We are fundraising to get the medical treatment that Teagan needs.
In 2017 Teagan's health started to deteriorate. From a small child, her joints would sublux, and her knee would often dislocate, but at the end of 2017, she had a sudden onset of a condition called Complex Regional Pain Syndrom (CRPS) and needed specialist treatment in Oxford.
As the year progressed she had heart issues where she would frequently struggle with heart rates of up to 270bpm and complete exhaustion. At the end of the year, she collapsed at school after light flickered in her eyes, and was rushed to resus being unresponsive. She had back-to-back seizures which rendered her paralyzed. Being unable to open her eyes, talk, or voluntarily move her limbs, we spent Christmas of 2017 in hospital. A tube was inserted through her nose to her stomach (NG tube) to be fed, but her body rejected much of this. She was hoisted to be moved, lost a terrific amount of weight, but after 3 months at our local hospital was moved to Great Ormond Street for a further 9 months. She had a condition called Functional Neurological Disorder (FND) born out of what we believe to be the chronic pain.
She says- "Swallowing continued to be problematic and so I was permanently fed via NGT. It had its ups and downs, to say the least, but in Feb 2021 my digestive tract seemed to fail me. I was unable to keep food down, lost a lot of weight, and required a lengthy stay in hospital. Things deteriorated more when I had a horrendous migraine, and what little my GI was managing to do, seemed to stop. My digestion ceased and was unable to keep absolutely anything down. For 5 long weeks, the hospital tried their hardest with different NGT feeding regimes and breathing techniques. Nothing worked, my body just rejected everything. I was eventually fitted (with much difficulty) with an NJT (A tube that goes up my nose, down my throat, through my stomach into my jejunum - or the 1st part of my small intestines).
This actually worked, My body started to absorb nutrients, and medicines and although I was attached to a pump 24 hours a day, I had a quality of life back that I hadn't had for ages.....
It flipped. The tube came out of my intestines and back into my stomach and once again I started vomiting. This was the 2nd of October this year. The hospital attempted to replace the tube, but the procedure failed as my muscle from my stomach to my intestines was too tight. I have since then been unable to keep ANY feed down, my weight has dropped dangerously low, I feel awful, have collapsed, and is effecting all of me, I don't even have any energy to do message my friends and family back sometimes.
I am hooked up to a drip, the hospital attempt to feed me via my NG tube (the one that goes into my stomach) but again, no matter how the feeding is varied, my body rejects it. We are trying breathing techniques again to try and stimulate my diaphramatic muscles, but as last time, it just delays the enevitable, gives me more pain, and my sickness is then more forceful which is horrid.
Earlier in September, we had a fantastic consultant that reviewed me head to toe, she finalized a set of diagnoses that fit me perfectly; such as Gastroparesis, Autonomic Dysfunction ( Dysautonomia ), Colonic Motility Disorder, Hiatus Hernia to name a few of those that affect my intestines + digestion. Unfortunately, because little is known about these conditions- I feel I am being misunderstood, not being provided a method of feedng which is in NHS guidlines for my condition, and simply not listened to. My voice just isn't being listened to by decision makers and in turn, treatment that will help me is not being done. My quality of life has gone back down to nothing and I am spending another Christmas time in hospital which could have been avoided.
For reasons we cannot understand, they are refusing to feed me in a way that is proven for my body to work. Some treatment plans are not available on the NHS and so we need to have the option to go privately for treatment to get me nourished.
I have scoliosis from the deterioration in my muscles from malnutrition which will result in needing spinal surgery next year if I don't start gaining weight ASAP, and then in turn have physio to help halt the progress. My teeth have started to erode because of the acid and ( as of
writing this 20/12/21 ) they have had to take off my brace prematurely due to these reasons. I am more suseptable to infection and my white blood count (nuetraphils) have been less than half the lowest rate they should be, a third lower than the published low rates. I am 5'4 and my weight has plumetted to 36.4kg.
So, what I really need is a way of being fed. It is not straightforward as I have all sorts of diagnoses that are not common and baffle a lot of professionals, but to me - and to many other people who have been involved in my care, I just need nutrition URGENTLY as I simply can not be left to starve as I am for any longer. I need a life back. I need an education, I need to be out of hospital.