  Stuff like,

Your body is smart and knows what it is doing.  It will breathe for you while you are sleeping, automatically. Kids don't die very often.  If you have breathing difficulties bad enough to threaten your life, mommy and daddy will get you help.  We will take you to the hospital and the doctors and nurses will help you.

Sometimes that helped, sometimes it didn't.  When he would talk about dying and how scary that is, I would go into that:

If you did die, it would feel a bit scary because it would not be familiar, but you would go to heaven.  There are people who love you who have already died and who would meet you there, and take care of you while you wait for mommy and daddy and your brothers and sister to join you. Grandma Kadie.  Grandpa Gigi.  Daddy's grandpas.  Jesus will be with you.  Even if it takes sixty years for us to join you, that much time feels like just a short time in heaven, because heaven is for eternity.  Heaven is full of peace and happiness, and no pain or fear.  It is a beautiful place.  You probably won't go to heaven before me, because most people have their parents go first when they are very old.  But if you did, you would be taken care of while you wait for us.

It helped.  He liked it when I talked about heaven, and he would drift off to sleep.  But this is not an okay place to live in, indefinitely.  We knew something was wrong, but we didn't know exactly what to do about it.

A friend of mine suggested trying a low dose of melatonin to help him sleep.He wouldn't eat the fish oils I bought him, thinking they help MY anxiety, maybe they will help his?  I knew that lack of sleep was compounding the problem, and thought that perhaps more sleep would bring him closer to rational and balanced, and then we could do more of the cognitive behavioral therapy (CBT) thought pattern changes and get our Ayden back.  He was pale, drawn, exceedingly tired, had dark circles under his eyes, and was constantly eating his fingers, not eating his food, breathing weird, and coming home sick.    Ayden is normally spunky, intelligent, quirky, and lots of fun.
My friend's daughter had gone through a rough patch with sleep and emotional regulation, so she tried a low dose melatonin every night for two weeks, and it reset her sleep cycle and she was much better.  So we tried that.  I figured if two weeks didn't reset things, we would take him to the doctor.

The melatonin helped enormously with his sleep.  He would fall asleep around 7:30 at night (!!! he's always been a night owl and NEVER fell asleep by 7:30 since he was two years old) and sleep like the dead until 7:30 or 8 in the morning.  It was like the hallelujah chorus in our house.  We were so relieved!  He was MUCH better rested and his symptoms improved somewhat, but they didn't disappear.  After the two weeks was finished?  He went right back to one or two or three o'clock in the morning, terrified to fall asleep, and everything else got worse.  So I took him to our doctor.  She listened carefully to the history of what happened, from the barfing in the car to the melatonin solution.  She asked careful questions about illness, allergies, screen time, exercise level, and his school experience (does he like it, is there anyone or anything at school that frightens him, is he being bullied, does he feel over pressured, does he do well in school, etc.  To that he replied, "Not very well.  Just okay."  I had to tell her, "He's in the gifted program at school."  and then she understood).  She told me he needs more exercise, she thinks he probably has anxiety, and referred us to Matthew's pediatrician.  She said, the most common causes of anxiety are low iron and thyroid issues, but diagnosing those takes blood tests and she didn't want to force him to have blood taken because he was anxious about so many things and needles could make it worse.
I disagree with her regarding Ayden's exercise level.  We don't believe organized sports are the answer to sedentary lifestyles and/or health problems in kids.  Participation in organized sports is at an all time high, and so are obesity rates among children.  Kids need to play outside lots, and have free time to roam and follow their imaginations.  They need to ride bikes and walk places and spend time bouncing around together, not further institutionalized in parent supervised team sports.

Organized sports are awesome, and we definitely want our kids to be a part of them.  There is TONS that kids learn by being involved in anything from hockey to swim team, but as far as overall exercise goes, I think it is of more benefit for kids to have free time in the woods or the backyard or roaming the neighborhood on their bikes.  This is a dying art, this roaming around, and it stunts our kids' imaginations and sense of confidence in their own abilities to do anything from climb trees to solve complex problems to walk anywhere on their own.  That's a separate issue, but I'm allowed to disagree with our doctor on that one.  I knew a lack of exercise wasn't the problem, and that we allow limited screen time so that wasn't the problem, either.  We're also pretty strict about what they SEE during their screen time, so they don't see a whole lot of scary stuff.

This being Canada, it took four months to get an appointment with the pediatrician.  Nice.  In the meantime our doctor recommended we put Ayden back on melatonin to help him sleep, and watch his exercise level and screen time.  The iron reference intrigued me, but I wasn't sure we should do anything til after we saw the pedi.  Ayden asked me about the iron at one point, and we discussed the fact that he could TRY it, it wouldn't hurt him to have a supplement and it might help, and we could tell the pedi what had happened including our experiment with iron supplements.  I got a big bottle of Floradix iron supplement, which is vegetarian based, liquid, and doesn't cause constipation or stomachaches if taken with meals.  It has high absorbability and an excellent reputation (including my own experience with it when I was pregnant).  Ayden hates the taste, but because he was a part of the discussion around treatment for his anxiety, he took it anyways.

Within a week, he was SO MUCH BETTER!!  He was sleeping well with the melatonin and his colour was back, his food issues were slowly disappearing, and he was feeling less afraid about his breathing and swallowing and dying in general.  Within three weeks, he was 75% better.

The pedi, when we saw her a month or so after starting iron supplements, did a thorough exam of him, took his weight and height, and asked at length about his thoughts, feelings, activity level, general personality, family history, social history, and family background regarding mental illness.  She sent him for blood tests but said that our description of his symptoms (including all the nail biting: pica!) AND the fact that iron supplements helped is diagnostic enough.  Likely lab results would show normal iron levels now that he was supplemented, but she would check anyways.  She diagnosed him as having a tendency towards anxiety, compounded by iron deficiency, and recommended continuing with iron supplementation, trying to increase iron in his diet, and the mental health workbook for kids, Taming The Worry Dragons.  We scheduled follow up appointments.

A few months later and he is so much better.  Once fall hit, I added omega fish oils and vitamin D to his supplement list and explained why.  Since his food issues were better, he was more receptive to the fish oil than he had been before.  We went back to the pedi for our final follow up in December, and he had gained three pounds and grew a whole inch in just two months.  Likely because his nutrition is better now that he feels comfortable eating normally and isn't constantly afraid of bad or moldy food, throwing up, or dying.  Poor kid.  When he read Taming the Worry Dragons, he was so excited to see an accurate description of what he was going through, and to have his worries validated.  I was so happy we were able to recognize his problem, sort out a possible solution, find him resources, and get him help.  I'm so glad we live NOW and not several generations ago, before this kind of problem was recognized and treatment available.  I'm so glad we live in a generation that considers mental illness to be real and solvable, and that we live in a country where treatment and resources are available free of charge to all.  I mean, they are limited and severely stigmatized, but we're moving in the right direction.  I feel like my kid has better access and resources than I had, and for that I'm very grateful.  We also have the best pediatrician in the COUNTRY, I swear it, she's amazing and I want to take her home in my suitcase so I can have her on hand whenever I need her.  =)

Ayden feels good.  His energy is back.  He still takes melatonin to sleep, and no longer sleeps from 7:30 but more like 9:00 or 9:30, which matches his sleeping patterns since he was a baby.  I think the 7:30 was a combination of months of sleep deprivation, and low iron meaning low energy.  And actually all those breathing problems match iron deficiency too, since it can make people short of breath and give them a rapid heart rate and dizziness.  All of which he had, and translated into "breathing and swallowing problems."

We feel good.  We can feed him, send him to school, snuggle him into his bed, and all is well.  He can fall asleep on his own and feel good, safe, loved, and healthy.  He can also advocate for himself: things like the Terry Fox drive or Remembrance Day assemblies are triggers for him, and sometimes he has told his teacher "I have anxiety and this is making it worse, can I leave?"  Perfect self advocacy.  I'm so proud of him.  And it's really neat to see him diagnosed and treated without being aware of ANY stigma; he just accepts it as a medical condition as legit as any other, and accepts his treatment and gets the help he needs when he needs it.  Hopefully by the time he grows up, there will be hardly any stigma left.  He's brave and sweet and lovely. And normal.  



Caryn Ouwehand said...

Ugh, Melissa, I feel like I am reliving my childhood reading this. Really. Like exactly. My anxiety started at 11 years old EXACTLY like this... surrounding food, fear or vomiting after a sibling of mine became gravely ill from food poisoning on a holiday... the similarities between Ayden's story and mine made my hair stand up. I am so happy to hear that the interventions have helped him so much. I so wish that in the early 90's childhood anxiety was acknowledged more, I likely could have been helped a lot sooner than I was.

Sweet Ayden, my heart breaks that he had to go down that path, but I am so glad he is learning coping strategies at such a young age.

Thanks for sharing this.

lori said...

I just love that you are listening to Ayden. Deeply listening. What a missing piece of general public parenthood, it seems. Laying with him at night, calming him in all the ways you can, being proactive about every conceivable contributing factor: food, deficiencies, activities, triggers...I mean, really. Way to go, Mother Melissa. (like Mother Theresa, but specific to your kids, which believe me, they will remember)

I too wish these things were known when I was his age. That's almost exactly when my anxiety started in heavily, just like Caryn. Weird, ain't it?

Louise Chapman said...

Wow, what a journey. So glad that Ayden is feeling a lot better and that you have the best Pediatric dr!! I worry about Kai because he has also missed so many activities due to feeling like he's going to vomit but he says he's not nervous so maybe it is a digestive issue? That's what the dr said are always such an awesome resource.

tamie marie said...

I second everything that Lori said. I learn so so so so so so so so so so so so so much by reading about the way you parent your kids. How profoundly present you are to them. Holy cow. It's freaking amazing. I learn how to take care of myself by seeing how you take care of Ayden. I think you're mothering more people than you think you're mothering.

Thank you for taking the time to write up this whole journey. Ayden is incredibly blessed to have the parents he has.

melissa v. said...

Wow, Caryn that made MY hair stand on end too! I had no idea. It is surprising to me how often a personal experience will resonate deeply with others, you know? We have so many shared experiences.

I'm sorry for myself, Caryn, Lori, and Tamie (and others!) who experienced some degree of mental illness in childhood or teenage years and it went untreated or under recognized. It is too bad that is the way things were. I think it was just becoming evident that adults sometimes struggled with the mental illnesses that can allow a person to be high functioning yet still ill. Like anxiety, depression, and etc. Even your bipolar, OCD, etc, were considered adult illnesses. Children went largely undiagnosed because it wasn't considered a condition children could HAVE, largely.

I'm very glad that is no longer the case. I'm so glad I had knowledge and resources from my own experience to draw from to help Ayden. And I'm grateful you guys think we responded well, because from my perspective I made a lot of mistakes, and was kind of blind for a few months of it til we figured out what was wrong. And although most nights I was present and kind, sometimes I wasn't. More than once I was too exhausted to pour into him late at night after finally getting everyone else to sleep and plopping on the couch to do something very, very introverted for an hour before falling asleep. And I would just snap at him to go to bed. So I was far from perfect and immediately present 100% of the time. But hopefully a majority of the time, he felt cared for because i managed to pull it out of myself most nights.

And Tamie? Thank you. Just that.

melissa v. said...

Louise: it might be worth a second opinion WRT Kai's stomach? Even if it is solely physical, perhaps he has a food sensitivity or something that you could improve with an elimination diet or something. You could take him to a naturopath for testing, they are better with digestive issues than your regular doc, from what I hear...

Tonya said...

You really are a wonderful mother. Doing a great job!!! We have friends whose young son never ever slept. They had horrible nights with him all the time. He was constantly whiny too. After numerous natural practitioner and dr appts, they finally diagnosed him with ... LOW IRON. Bizarre. Oh, and Floradix - took it during pregnancy. Best iron supplement around (doesn't give you constipation!). Glad Ayden is feeling so much better. Glad he has such a great mommy!