Melatonin

This is mainly written as a resource for parents in New Zealand looking to start Melatonin in their child.

Our super brainy oncologist Paed (honestly, I'm not sure how we got blessed with him, but sometimes prayers get answered) often uses a drug called Nausicalm (Cyclizin HCl) in his cancer patients to stop vomiting nausea, however, it can also be given to children ages 6 to 12 in 1/2 tablet doses as a sedative. However, sedation with this is generally restricted to acute cases of distress, or, when the shit hits the fan and your paed is away. This is what the GP prescribed. I found it generally only effective on an empty stomach and that the full adult dose was needed (50mg) to stop the intensity of night time anguish.

It was suggested we look into getting Melatonin for Soph as it is a synthetic version of a naturally occurring hormone in the brain. It's something you can easily buy in the US for under $10 a bottle.

However, in NZ, it is restricted. You need to get a script. I'm not sure if it must come from a specialist, but my pharmacist said that most GPs would be equipped to write the script, so I assume it is not specialist only.

30 tablets cost $18.90 for 1mg. However, most people need more than 1mg, with children reaching accumulated doses of 10 to 12mg per night. So, if you can get the script from a hospital physician, this will reduce the cost as you do not pay for the Rx.

I'm unsure whether you can ask for repeats in the script so you do not have to go back to your doctor monthly.

On the first night, 1mg made Soph super drowsy for about 3 hours before she fell asleep. Last night she was up until 10:30pm, as it had no effect.

You can see this becomes a rather expensive venture when one considers that a dose of 5mg a night will last 6 days. You would be spending $56.70 a fortnight to sustain that dose.

My script tells me to increase dose to 2mg in one week should the initial dose fail to sustain a sedative effect.

I suppose one might apply for a child disability payment for the medicine as it is not covered by Pharmac and most likely will not be refunded from Southern Cross.

You can also try www.cherryvite.co.nz for a natural occurring source of melatonin, the tart cherry. Grown and made in the South Island, you pump 3 squirts of the cherry vite into a glass and take it at night. I have not had much success with getting Soph to take it, however, it might be worth a try for those trying a lower doses tablet and want to avoid the extra expensive of doubling or tripling a dose of tablet melatonin.

You can also get capsules if your child can swallow gel caps. However, it too is not cheap and it seems almost irresponsible for the govt to not provide children with autism or ADD/ADHD disorders with a relatively side effect free drug in favour of supplementing chemical drugs they've bought cheaply in bulk.

Parenting Eeyore

A long time before I wanted to have children, I dreamed up the most perfect nursery you could imagine. It was going to be in the inside of Pooh Bear's house. I was going to project life-sized images of Pooh Bear's humble abode into the room and get an art student to paint it all. It would be as though you walked out of your house and into the mind of AA Milne.

I bought old replica print copies of Milne's original drawings, treasured and revered. I touched the cover lightly most nights when trying to become pregnant (and trying to remain sane).



I was a Pooh Bear girl. I carried a larger yellow bear with me on holiday in Rarotonga and he came to many dr appointments, tucked into the back of the car, awaiting whatever medical disaster that was about to manifest. I had grown up on a serious diet of yellow bears. I did not consider him dumb, as many people often refer to him as, but that of a wise, mountain bound sage. Growing up, I had a wonderful Pooh Bear night light that played the Winnie the Pooh song. You twisted the honey pot to release the chimes. I had a Pooh Bear print pillow strapped to my bottom as I learned to roller skate and broke my tail bone.

While Tigger grew massively popular in the 90s, I remained true to my honey obsessed inner talisman. I was and am my own version of Pooh Bear.

However, I married my own version of Rabbit. And Rabbit didn't believe in setting up a nursery, too worried about the cost and whether it would impact the home's value. Over time I had accumulated various Pooh Bear toys, an entire set of characters in a garden theme released by the Shell station years before.

I made do with what I could, being on a tight budget. However, I knew my child was going to be a Pooh Bear, possibly a Piglet or a Tigger.


I hadn't expected Eeyore.



When she was a few weeks old, I would place her in the bouncer with the dangly toys hanging to encourage her to whack and kick them. My brilliant child had amazing hand eye coordination for someone who didn't sleep. At all. Ever.

I propped toys on the top of the dangly toy bar so they would look down and and her and she'd be surrounded by smiling faces, as my own was often covered in tears.

The one she took the most like to was Eeyore. She would smile to him and coo to him. I remarked that my child was an Eeyore, bound to grow up into a dark grey legacy of pessimism and stoicism. My supportive mother-in-law suggested it was because he had big, alert eyes. But I knew. I ruled my life by the wisdom of the Bear, how could I turn my back on the wisdom my daughter was displaying.



And she has always been an Eeyore. Contrary, tart, bitter for her age, afraid of emotion and easily embarrassed by them. She would accept life better if she were a robot, by her own admission, free of emotions and cares.

She carried that Eeyore around for quite a while until she developed her Barbie obsession. Once Eeyore went into the dryer and his mane frayed, she lost interest in him as he was now a bit more mad scientist than sad loner.

Recently we found the tropical holiday sharing Pooh Bear. When we moved from our large, warm designer home into the cold, barren and (I shall refrain from calling it a dump) certainly smaller home, a lot of our goods went into the garage, to be lost for years. Pooh Bear has now been brought into our active lives. He's had a bath, hung by his legs to dry, cooked many dinners and said many good nights, but the girl remains staunchly an Eeyore.



It's been a difficult week for us. In the morning she wakes, often happy and chattering away, but comes down the stairs to revert into an angry, contrary and anxious child. She screams and yells. Both parents desperately try to reign in any impulse to yell and scream. Both give encouragement to one another to push it down, take a breath and re-emerge patient, kindly, loving.

It is the way I wish I had been parented. The urge to smack, yell and kick are growing inside. It is all I know. This is a foreign territory. I have parented as a gentle, kindly, loving parent for so long, much to the amusement of parents who find gentle parenting a fallacy.

Biblical verses about rods and time-outs and how hitting did no one any harm get thrown my way daily. I find it irritating as I don't begin to preach to you about your downfalls as a human being, but it's fine to 'correct' me as you see fit. That's ok, you're going to die a horrid death in my next novel. ;)

I believe you can parent gently. I believe you can parent with an open heart. But I also realise you will, like I did this morning, hit a huge wall. There comes a point where you love your child but you don't like her right this second. When time-outs don't work as you don't have all the time in the world to address every issue.

When parenting a child with Autism doesn't work with your parenting style, or any parenting style really.



I shut down this morning. I just couldn't do it. My body hurt and it hurt to physically push myself down the stairs. And the child who had been happily chatting away to Pooh Bear and I was now a sulky, dark, angry child who refused eye contact and yelled.

I let my husband down. I just walked back to bed and covered my head. I was physically unable to do it. Emotionally broken. I tried to cry, to yell and scream but I was suddenly hoarse, unable to speak. I opened my mouth, pushed with all my might and nothing. I was robbed of motivation. I could't even force myself to get up to go to the toilet.



Eventually I was able to move. To shed tears of frustration. To realise that living with a child that is completely emotionally out of control is hard. Here we are debating whether to put her on an antidepressant and so many people have opinions. So many voices of dissent. So many 'I could do it better than you's.

Other Autism parents say we need more structure. Structure falls blatantly short when the child is stuck in a cycle of screaming and refusing to allow you in. But, I will try. Our house is a mess. It always has been. It's the coupling of people who don't mind mess with a child who constantly creates mess. I can tidy up only to find she's placed things back where she wants them.

I refuse to change my gentle ways. I refuse to parent opposite to my Attachment soul. But it is hard. All I want is to slap her face, send her to her room and throw away her toys. I feel it burning in my body. I feel my hand stiffen.

But I know what happened to the little girl inside me, battling her own demons. I grew to hate my parents, not trust them and seek ways to escape them. My house was more violent than a single slap every now and then, but one slap leads to the next. One moment of meeting MY need to hurt leads to more moments of choosing MY needs over meeting the needs of the family.

We are a broken family. Broken by anxiety, sleep deprivation and behaviours common to those diagnosed with autism. How is physical violence against one another going to replace, solve or divert any of the above? How is sitting on a stair step or naughty chair for 6 minutes going to change someone who is consumed by anxiety about death, monsters and failing?

Someone who sits in a classroom for hours pretending to be perfect only to come home, to her soft spot and lose her shit?

How does one get into the head of Eeyore and ask him kindly to melt into society? To be nicer to his parents? To accept the help around him?

If AA Milne didn't have an answer, I can't imagine how I'm to find one.

The Boob Update

You'll have to bear with me as I hack this out on one of those neon pink silicon keyboards. The power output to my laptop finally died out and we've had to throw the hard drive into an older laptop with a broken screen. Not the ideal way to operate, but at least we're operating.

So, I saw the breast surgeon who was one of the wankiest doctors I've seen. I rated him as #3 in the rude stakes. Unable to operate his own ultrasound machine, he also yelled at me for covering up before he thought necessary and then spent the last 10 minutes of our 30 minute appointment online googling for a drug contraindication I told him about when he suggested I take evening primrose oil for the breast pain

He was also 1 hour and 20 minutes late to the appointment with no apologies.

Evening Primrose Oil is somewhat effective in combating cyclical breast pain, however it has reportedly had no effect in non-cyclical breast pain. It is also contraindicated with one of the drugs I take.

And for this privilege, he charged us $175. I wish there was a rebuttal process for when you see a doctor who provides you with nothing and verbally assaults you.

Basically he said that there was nothing pathological in the boob (which we knew from the ultrasound the previous week) and said that I was a rare oddity in that I only have 2 milk ducts in my left boob.

When I spoke with my MIL about this it occurred to me that my daughter never settled on the right boob and preferred the left, probably because it had a slower flow and the right would have been so different in milk flow and quantity.

So, I really do feel like a superwoman having breastfed, mostly 1 sided, for 21 months from a boob with only 2 milk ducts.

What we learned, other than you should always listen to that predictive voice inside, is that there is nothing structurally wrong with the breast, no filled ducts, no lump, bumps or bruises, nothing wrong at all. Just pain. His sage advice was: Suck it up and deal.

Yes, because you're just a silly, silly woman complaining about some pain. Suck it up and deal. Can you imagine a doctor stating that to a president or prime minister? No, of course not. But because you're just a woman, well, suck it up and deal.

Would you pay for someone to tell you that? To your face? Me either, and yet I have to. Because he's a doctor and I was given a 'service'. I don't agree with the outcome of the service, but I will pay it. And tell everyone I know not to go to him.

Aside from the breast issue, anxiety is at an all time high here. Soph hasn't been sleeping much which has such an impact on her moods. She was prescribed a sedative, basically an anti-nausea med, but it really was helping. However, it was only helping at the adult dose, no where near as effective at the 6 year old dose. So, we only got a couple nights of sleep into her.

Last night she was acting very quiet, unable to make eye contact and lying face down on the floor, her really autistic behaviours. I tried to guess what had happened and hit upon something with her teacher.

I made quite a few jokes of the outlandish nature, like her teacher had decided teddy bears were evil and was creating a petition to outlaw teddies in NZ. That sort of just seriously random and outlandish statements to unarm her. She laughed quite a lot and in the end said that she was really scared to tell me what happened in case I was mad at her.

I asked if it involve Hamish, a really bad kid at school who she had a run-in with earlier this year. She said no, I could breathe again.

She said that she was trying to log in on the computer and she got her login wrong. Instead of SP2869 or whatever, she only typed in SP2 and her password. The computer was locking up after 3 attempts and the teacher came over to help. Some sort of disciplinary verbal exchange took place in which the teacher corrected Soph and Soph yelled at her and rolled her eyes.

Now, this sort of thing always happens at home. We call it the sassiness and we are working on correcting and replacing the behaviour, but in a child who is tired, not eating, anxious to begin with, it's hard to contain. I believe Soph was told it wasn't ok to yell at the teacher and roll her eyes and Soph felt truly awful about it.

She told me it was repeating in her head over and over and it just wouldn't stop. I tried to explain some things I've been taught to overcome ruminating thoughts, but of course, she didn't want any of it.

I made her write an apology card to her teacher and I hope the teacher sees this child is actually struggling and won't keep repeating the oft quoted, there's nothing wrong with this child; she's an angel.

We've had a referral to the child, youth, adolescent mental health care team (CAMS) and they're posting off a letter. We will likely receive it next week and I ring in to book. I don't know why it has to be this way, but it does.

Hopefully they'll be able to help us medicate this anxiety and get her into some sort of child therapy for her anxiety issues because anything I suggest to her gets shot down.

She's at a playdate today so I'm getting lots of doing nothing done. I've tidied up some recyclables that needed to be washed and sorted. Going through some old kids clothes to get onto an auction site. Some extra cash for xmas would be lovely.

Spring is here and so is the pollen. The pollen aggravates my sinuses and my myalgia is quite bad in my calves and arms. I'm just not sleeping well at all and I spend the entire day exhausted.

Thinking of investing in some herbs to trial.

Currently taking magnesium, calcium and spirulina for energy. It's better than it has been, but I'm not superwoman and that annoys me I hate life taking a back seat to fatigue and exhaustion.

Catching Up

I need to find the time in my life to write.

So much has been happening and there are so many emotions surrounding it.

I saw the Rheum registrar, a young Indian man, who seemed very nervous and slightly with the deer-in-headlights appearance. It's the one part of my illness I absolutely hate. I just simply can't relate to people who treat you without that essential human connection. I guess if I came across someone who was really extraordinary and something I've always wanted to see in real life, I'd be excited too, but, as a patient, it sucks.

Basically, I've been denied my requests for funding for Anakinra. And they want to take away my diagnosis. That really unsettled me for a few weeks. I started having nightmares again. I simply am running out of options and it makes me feel I need to find another Rheum. Someone who will take these dead ends and DO something. Be proactive. I can't live my life waiting for someone to have the time for me. I've already done that in my personal life with poor results.

Miss S saw the Paed Rheum who IS proactive and has some pretty big friends at London's Children's Hospital where they will do her genetic testing. However, she has some FIRSTS that have to happen. 1) We have to have blood test proof of an elevated inflammation marker, something we have NEVER been able to document in me, save for the gallbladder thing.

We also have to do some testing on Soph, though, at this stage, we're not sure what it will be. It might just be xrays but it could involve explorative surgery. No mother looks forwards to that decision.

School has been a major source of anxiety for us all, to the point of insomnia. Lots to talk about there. The bottom line is the teacher is unhappy with Sophie having time out 2 or 3 times a day for a rest, for her ongoing fatigue. I don't want this to become a permanent source of anxiety for us. She is showing ongoing fatigue signs, she's not coping with the heat and it should be a simple solution.

Instead, it's become a 'We just pulled our kid out of school because of 1 teacher'.

I attempted a 7 day Colchicine trial, suggested by the Registrar as part of proving my 'need' for funded drugs. I made it 5 days and can't do more. Everything burns. It hurts to move. The nausea and stomach symptoms are horrendous. I felt like crawling into a hole and being left for dead earlier today.

Summer has come and gone. It makes me melancholic to see Autumn arriving. It makes me sad it's March. It makes me sad it will be 4 years in 9 days.

Soph has been home for 2 weeks and that's 2 weeks I haven't been going in for my voluntary role. That leaves me with tremendous guilt, given we've just had mega need there due to the displacement of Canterbury residents following the earthquake in Christchurch.

I feel like I'm holding things together with some sort of dissolving threading. It's going to give at some point.

To get me through, I've been taking about 6 kids vitamins every day. It does seem to be providing wonders of energy and health. I remember it was my tonic when Spph was born and we weren't sleeping.

I've been thinking of adding Water kefir to my list of crazy things to try and get well. Must try to find some in nz to get started.

My head is just killing me but I can't lie down because of the colchicine induced nausea.