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Update 2021. All things Alice.

Updated: Jul 1, 2021

Its a little while since I did a big update on my girl, so forgive me if I repeat myself or appear to mention things I hadn't previously explained.

If I go back a bit it might help explain where we are and how we got here.

Very, very long story not very short, but birth to age two was nothing other than palliative care and keeping Alice alive and out of hospital. It certainly wasn't fun but it was what it was and best of all Alice was happy most of the time. Any milestones or gains were a bonus but hand on heart the best bit was that she just grinned a lot and if anything appeared to be a bit high and stoned a lot of the time. A happy stoned, grinning baby is no bad thing, palliative care or not.

By age 2 the survival concerns weren't as imminent but Alice was no longer very happy and this was the start of the worst 5 years of our lives. Yes I know all the Facebook posts look pretty happy and portray a fun smiley family sticking its fingers up to death and disability, but to use the title from another blog post, it was all Facebook Smoke and Mirrors. Alice never slept and I mean never. She screamed almost all day, every day. She learnt to self harm, to hit, bite, scratch and slap others and that's before we even get to the relentless gastric issues, random movements, violent twitches and jerks that plagued her life. I wont go into it all as I'm sure I've covered this a lot already but it was about as much fun as a colonoscopy without sedation. Incidentally I have only ever had a colonoscopy with sedation, and that's not something I plan on repeating.

At age 5 to 7 we made some breakthroughs with things like, laser therapy, a very restricted diet, homeopathy etc but we also had a particularly shitty time trialing traditional meds that did everything from inducing psychosis to rendering her incontinent after being toilet trained for two years.

At age 7 we were at breaking point. Actually that's a lie, we were there long before that but this time it was worse than we could ever of thought. We took our Make a Wish road trip and if you look at all the pictures on Facebook, we apparently had a blast. If you actually attended the trip you would of driven the camper van off a cliff into Shark Bay by about day two. The only "Wish" I made on that trip was that Id had my tubes tied after my first child. Yeah, yeah yeah, judge me all you want.

On returning home I did what I do best and that's research the shit out of any ambiguous connection I can think of to NKH/violent behavior/self harm/OCD/Parkinsons type tremors etc. The Nemecheck Protocol came up again, as it had a few years previously, but this time I took it seriously. With that on board and a second attempt at trialing Alice on Prozac, we finally found some balance. Not what a normal family would describe as balance but what an NKH Family see as a massive win.

Nemecheck solved a lot of her apparently untreatable stomach pain issues, which in turn helped her mood. It also improved her speech and cognition vastly so she found it easier to express herself and the Prozac lowered her anxiety so she didn't loose her shit if anyone other than her parents so much as looked at her. During this time I found the nerve to change her schools to one with higher functioning kids. You'd assume that Alices level of physical and mental issues required a school that deals with extreme disabilities, but in truth its the higher functioning kids that have the worst behavior and it was apparent she needed to be with experts in behaviour, not experts in disability. These three things bought us about two and half good years.

Then late 2020 things slowly started to unravel. This is not abnormal in NKH at all. In fact something working for over two years is a bloody miracle. No one really knows why but because NKH is a metabolic disorder it affects how these kids use up/break down (metabolise) anything and as such a lot of things do the opposite to what they should, or only work for short periods of time. Over and over again the parents of NKH kids will swap names of things that either "brought them some time" or "gave us a few good months". Nothing lasts in NKH, nothing. Symptoms come and go. New things arise and old issues can just stop out of the blue. Meds work, then make matters worse. Kids doing well, suddenly decline and die and others can quite literally be read their Last Rites by a Priest and pull through to be some of the highest functioning kids with NKH that we know of. In the land of NKH its like no rules apply and everyday is Opposites Day.

The issues that were re-emerging were that her anxiety and OCD were creeping back in, we were also seeing occasional arm biting again (a near 10 year old with no concept of pain when raging can REALLY bite into her arms), her ADHD had ramped right up to levels we thought were impossible. She couldn't eat a meal without having to stop and dance or run a circuit of the room. She could only watch TV if she stood and jumped on her feet or bounced her bum on the edge of a sofa.

School staff were doing their utmost to keep her and her classmates safe from her rages and they were managing her as best they could but in truth it was a Shit Show for anyone involved in her care. It was common for her to be removed from the class daily, to have to do her work away from everyone else or for me to be told she'd spent the day climbing on tables and over turning chairs. We stopped going swimming and horse riding with the school as she'd hit the bus driver or wouldn't stop swearing at teachers and refused to sit down. This is a tiny skinny 9 year old who weighs just 23kg.

Her Parkinsons type fits and tremors suddenly came back with a vengeance. They were so bad that if she woke in the night to one of these episode,s she couldn't even swallow her own saliva, let alone sit up or speak. And then just when you think you cant get any luckier in the genetic lottery for your kids, we welcomed what appeared to be Tourettes into the family. Fucking marvelous. Yep that was intentional.

Now I will accept that we are a very sweary family, but half of what she says has not come from us. It seems that Alice has subconsciously stored every swear word mentioned on TV, on the radio, in a traffic jam, every argument we've walked past in the street and every drunken yob we've been with in 100 metres of. So now armed with a full and varied vocabulary of vile insults, Alice let it all pour out in the last six months. Naturally I'm mortified but there has been occasions where she's put words together so well and so appropriate to a situation that I cant help but be slightly pleased her brain is working that well. This is actually a good thing though as we are told Tourettes is rarely in context so we should be safe in the knowledge that it may actually just be 50% nervous tics (which will pass) and 50% her just having a potty mouth and a bad attitude.

OK so now for the new stuff. Not wishing to repeat the previous disasters with ADHD meds, Alices amazing pediatrician suggested we attempt a different approach and try an antidepressant that makes you sleepy at night and lowers aggression and anxiety in the day. Plus of course it has the added bonus of helping lift mood. Now Alice is not technically depressed, in fact if anything she's manically happy when not in a murderous rage. But for those who don't know, glycine is essential for the production of serotonin. So if you cant utilize the glycine in your body, you cant make a whole heap of other things we need for normal brain chemistry. As such treating with Prozac has been a big success because that boosts serotonin levels.

Five weeks ago we began lowering her Prozac and four weeks ago we began slowly introducing Mitarzapine. The goal being to wean Prozac completely and replace with the new drug.

Quick bit of info on Mitarzapine. It is similar to Prozac but does have some differences. Its often given to the elderly and those with dementia and interestingly, to men in the prison system (oh the irony that my sweet 9 year old is on a drug used to calm those with dementia and violent criminal tendencies). The reasons these groups do so well on it is firstly it knocks you out at night. Secondly it lowers aggression and makes you feel calm in the day. Finally (and this is why its not a hugely popular drug) it increases appetite and helps you gain weight. This of course is often a bonus for the elderly and it will also be helpful to Alice. Almost all NKH kids who are mobile are underweight. Not because they don't eat but because they cant stop moving. They are never still and even when asleep, they twitch, jerk and kind of squirm like there is electricity running under their skin. Its like their muscles cannot stop contracting. Add that to the mind bending ADHD and its not only exhausting for them but they burn through adult levels of calories.

Week One: Prozac lowered to half her old dose. No change.

Week Two: Introduced Mitarzapine at a small introductory dose along side reduced Prozac.

We started on a Friday evening and the very first night she slept like a log. It was like a genuine miracle, complete with white light and a chorus of Angel song descending on our house at 8pm. Of course I spent the whole night assuming she had died, but she bloody slept.

Next morning she woke up, immediately spat in my face, told me to "Fuck you Mummy" and trashed her room. The rest of the day was just as much fun.

Sunday was marginally better but we were already debating throwing the towel in at this point.

Monday morning was horrific, spitting, swearing, slamming doors and generally being the spawn that Satan would be proud of. I dropped her to school in tears (both of us) and went home to stuff my face with carbs and drink far too much coffee.

At 2.30pm I picked her up from school with my apologies for her vile behavior all ready to go, only to be told she had shown the best behaviour they'd seen in months and had had an uncharacteristically great day.

The rest of the week was the same. Sleeping at night, vile on waking, great at school.

Week Three: Mitarzapine at same dose, Prozac every other day.

Much the same as last week but notable changes were no longer falling asleep after school, presumably because she was sleeping so well at night, big jumps in use of full sentences and asking more complex questions ie "What did you do after Mummy drop Alice at school"? and "What time we pick Daddy up from train station"?. Mornings are still tough as are evenings before her evening dose. We are now assuming that due to its sedative affects, shes either waking with headaches or shes just groggy, but its coming out as aggression and anger. Greg is having to start work late to get her ready for school as she's too big for me to control.

On the plus side she has been good EVERY SINGLE DAY at school since starting and its even been commented that she is sometimes now better than all of her class mates. Prior to this we would get maybe one "not bad" day a fortnight and one "great" day a month. We have now had two straight weeks of "great" days at school.

Week Four: Mitarzpaine doubled and Prozac ceased.

Shite week at home, another great week at school. Sleep affects seem less with this higher dose, on waking she is nothing short of feral and she's back to self harm and attacking her brother. Highlights of the week include spitting in her Dads face because she didn't want to get dressed for school and slamming her brothers head in the fridge when he was trying to get his packed lunch out. Home is now a war zone both in the mornings and evenings but school say she's transformed and thriving. FFS!

Week Five: Can't get hold of the bloody pediatrician so Im gonna have to wing this myself. We cant go on like we are. Executive decision was made to lower Mitarzapine to the introductory dose and bring Prozac back on board at half her old dose and so far it seems to be working. This week she's sleeping again, yet another incredible week at school, better behavior in the evenings but mornings still bloody hard work. I also had a meeting with her school this week and the feedback was so encouraging. They say she's a different child to the one they were (trying) to teach a month ago.

And that is where we are at. On balance I think we are winning and certainly for now we will continue with the regime. The better sleep means shes brighter in the day because shes finally rested. For the first time in just shy of ten years, when she sleeps she is actually still. Like a normal human! No twitching or jerking, no piano hands or foot twirling, no pulsating skin or flickering eyelids. Shes still, she is actually properly still!

Because she's concentrating at school her knowledge of letters and numbers has jumped, as has her problem solving and even things like she put on her first sock completely unassisted (socks are a bitch if you have fine motor difficulties and a movement disorder). Her undies are now always on the right way round, as are her pants and t shirts. Sometimes she can even get her shoes on and do up the velcro straps.

Her speech is becoming more complicated and best of all she's hardly telling anyone to "fuck you" anymore. Until recently this was her standard greeting to strangers, nope Im not kidding, it really was. Now we get a lot more "Hellos" and requests for 'elbow bumps' (because High Fives are so 2019).

On the down side we are yet to have a good morning before school, so for the time being Greg continues to have to be on hand to carry her kicking and screaming to the van each morning, all the while she screams "fuck you Mummy" and "stoopid bitch Mummy", which is of course just doing wonders for my mental health. That said 2 minutes into the car journey she's singing to the radio and telling me I have pretty hair and I smell nice. Oh the bi polar life of NKH.

Fingers crossed the god awful mornings get better but right now the pay off is worth it for the sleep, amazing days at school and hilarious conversations with my tornado child.

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Linda Robinson
Linda Robinson
Aug 24, 2021

I love following your post about life with Alice. Your humor and attitude help me to survive. I'm a 67 year old grandmother raising a 9 year old autistic granddaughter. She became a nightmare at 7 out of the blue. Self harming now to the point of having to wear a helmet, arm restraints and leg restraints 24/7. She hits and punches anyone within reach including herself.

I started the Nemechek protocol 2 years ago. No progress. I was able to order rifaximin from India recently but had to stop 3 days in as she broke out in a rash.

How is Alice now? I hope to hear an update soon!

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