Help Support Tiaré
Tiaré & her family need your help!
Following a routine Tonsil & Adenoid removal on the 5th august 2016, a viral infection caused a rare neurological brain disease. It is called acute necrotizing encephalopathy (ANE). ANE is very aggressive and has caused extensive damage to large areas of Tiaré’s brain. We do not know how much is repairable...
The specific type of damage to Tiaré’s brain has only been reported in a couple of hundred cases. She has been sedated for over a week and steroids and IV immunoglobulin were administered to halt this damage. There are a variety of outcomes ranging from death to full recovery.
"She is very sick, but doing an awesome job of trying not to be. Our little sunshine." - Tam (Tiaré's Mother)
Of those who do survive, about half have permanent brain damage due to tissue necrosis, resulting in impairments in walking, speech, and other basic functions. Unfortunately at this point in time Tiaré cannot speak, or use her limbs with purpose. The neurologist said there is still the possibility she could succumb to her medical problems.
Since admittance, Tiaré has been unstable and nearly died on 13th August when she “blew a pupil”. An emergency CT scan found that more damage was still occurring due to internal pressures in her brain. Tiaré's brain was swelling against the skull and had impacted on her optic nerve. Tiaré had to undergo surgery, where the medical team were able to successfully insert a pressure monitor into her brain. It wasn't a therapy to improve her health as such, but gives the medical team a guide for drug treatment when her brain swells.
Tiaré's sedation is slowly being reduced. This has to be managed tightly. Tiaré has been sedated for so long that she will get withdrawals (vomiting, diarrhoea, sweats, increased heart rate) if the sedation is removed too quickly. Her eyes are opening a little. She is teeth grinding a lot when awake so a mouth guard was inserted, as Tiaré is also damaging her mouth/tongue when grinding. Tiaré also managed small toes movements & hand movements. The physiotherapists are using foot braces due to risk of drop foot from hyperextension.
Good things: her heart is in good condition, her lungs are doing well, Tiaré is coughing secretions up for suction and her legs aren't stiffening anymore. Her liver was previously quite damaged and kidneys a little damaged, but now kidneys are normal and liver very close to normal function. Gross anatomy of eye looks normal & optic nerve doesn't appear to be swollen. This is a positive sign for vision. Temperature controlling “cooling pad” is no longer required. Tiaré no longer requires the two cardiovascular drugs, nor insulin, which was used to counteract side effects of drugs. A lot of people have been involved in an effort to get to this point.
"We think she is so brave and she is so very loved. The neurologists have told us if she survives, she is most likely to be severely disabled. We love Tiaré so very much and wish for the best outcome and that she will recover as much brain function as possible. We have a big rehabilitation journey ahead with Tiaré. With kindness from the crowd funding movement, we feel we can do the best to return Tiaré to the fun, energetic, intelligent joker she was. We want Tiaré to live her life to her full potential and get back to enjoying swimming lessons and her ballet scholarship. Thank you to everyone who has shown your love and support." - Tam (Tiaré's Mother)
As you can imagine, the costs for such a tragic occurrence begin to mount quickly, hospital parking, accommodation, care for Tiaré's younger sister while her parents are with her, meals, time off work; and these are just immediate. As Tiaré's outcome is still unclear, possible future costs for rehabilitation cannot yet be measured. The road ahead is going to be tough, whatever the outcome, and we want to help ease some of the financial stress and struggles from this beautiful family so they can focus on being there for gorgeous Tiaré.
If you can help, any amount is greatly appreciated and we Thank You in advance!
We continued Tiaré’s PoNS treatment both alongside and in conjunction with her NAPA therapy. One of the PoNS exercises we do with Tiaré, as instructed by her Russian Neurologist, involves a progression of movements where Tiaré rolls from her back to stomach, leopard crawls, then pushes up onto her hands and brings her legs up to support herself on her knees, then props up on her knees to tall knee walk then steps through to stand and walk. At this point in her rehabilitation, Tiaré requires a lot of support (three adults) to make sure her body is in the correct alignment, so she relearns these movements correctly. We have very gratefully had our friend Nat (Matty’s Mum) helping us out. Nat has been reliable, patient and supportive. We really appreciate the love and support Nat has provided and the juggle that had to happen with her three children, Hubby and Mum for Nat to be able to be apart of T’s home routine. Nat has now stepped into an important full-time job appropriate to her education, so now we are looking for someone to help out for an hour in the evening with Tiaré’s PoNS treatment and therapy. Please get in touch if you are available and want to help Tiaré regain her mobility.
Tiaré also had the privilege of helping Susan Blum teach local therapists her Total Motion Release (TMR) for Tots and Teens ( https://www.wiredondevelopment.com/single-post/2018/11/10/Susan-Blum-TMR-Tots-Teens---A-Foundational-Toolbox-For-Pediatric-Physical-Therapists and www.tmrseminars.com). Susan is very tuned in to children and extremely respectful, informative and empowering towards the children she treats. I suspect this is a big part of the reason why Susan gets great results from children she treats. The benefits of Susan’s TMR for Tiaré was the release of tight bands of muscles and straightening posture. We do Susan’s recommended exercises for Tiaré daily.
Tiaré’s language has also continued to improve in speed and content in conjunction with using the PoNS device. Some of the best examples of Tiaré’s use of language includes:
Alright, let’s do it.
No Ari. Hop down.
Arianna feed me.
Sit in Mummy’s lap. No sleep time. Lap time now. Morning yet?
Cuddle me. Me good. You good.
More tea please, Nat
Mummy robot, Daddy robot show.
I don’t like spider web.
More popcorn in bowl.
Beep, Mummy. Microwave.
Well done, darling.
Lego come back to me.
Mummy. I wish Tee-Tee walk.
Mummy play hide seek now… soon.
Spaceship. Help make spaceship.
I have also managed to get in contact with Caitlyn, from Georgia Tech re: Passive Hepatic Learning using an electronic glove ( https://www.freethink.com/shows/superhuman/season-3/these-gloves-could-offer-rapid-recovery-from-brain-injuries). Unfortunately for Tiaré Caitlyn is only studying stroke survivors at present, but will let me know as her work progresses.
Tiaré had another good week in the Rehaline clinic, in Russia. She continued doing much the same program as the first week. She was more tolerant of using the PoNS device. Most of gains only last for the period of time Tiaré has the PoNS device in her mouth and for a residual period thereafter. When we use PoNS for an extended period of time, i.e. a year, the brain will rewire itself and not required PoNS.
The skills that seems to last longer than the stimulation and residual period were 1. Tiaré’s desire to play with Duplo; using her hands in a coordinated fashion to pull the Duplo apart, and her use of language. 2. Relative increase in language and sentence complexity. Examples of sentence in Tiaré’s second week in Russia and since returning to Australia include:
North Sydney Sukie Lily lives
Daddy love you so much
Hand. Jana hand hold. Piggies
Daddy cuddle. Love you
Mummy. Me help dinner
Please Mummy open handbag.
Mummy, drop hand bag. Pick up
Tired. Morning yet? No night time. Sleep time. Tired.
Before Tiaré finished at the Rehaline clinic in Russia, she had some tests performed by the neurologist, Dr Evgeny Bugorskiy. Dr Bugorskiy noted Tiaré had reduced in her scale of paresis, improvement of Tiare’s ability to sit in supported positions, improved posture and central location of head, improved coordination and fine motor skills in upper limbs, and increased vocabulary.
Since returning to Australia, Tiaré has also managed to count to 20 without prompt with her speech therapist, Tara, and assisted to 30. Tara was impressed with Tiaré’s overall speech gains and commented it was the most impressive gain she has seen, speech-wise, with any intervention she come across in her experience. This is very interesting, as we didn’t specifically work with speech. The speech improvement has been an added bonus. Tiaré’s OTs, physiotherapist and massage therapist also noticed improvements. One of Tiaré’s OTs commented Tiaré is stronger through the shoulders when weight-bearing through her arms, has decreased winging of the scapula, improved dissociation between legs and arms to remain in 4-point kneel, increase fluid movements through arms and decrease movement reducing spasticity. Tiaré’s massage therapist noticed an improvement in the texture of her muscles.
Tiaré has been using the PoNS and SYMPATHOCOR to stimulate her brain. PoNS device is a portable neuromodulation stimulator. PoNS generates an electrical pulse generator that delivers carefully-controlled electrical stimulation to the tongue. SYMPATHOCOR is a portable corrector of activity of the sympathetic nervous system place around the neck and works by generating an electrical pulse.
After first three days of PoNS and SYMPATHOCOR we noticed Tiaré was getting quicker with her vocabulary. Some new phrases she now regularly speaks are "sit in Mummy's/Daddy's lap", "Ari... miss her" (followed by lots of tears), "Lego play", "well done". The most remarkable thing that occurred in the first three days was self-initiated bimanual use of Tiaré's left hand. This is HUGE! For now, Tiaré mainly uses "lefty" bimanually when pulling Duplo apart. She has such a drive for this activity and requests "lego play" many times-a-day. Tiaré has also improved her posture in her wheelchair. This will have a large impact on her quality of life, as it means Tiaré's body has a greater chance of symmetrical development, reduces the strain on her neck and lower back, and strengthens her body providing a solid base to build skills upon.
Since Tiaré's brain was damaged, our once-active-sleeper barely moves in her sleep at all and we frequently find her in the position she falls asleep in and always favours the one side. For the last three nights she has moved 90 degrees to the location she fell asleep in, is laying on the opposite side of her body and can now fall asleep in two or three different positions. The value of this seeming benign ability will be the reduced likelihood of pressure sores. Prior to this, Tiaré had started pressing one of her feet into her mattress during sleep. Even though she sleeps on a pressure mattress, she is developing a mark on one foot that wasn't going away, which we have been managing by moving and putting padding under the area while she sleeps.
From an observational perspective, Tiaré's vision has improved such that she seems to be using her vision to look at things more often. I asked her if she sees better now and she responded with "yes", but we have not been able to quantify exactly what that means.
The medical team at Rehaline have been wonderful to work with. The staff include a neurologist, physiotherapist, kinesiologist, and osteopath. We are so pleased about the gains Tiaré has made this week and are looking forward to seeing her progress over the next week. There are multiple scientific studies published validating the effects of PoNS. Observed therapeutic benefits from using PoNS device include balance, attention, memory, multitasking, vision, fine motor control, sleep, tremor and tinnitus.
Conditions treated include peripheral vestibular, central or idiopathic vestibular loss, cerebellar stroke, Meniere's, Parkinson's, MS and cerebral palsy
For those interested in reading a bit deeper, here is a link to a conference paper: https://www.researchgate.net/publication/282078218_Non-Invasive_Multi-Channel_Neuro-Stimulators_In_Treatment_Of_The_Nervous_System_Disorders?fbclid=IwAR2n3BOGQLsqeoC0_SoKSQh2s5XqwRE02ojpKft38y63KUrnYG93lOE_ya4
Lots of exciting news to update you all with! At the top of the list is Tiaré and Josh have got a booking to use The Portable Neuromodulation Stimulator (PoNS) and therapy in Russia!!! They are heading over in November. PoNS is an investigational, non-invasive, medical device. PoNS Treatment is the first and only tongue-delivered neuromodulation being developed to combine stimulation of cranial nerves with physical and cognitive therapy to restore lost neurological function (from https://heliusmedical.com). We can't wait to see the progress Tiaré makes physically and mentally during this treatment and therapy. Over the next 7 weeks, Tiaré will be doing 6 weeks of intensive therapy, including the two weeks in Russia and her 9th NAPA intensive.
I recently received heart warming news from Tiaré's Speech Therapist, Tara, after one of her sessions. Tara said Tiaré blew her away with how quick her responses were. They did a lot of imaginative play and role play communication. Tara said Tiaré really is super clever. Tara would say a comment that would make Tiaré laugh and she would comment back quickly with another cheeky response. Tara is wonderful speech therapist and she and Tiaré make great progress.
Tiaré and her Physiotherapist, Jess, have been working really hard on walking. Tiaré got an amazing 100 consecutive steps with Jess's assistance. They make a great team, and Jess is good at getting the most out of Tiaré in her sessions. Crawling has proven to be harder than walking for Tiaré due to the issues she has moving her left arm. At home we have been continuing to support Tiaré's progression with daily strength work in standing frame, prone on a wedge to strengthen her shoulder girdle, electrical muscle stimulation (EMS) of her right leg (to improve dissociation from trunk when she steps) and two places on left arm, and daily stretching to maintain range. This takes about 4 hours. Tiaré also uses her walker at least weekly.
Tiaré's right hand is continuing to improve and she is very motivated to use it. Some of her former skills, such as drawing, have yet to return, but she is very busy exploring her environment with her right hand and I would say her in hand manipulation is better than before ANE. Tiaré loves to practice turning the pages of a book. She frequently requests for me to "read book". Her left hand is slowly but surely progressing. Lisa, her OT at NAPA, has started using EMS on her left hand to get some nice flexion in her wrist. A visiting OT from LA, Allyson, also did some great work with EMS in an intensive Tiaré had with her. She had a great imagination and had Tiaré knocking over a monster with lefty to save a piggy! Tiaré also has a OT, Ros, whom comes to our home and also does great work with Tiaré. Ros and Tiaré work on fine motor skills and getting lefty moving.
We would be super keen to try a wearable technology created by Thad Starner ( https://www.freethink.com/shows/superhuman/season-3/these-gloves-could-offer-rapid-recovery-from-brain-injuries) on Tiaré's hand(s). If anyone has a connection to Thad, we'd love to get in contact with him or his students.
Tiaré has been integrating her hands and vision. During a session with Sally (vision therapist), Tiare looked and brought pictures of a sun, rain and cloud close to her face to look at. She could identify the rain, reaching out for the correct picture when presented with two pictures, she wanted to use rain in a story about Mickey, Peppa and baby. She could say rain easily and when she did rain came in the story and she thought it was very funny. This is what she might be doing when she goes to school, identifying what the weather is doing outside. She appeared more than capable identifying with the picture which represented these concepts. Sally also uses a light box, a slinky, lava lamps, books, shaving foam and creative toys she has made herself to help Tiaré improve her vision. We have a room in our home we have put a lot of black backdrops up within which they work. It is lovely to see the progress Sally and Tiaré have made. We also support their progress and encourage Tiaré to use her eyes and create points of visual anchor for Tiaré in our home and car to help her identify her location.
Tiaré finds using her body in hydrotherapy tricky. I suspect it is because the local indoor pool is a very loud place. However last week she started kicking her legs more consistently in the pool.
Thanks so much for your support. We have no expectations on donations, but if you want to donate and avoid 8-9%fees being taken from your donation, we can provide you with Tiaré's bankdetails.
Hugs to your whole family, my daughter was in Westmead last year with ANE, please feel free to contact me at anytime, prayers to Tiare. In New Zealand at the moment there is another little 3 year old girl fighting too. Fate whispers to the warrior " you cannot withstand the storm" and the warrior whispers back "I am the storm".
Her determination and your commitment is inspiring, with some extraordinary milestones and many achievements that may not have been thought possible, along the journey. The road is long but it would seem the rough bit of the ride is moving towards a smooth journey. May the journey that remains to be taken be short and filled with continued success. Love to you all Deb Paul and Amara
Dear Tam and Josh, I have watched your journey over the past months in awe of your strength and determination. I have watched Tiaré prove the experts wrong, with her courage and commitment (no doubt she has you both working hard in side those genes of hers) and have watched the joy of sisters with Arianna playing such an important role in he recovery and being a little girl. You are all so inspiring and positive and each week I look so very forward to hear the progress that is being made. I wish you all a fabulous Xmas together and hope with all my heart 2017 brings speed to Tiaré recovery and we send you love and best wishes for a New Year. Love Deb, Paul and Amara Xx
Hi Josh and Tam, I don't know your family but I just wanted to let you know that I'm still following all your updates. I'm so glad to hear of Tiare's progress from week to week. She is doing so well and it is so wonderful to hear of all her improvements. What an amazing girl. Thanks for the updates. Janette (Laura's colleague).
Bless you little Tiaré. You are such a fighter. Yes, well done getting rid of the NG and not going down the peg path. Our little boy Winston (one of the triplets) tried that out and it wasn't much fun!! If your Mummy or Daddy ever wanted to know about our experience with that (and I'm sure with you it won't be needed), please tell them to call at anytime. We are praying for you little star! xxxx