Sunday, 28 April 2019

Story Alyssa

One of the main reasons we created www.faithforhope.com and www.otcdeficiency.com was to try and create awareness through Alyssa's story, Here is a Video of Alyssa before and after her brain injury, and Parents giving a short verbal account of what happened to Alyssa on the BBC in 2013.



Story Alyssa






Update since the video


Alyssa’s Fundraising campaign in 2013 helped her get the therapy she needed at that time, after a year and a half of fighting MCH, the ombudsman ruled that there had been an injustice to Alyssa when her therapy was reduced, The LA Then agreed Alyssa’s finalised Educational statement which converted into her ECHP in 2017 which says Alyssa needs weekly physio/SALT and OT, the LA have been very supportive of what Alyssa needs.

Alyssa brain damage is a very tangible thing, at the start we had hoped our little girl would fully recover but after many years of hard work from Alyssa, us and Therapists it's clear the damage is going to be life long and sadly impact her significantly needing 2:1 constant 24 hour care for the rest of her life, although the Therapy has been vital in improving her quality of life as she could do Absolutely nothing after her brain injury, we are grateful the therapy has given her the ability to roll in bed so she isn't stuck in one position, being able to transfer instead of being hoisted, she can sit unaided, high knee crawl with help, her reaching and fine motor are continuing to improve, She likes to reach for toys if i hold them, she is beginning to explore immediately around her for toys if i squeak them, she can feed herself with hand over hand support, and drink from a straw, after Alyssa's brain injury she was tube fed, and was not expected to fully eat orally again, and we do not use her tube for food unless she is ill or asleep, she is now smiling and laughing, as well as frowning and sighing, we miss her talking as the rare times she did speak we were told was automatic responses that she had no control off, we are working on non verbal communication right at the basic level to help make choices with objects of reference, Alyssa is still unable to make choices, we are hoping to improve this with the objects of reference, she cannot currently give a simple yes or no, these are our Major speech therapy goals that we continue to work on

Unfortunately a year after we created the video above Alyssa developed complex epilepsy from the scar tissue of the brain injury, this has impacted Alyssa hugely, as her seizures are not controlled, and we have been told they likely never will be. Her therapy is vital still as it stops her losing the progress she has made, and although it will never cure her or undo the brain damage it helps her gain progress in tiny increments within the perimeters of her brain injury.

Wednesday, 4 October 2017

Become more metabolically aware.

One of the main reasons we created www.faithforhope.com and www.otcdeficiency.com was to try and create awareness through Alyssa's story, Awareness can help people recognise the symptoms and can save children like our daughter or less effected Adults who are still at serious risk of morbidity and mortality, These sites have been created to try and help people become more metabolically aware and to help them to recognise the symptoms, If people involved with Alyssa had been metabolically aware Alyssa may have never nearly died or suffered a terrible brain injury which has greatly impacted her life, so please take a moment to check out the site, it might help save you or someone you care about xx

Saturday, 10 January 2015

Big thank you to Tree of Hope

I want to say a Big thank you to Tree of Hope and all their amazing staff and encourage people to visit there site, Tree of Hope offers hope to the families of sick children in the United Kingdom and Ireland who need specialist medical surgery, treatment, therapy and equipment in order to free them from suffering, giving a better quality to their young lives.

When Alyssa suffered a severe brain injury after coming so close to death, she couldn’t even move her eyeballs at first but then slowly began regaining some control. She was sent to Tadworth for 3 months for rehab but due to the high cost of Tadworth the primary care Trust wouldn’t fund her with the therapy she much needed any longer because of budgets and she was sent home after just 3 months and then once home her therapy was unjustly reduced once again to if lucky once a month again because of budgets even though this would have a negative effect for her recovery.


To do anything independently again she needed therapy and equipment, to be able to walk, talk, use her arms and legs, control her head, feed herself , and roll in bed, She waked each day trapped in her own body that wouldn’t do as she tells it. As parents we were at a loss, we were adapting to Alyssa having a brain injury which left her profoundly disabled with constant 2:1 care needs and were on the go 24/7 and then some while dealing with the grieve of seeing our little girl suffer so much, Alyssa needed long term support with therapy from a paediatric neurological physiotherapist, OT and speech and language weekly at least but a paediatric neurological physiotherapist was £120.00 per session, Occupational Therapy £70 an hour and speech and language £65 a session which was £1020 a month we just didn’t have, as parents we were completely devastated we were already starting to see our daughter regress because of the lack of therapy.

Tree of hope stepped in and gave Alyssa £500 for therapy straight away to stop that regression and gave us a way to fund raise through them, people’s Faith was now my daughters Hope and every penny raised went to Tree of hope and Alyssa’s therapist’s invoiced them, our daughters quality of life has continued to progress as a result while we fought the unjust decision to reduce her therapy, After a year and a half of fighting MCH, the ombudsman ruled that there had been an injustice to Alyssa when her therapy was reduced, The LA have now agreed Alyssa’s finalized Educational statement which says Alyssa needs weekly physio and SALT and fortnightly OT,

The LA have agreed to provide it in the term time for a school year and also has agreed to provide daily conductive education in the home for her education, the money left in Tree of Hope is therefore needed for equipment and non-term time Physiotherapy as a break in Alyssa’s rehabilitation could hinder her progress, we appreciate everything everyone has done for Alyssa, any money not spent in Tree of Hope for Alyssa would be used for other children that need it.

Without Tree of hope Alyssa would have regressed and never gained as much quality of life as she has since her brain injury, please visit and share their site, there are many children out there in the United Kingdom who need Help that will become silent victims of this government’s austerity cuts, little children are being denied what they need for a better quality of life, our whole life was turned upside down in 24 hours when our daughter almost died, we didn’t see it coming and could never have predicted such a tragedy, when your child suddenly needs 2:1contest 24 hour care you have to give up your work and even your home, this is a nightmare any parent in the United Kingdom could find themselves in and its things like Tree of hope that will be there to help your child , so please raise as much awareness of Tree of hope as you can !


                                             http://www.treeofhope.org.uk/



Wednesday, 18 June 2014

Teaching Alyssa to feed herself again.



Eight months ago Alyssa was unable to use her arms.  They were clenched to her sides and she didn’t seem to know what they were for.  She would not reach out, weight bare or do anything with them.  Our therapists from Medway Community Healthcare just kept telling us to make her weight bare and move things far away to encourage her to reach for objects, this was not working as she would not weight bare and didn’t know How to use her arms! She hated her arms being touched and would move out of side sitting.  Although our OT from MCH has been helpful in many ways, and trying his best, we seemed to be getting nowhere with actively using her arms. We was at a loss we didn’t know what to do so with Tree of hopes support we brought in a neuro OT.  This made a huge difference!




Alyssa reaching.

Our private OT Karen explained Alyssa felt unsafe and showed us different ways and techniques of helping Alyssa.  She explained to reach out you have to teach tiny increments, by holding her elbow and helping her reach further and further until she could do it alone.  She made us finger supports and tried various therapies.  Alyssa began reaching out with one hand, she began to accept smaller weight baring and tolerated us touching her arms.  Our private physio suggested constraint therapy as Alyssa’s brain was neglecting her left side.  The improvements from this were mind boggling, she began to reach and grasp with both hands.  So we decided to start trying to teach Alyssa to learn to feed herself again.




It was very hard at first as I had to physically hold a spoon and her elbows and guide her hand into the bowl, then her mouth.  With the support and guidance of Karen Alyssa began reaching out for wotsits.  She did so well Karen told us it was time to progress her to reaching for one wotsit on her tray.  I would guide her hand and she would independently pick it up and put it in her mouth.  With her eating from a bowl Alyssa figured out how to pull the spoon into and out her mouth so now I just guide her hand into the bowl.


We wanted Alyssa back on finger food and with the support of our dieticians we got prescription protein free food.  Although I could physically feed Alyssa a sandwich I knew she wanted to do it herself.  We began with bread, which crumbled so I toasted it.  She has done so well this week with her toast.  Today I gave her ciabatta and she shocked me by putting her hand in the plate and picking up one piece at a time and eating it alone with no help.  I was actually late filming this as she had had a whole plate of ciabatta she had already eaten.  She is now grasping her cup as I tip it to her mouth so that will be my next step.  This little princess astounds me with her determination and courage and we wanted to share her progress.  The video is below.






Wednesday, 8 January 2014

Healthcare children’s therapy

This New Year arrives with new hopes, this time last year Alyssa had already lost much of her therapy as Medway Community Healthcare children’s therapy had reduced it, to our surprise we found that there is no NHS neurological rehabilitation for children under the age of 16 years old. (there is for 16 and above)

When Alyssa was at the children’s trust in Tadworth for her short time we witnessed a whole accommodation which was closed because many Primary care trusts would not fund children so the reality is many children who suffer brain injuries never receive the neurological rehabilitation they need, we have witnessed poor little children who bodies have set and unable to move at all because they were returned to their local community’s and hospital without any adequate therapy.

Tadworth the children’s trust is for the fortunate few children who are lucky enough to get the funding,  draft NHS figures (The NHS’s draft service specification for paediatric neuro-rehabilitation, published in December 2012 ) reveal that around 40,000 children suffer brain injuries every year in the UK, acquired brain injury is defined as an injury to the brain caused by events after birth, rather than as part of a genetic or congenital disorder. Road accidents are a common cause of acquired brain injury in children and young people, but other causes include falls, assaults, meningitis, brain tumours and cardiac arrest.

Tadworth The children trust are only able to help a few hundred of those children each year and since there is no NHS neurological rehabilitation for children under the age of 16 the other children get an inadequate service for their needs.

Our daughter Alyssa who was only fortunate enough to get three months at Tadworth before our primary care trust took away her funding  was like many other children left to a service which isn't funded for neurological rehabilitation.

Our Medway Community Healthcare (Company number: 07275637 ) - Children's therapy who reduced my daughters therapy is a company that gets a set amount of the NHS commissioners ( Primary care trust ) who are basically paid a lot bean counters, so while my daughter goes without the therapy she’s needs from the NHS there are shareholders making a profit on of her back, its privatisation with the NHS paying minimal for the service meaning our children suffer. MCH Claims to be a community interest company yet In 2013, they made a post-tax “profit” of £1,679,520 on a turnover of £52,020,600 (up 5% from 2012) after reducing Alyssa’s therapy that she needed to gain any quality of life back which forced us to fund raise, showing they were maximizing profit for shareholders rather than having primarily social objectives.

Our Community Healthcare got stealthily privatised about two-three years ago, its most likely happened across the whole of the UK in many places,

How my daughter was denied that which she needed to just be able to move again or have any quality of life will be denied to anyone's child unfortunate enough to suffer from a brain injury across the UK, when they reduced her therapy telling us it was budgets they tried to cover themselves when we complained to the department by blaming our daughter saying it was because she wouldn't improve any more was the reason her therapy was reduced, of course without therapy she wouldn't recover so they were self-fulfilling, but luckily after the kind public donated enough so Alyssa could receive weekly private sessions which has helped improve her quality of life.

Medway Community Healthcare which is a private company now gets a set amount from our PCT (NHS) which they have to work within and profit from, if the Medway Community Healthcare say a child won't improve to justify reduction of therapy due to limited budgets the pct (NHS) support their decision because they have budgets to protect being the commissioners, the deal between them both works to benefit both and makes it very hard for the parents to fight against them and with the parents being traumatised as it is from what has happened to their child this makes them very vulnerable and easy  pickings.


Shown in the video MCH own Therapists admit no child in Medway gets more then 16 contacts a year, despite clinical need of the child, such as my daughter.


 









Monday, 17 December 2012

Alyssa Loates


My daughter Alyssa Loates who was 8 at the time got the Norovirus in march 2012, at first she had all the normal effects but then she started to go floppy and started to have confused speech, she ended up in Medway hospital early in the day on the 12th of March and got worse, Doctors tried to suggest it was her Autism, but I argued as her Autism is high functioning and she acted nothing like this healthy, she was screaming, delusional, floppy and could not walk. She was getting worse by the minute and could no longer communicate, as her speech was completely jumbled and nonsensical. She was clearly hallucinating, pointing to the wall, saying things were there, biting her lips. The Doctor put her on a IV, of just saline, he said he hoped that a miracle would occur and just like last time, she would wake fine in the morning (4-5 months before she was in for suspected meningitis/encephalitis) she screamed for hours, she nearly fell out the bed as she could not stand, I remember calling for help, and nothing was done, She eventually slept after a few hours. The next morning the doctor caring for her that day said he had a dream about Alyssa which lead him to come in two hours early on his shift, he asked me to wake her to see if she was her normal self, so I woke her, and she just screamed, and screamed, and screamed I don’t remember him doing anything other then walking out the room.

Alyssa was clearly in agony and doctors still didn't know what was wrong, the Doctor done more and more blood tests that day, being very upset, and clearly worried, eventually he did an ammonia blood test showing Alyssa had OTC, Alyssa had seen doctors all her life and this condition was missed, it's a metabolic condition called OTC deficiency, The Doctor then took her for a CAT scan which he told us was normal, and treated her with another child’s medication as they had the same condition as Alyssa had now been found with. The ammonia kept rising, so the doctor doubled the medication. Evelina (The main metabolic Hospital in London for Alyssa's condition 'OTC deficiency' that Alyssa had just been found to have ) knew the state she was in, but said they had no beds, so they didn’t come for her. It was getting late and Alyssa by now was cold and stiff and Doctors were checking her eyes, one was dilated and not responding to the light, Alyssa then started having seizures, she was seizing uncontrollable, and had stopped breathing, The Doctor hand pumped her and phoned A&E to ask for the respirator system back as they had borrowed it, and they refused, as they were currently using it, so The Doctor had to continue to hand pump her whilst administering more and more epilepsy medicine to stop the seizures, this went on for what seemed like an hour, eventually they stopped and Evelina came for her, the Evelina ambulance team ventilated her and Alyssa went by ambulance to Evelina, when we arrived it was now the 14th March 2012.



Alyssa was admitted to PICU in Evelina. By admission to Evelina Alyssa ammonia was under 100, so they did not have to do dialysis, which is a treatment for high ammonia. Alyssa was settled into a bed, we was introduced to her nurse, and told she would get 1:1 nursing and never be alone as she was still ventilated. We were introduced to the Doctor at Evelina, who told us Alyssa would be fine and not to worry. We was given a room in Evelina hospital so we could be close to Alyssa, later that day they took Alyssa for a MRI scan. The results came back that day but they would not give them to us, they said there was some swelling, but they would explain in the morning. We stayed as late as we could with Alyssa before getting some sleep.
The next day they arranged a meeting, they explained the MRI had shown swelling, currently in the brain stem, Which controls the heart and primary functions, we asked if they could cut her skull to relieve pressure, they said they couldn’t due to the area. They said the next 72 hours were crucial, as its her brain stem which controls the heart, they said she would do 3 things, she would die most likely within 72 hours or she would wake and move, which they hoped for, as the rest of her brain wasn’t damaged, or she would wake and do nothing, and we would then have to discuss things, we were completely devastated, it made no sense to get this far for her to die now, that day the song In The Arms Of an Angel by Sarah McLaughlin started to randomly play on my phone, I was was certain it was Gods way of saying Have faith she's in my arms..

The next 3 days were critical, they occasionally put her on a cooling blanket, as she kept having raised temperatures, but they didn’t use it all the time, sometimes, they just used numerous fans and cold compresses in her groin, neck and armpits. Her blood pressure kept spiking, so they just gave her saline to reduce the brain swelling. This happened quite often, and she had temperatures, then within the 72 hours her blood pressure shot up, and her heart rate shot very low, the alarms all sounded and many doctors came, just giving her saline, and more saline. I asked a Doctor what was happening; they said she wouldn’t live the next 20 minutes, let alone the full 72 hours, that her heart would just stop and there was nothing that they could do, as it was the primal part of her brain what was damaged and if her heart stopped it was because the damage was too great. All the machines blared, and the doctors just gave saline, nothing else. They told us to call the family and a priest. I held Alyssa’s hand and begged her not to leave me, I said I couldn’t live without her, I didn’t want to, and eventually she stabilised by herself to the surprise of the doctors, they said if it happened again she would not live.

She remained stable so we were moved to accommodation at Ronald McDonald house, which was about a 20-minute bus ride away. Alyssa was still having issues with temperatures, and they still only occasionally used a cooling mat, most times just fans were used. One night whilst we were in Ronald McDonald we got a phone call from Evelina, they said her temperature had hit 40 degrees, and caused seizures, but they had stabilised her and we didn’t need to go in, We went in the next morning and I asked the nurse about what had happened and they denied it happened or that they had ever contacted us, I checked her charts and there was no mention on there, and her temperature had been marked as normal all night. I spoke to the ward sister asking if a temperature of 40 degree would cause seizures, and she said it would, This occurred after the first MRI but before the 2nd MRI. I recall them doing the 2nd MRI this same day.

The 2nd MRI showed the mass had surpassed the brain stem and caused swelling in her whole brain. We were called into a room and told this by doctors. We asked the neurologist what Alyssa’s best-case scenario was. He said she would never walk, she would never talk, she would never come off the ventilator, she would be a vegetable, Another Doctor then started talking about Savannah ward but the neurologist interrupted her and said we would never get to Savannah ward and we were living in a fantasy land, that we should turn off the ventilator if given the option as otherwise we would be subjecting Alyssa to a torturous life, with chest infection after chest infection, leading to a horrific death, that other parents had not done this, and regretted it. The doctors said we needed to make the decision to turn off the ventilator so when they attempt to take her off the ventilator, if she failed to breathe, they could let her die, rather then putting her back onto it.

We said we needed time to discuss this and went for a walk, we decided we couldn’t give her no chances, that we need to at least try once, as it felt like murder to us. Like giving up before giving her a chance to fight. We told the Doctors of our decision, from that point on we were followed round by numerous neurologists, harassing us to turn off the ventilator, to the degree where my dad had to tell them to back off, and I cried and said to the neurologists why are you trying to make me give up hope. The neurologists then backed off. .

 Alyssa was in PICU on life support for 13 days and in a coma for over a month.


The day came when they said they would attempt to take the ventilator off , so Joshua (Alyssa's twin Brother ) came up to be given the chance to say goodbye to his sister as the worse was expected, in case anything went wrong. Alyssa was in PICU ventilated for 13 days. Luckily everything was fine and Alyssa came off the ventilator first time, against all medical science Alyssa breathed by her self even though it was apparently neurologically impossible for her to do so. However Alyssa had diarrhoea still and stool samples had gone missing, so more were done, they then found out Alyssa still had the noro virus still, which she had since the 12th March, so they quarantined her until she was admitted to Savannah ward in a side room. They could not stop the diarrhoea so they had to put a picc line that went from her arm to near her heart to put TPN in her veins. The TPN stopped the diarrhoea and she was then cleared from having the noro virus, and went onto the main Savannah ward but in the high dependency section. Since that day the doctors stopped telling us what Alyssa would do and instead come to see, as the only thing medically they could tell us is that she shouldn't even be alive, one of the top neurologists in the country now call's Alyssa her Miracle Girl.







At first she couldn't even move her eyeballs but has slowly been regaining some control she was sent to Tadworth the children’s trust for 3 months for rehab,with only 30 minutes a day of physio, not including weekends and bank holidays, we were very disappointed with which was supposed to be intensive rehab, but were grateful it gave us enough time to find a suitable home that could be adapted for Alyssa. Due to the high cost of Tadworth, the Primary Care Trust wouldn't fund her any longer there and she was sent home to regress, while still on trial for an unlicensed medication in the community, it was classed as an unsafe discharge,






I should note that the care side of Tadworth by Camelia House was excellent and we appreciated the dedication and compassion Camelia showed, still she’s improving as me and my husband spend everyday and every minute exercising her, since we came home in September Alyssa is now able to stand with support, she has started saying words and sentences at times, and continues to improve even though we was told she would regress at home by Tadworth, Alyssa  has been given permission for home schooling as it was agreed due to the complications and effect it could have on her metabolic condition due to various reasons it was best not to put her health at risk,  my daughter is fully dependent at the moment and requires 24 hour care that me and my husband do for her.