She Loves Her Laser! (NKH)

alice_charlotte

So I’ve had my laser for about 2 weeks now and I guess it’s time to post a progress report to anyone new or thinking of trying it. Forgive me if it’s long winded but my daughter has a very rare condition, NKH and has a lot of weird and crazy aspects to her health and behaviours as a result of it. Lycine encephalopathy, also called non ketotic hyperglycinemia (NKH) but everyone mixes it up with non ketotic hypoglycemia which is basically diabetes. NKH is a terminal metabolic disorder where you can’t break down the amino acid glycine. There are about 500 to 1000 surviving cases worldwide but almost all are under 5. Me and Dorrie are incredibly lucky to have less affected kids with NKH but they are still very delayed, physically and mentally disabled, lots of medical issues and huge behavioral challenges.

Alice is 5 and although mentally about age 3, things like her fine and gross motor skill are probably even further behind. She can walk around the house and at school but uses a wheelchair for most things, she has lots of words but is difficult to understand, is 50/50 toilet trained (poos being abut 90% hit rate but wees not so much). Our big issues are actually psychological. Extreme anxiety, constant tantrums and screaming, raging OCD, aggression, self harm, hitting and biting of others, irrational freak outs and hissy fits over everything and nothing etc etc. She is also a terrible sleeper, waking several times a night and only sleeps through if sedated (it is a part of her condition so not unexpected) but can also wake with night terrors, tantrums, screaming fits and so on.

We only finished the protocol today as despite doing it daily I spent the first few days on just Prep and 1 to 10 to prepare her. I also went over Moro and FPR a few times before moving on as her fight or flight and anxiety was our biggest issue.

So what are my findings?
1/ She loves her laser! Someone on here called it a “Princess Laser” so I stole that idea and my god does it work. She asks for her Princess Laser daily and actually cries when we have to stop. She doesn’t sit still for it but she’s getting better.
2/ Biggest change would have to be mood. Her affection has skyrocketed as has her ability not to melt down. Falling over is now punctuated with “Ouch, I fell down” rather than an hour tantrum and she will finally accept a kiss or a hug to make it better. Stuff still upsets her but to a more “normal” level. Her mood in general is SO much happier and I’ve noticed lots of silly/fun behaviour rather than looking like she’s waiting for her opportunity to kill me!
3/ Verbally. Wow this has just gone nuts. So far no improvement in pronunciation but more words being used and putting more together. More use of “I” and “me” and “he” and “she” rather than talking of herself in a third person ie “Alice share Mummy” is now “I share with Mummy” and Alice did it” is now “it was me”.
4/Sleep. Not sure on this one. I think things are changing. She’s going off better than she used to but still waking a lot. She’s onlalice_charlotte3y slept through once in her live without sedation so it would be an effing miracle if we cracked this already but she is waking happier and less screaming on waking.
5/ Toilet training no change yet.
6/Gross and fine motor no change yet but she is asking to be carried less so I suspect although I can’t see a change she is feeling more stable.

Anyway so far it’s already been worth every cent and I cannot express enough how much we needed this. We were in a real mess, all drugs had failed (thankfully with hindsight) and with this and introducing CBD oil a few months back I am finally really and truly enjoying being with my daughter. Actually I forgot to add that she looks different! Its hard to explain but kids with my daughter’s condition can look a bit vacant or kinda gormless (god that sounds awful but I hope you
understand what I mean). Since the laser she just looks more “in there” like she more switched on and brighter.

Update:  November 25, 2016
This is thalice_charlotte5e Alice I adore. We have her back and better than ever. This is the girl fighting to be herself and when we get it right with treatments and medicines (or lack of), she is so damn awesome. Less meds than in her entire life, cannabis oil and daily home therapies using a cold light laser and a technique called Reflex Integration. Thanks Vanessa Hay for all her care and taking her to all these great places and thanks Bonnie Brandes for helping me learn the therapies. If we can keep this up she will rule the world.

Update:  December 5, 2016

Alice continues to make great progress. It’s hard to fully explain how different she is. Not so much in skill yet but in behaviour mood and happiness. Its not an understatement to say its been “life changing.”

All our kids have different conditions but I am a firm believer that they are all “in there” somewhere, no matter how disabled. I’m so pleased you are finding your son. My daughter is about 6 weeks in and my god I love her. To be honest I wasn’t that keen on her before!!! I have the scars to prove it, quite literally. So happy for you, a head on your shoulder is priceless isnt it?

Update: December 6, 2016

Evalice_charlotte4erything happens for a reason. Its all a big patchwork really and seeing what it has done for me and Dorrie’s son just makes me so hopeful for others, NKH has virtually no treatment options. The severe don’t make it out of toddlerhood and the mild often end up in homes due to aggression and self harm. Right now I have a very happy, funny, playful, sweet. loving child with a disability. A few months back I had a screaming, tantruming, self harming, vicious biting, scratching and angry child who clearly hated being her. I really hope this is a break for NKH parents. God knows we need it.

Update: December 7, 2016

Thought I’d share a more few great things I’ve seen since laser. Now I fully appreciate some would have happened any way and I also feel a lot of the reason we are developing faster is because we are no longer constantly melting down or screaming and tantruming. However without the laser the endless meltdowns and aggression and OCD etc would not have stopped so either way, the laser is at the core of this.
1/ Alice put on her first item on clothing 100% unassisted. A pair of shorts.
2/ She said her longest sentence yet “Look Mummy Christmas lights, I show you. Santa. Not yet”
3/ Instead of trying to kill and maim me she says I’m “her Honey” that she loves me “one hundred million and sixty eight” , that I’m “a good Mummy” that I’m “a princess” and that she “misses me so much”. Now we have had bits like this in the past but only when shes having a good day and not all at once. I know get this all day.
4/ She walks around counting to 15. Again she used to do this but I haven’t heard it in over a year.

This is all on top of the HUGE improvements in mood and behaviour. Interested though has anyone had detox symptoms in the form of an upset tummy? We seem to be getting a lot of big “evacuations” for want of a better word!

Update: December 19, 2016

I’m 1000% happy with my laser. Life changing beyond my wildest expectations. My daughter is not DS but CP, GDD, ADHD, OCD, Self harm, aggression, anxiety and so much more. Three months ago she was satan and foster care was even on the table. Today I cannot put her down, I love love love her so much and if her condition doesn’t end her life early it will be my relentless kissing.

All our kids have different conditions but I am a firm believer that they are all “in there” somewhere, no matter how disabled. I’m so pleased you are finding Eric. My daughter is about 6 weeks in and my god I love her. To be honest I wasn’t that keen on her before!!! I have the scars to prove it, quite literally. So happy for you, a head on your shoulder is priceless isnt it?

Everything happens for a reason. Its all a big patchwork really and seeing what it has done for me and Dorrie’s son just make me so helpful for others, NKH has virtually no treatment options. The severe don’t make it out of toddlerhood and the mild often end up in homes due to aggression and self harm. Right now I have a very happy, funny, playful, sweet. loving child with a disability. A few months back I had a screaming, tantruming, self harming, vicious biting, scratching and angry child who clearly hated being her. I really hope this is a break for NKH parents. God knows we need it.

Update: December 27, 2016

Leaving the house before laser:

“Nooo Mummy no go, no go NO GO!!! Cuddle, cuddle, cuddle, no doctors, sing twinkle, no doctors, i so sorry, i so sorry, Mummy sing twinkle, no go, no go!!!!!….”

Leaving the house after laser:

Bye Mummy.

By |2017-11-24T18:17:42+00:00June 17th, 2017|Best posts|0 Comments

Leave A Comment

This site uses Akismet to reduce spam. Learn how your comment data is processed.