GUEST POST- Why a PEG isn't just for nil by mouth

Hello to all readers and hope that your SLT careers are off to a strong start. Lauren, the creator of this fabulous blog, has asked me to write a guest post on my experience with feeding tubes and dietary strategies.

A little background: I have atypical Cystic Fibrosis (CF) – a condition which causes severe chest infections and pancreatic insufficiency amongst other things. Of all the things I would have imagined resorting to, a feeding tube was not one of them. I should explain that I am, and generally always have been, a big eater with a huge interest in cooking and foodie activities. I was 14 when I began to experience mild digestive problems as a result of certain foods (notably greasy things and meat). So I went vegetarian. When I was 16, my problems would flare up after any amount of fatty food. So I went vegan. I’d eat nuts to try and prevent nutritional deficiency as at this time I was a keen runner, clocking 40 or so miles per week and competing at County and intercounty level… but these didn’t agree with me at all.

A carb heavy diet was no bad thing for a long distance runner with a good metabolism but I was constantly starving hungry and seemed to eat my body weight each day. My chest had always been a conundrum, with random chest infections requiring hefty courses of antibiotics and steroids to clear up, yet I was so fit that it would have been a bit OTT to keep getting referred to respiratory specialists who could find nothing wrong with me apart from being a bit “productive”. My lung function was outstanding and I and my parents decided to accept that I was prone to chest infections and asthma.

All changed when I started University to do my Biomedical sciences degree. I did well academically, met the best friends anyone could ask for, and running was going incredibly well. I did catch all the fresher’s germs though, and began a downward slope of continued chest infections which I couldn’t seem to clear. I seemed to lose a little bit of my “puff” with each month and never felt fully clear in between bouts of illness. My running performance began to plummet and I was befuddled, to say the least. My diet hadn’t changed (still cramming carbohydrates and not much fat or protein, which was now normal for me), I was sleeping enough, I putting the same, if not more, effort in to training. I was admitted to hospital several times with difficulty breathing, low oxygen levels and chest infections/pneumonia. It was highly unusual for an athlete, I was told, unless I was smoking or forgetting my asthma inhalers.. which I wasn’t!

My 5th emergency admission with a dodgy chest raised concerns and I was referred for a sweat test and CT scan. In the time it took for those to come back, my Mum arranged for me to be transferred to the London Chest hospital in the hope that they would finally take me seriously and sort something out. I was told that I had an unusual, mild form of CF and that was that, really. I was introduced to Pancreatic enzymes which I took with my meals – and could finally eat fat and protein foods in abundance again. As you can imagine, I was thrilled to be able to eat chips and meat again and partake in normal food behaviors with my friends, not always being the picky one. I naively imagined that this would be it now, that I’d be in decent health on new medications and physio routines.

Unfortunately I continued to suffer bad chest infections and my lung function has dropped a fair bit over the years after a couple of pretty terrible pneumonias and operations to remove a segment of lung and some dodgy lymph nodes. It was stressful, to say the least. Understandably in that time, my weight fluctuated and I was introduced to NG feeding overnight to try and gain/maintain weight a bit more easily. My appetite was shot for quite a while and I was dependant on supplements and junk foods as well as NG feeds to keep my strength up. I learned to pass the NG tubes myself which wasn’t too difficult, so that I could pass a new one each night and avoid stares during the day. It might be forgivable after the stresses of illness and the constant focus on my weight, that I developed an eating disorder.

My digestive problems flared up, probably as a result of not taking enough creon and I had a longstanding partial blockage. The sickness it was causing me last year was unbearable and something in me just snapped. I blamed everything on myself and was convinced that my problems were diet related. So I went back to strict veganism and health food addiction, and refused anything with any fat. I wouldn’t even touch foods I thought would contaminate my system. I was convinced that dairy and fat were causing my chest to be worse and that I could control my stomach pain by eating only starchy vegetables, some rice, oats cooked in water and lots of fruit and vegetables. Except, not too much fruit because obviously this was the cause of my early diabetes. And not too much starch because that would worsen my headaches. And not too much soy milk because this would worsen my amenorrhea. And so on, and so forth.

Not surprisingly, my weight plummeted to 36kg and I was admitted to hospital with a cold in the Summer of 2012. My sickness was investigated and I was commenced on heavy doses of laxatives to clear out the accumulated gunk which was blocking everything. I was in denial that I was essentially anorexic. I didn’t want to lose weight and knew I was a bit thinner, but I couldn’t see just how skeletal I’d become. I was fussy to the point of frustrating everyone around me. My blood sugars were impossible to keep up due to the lack of any fat reserves and state of starvation, and I was reliant on a glucose drip to stop me from passing out with severe hypoglycaemia. Something had to change. I was sick of fluctuating and could no longer tolerate my NG tube as I have nasal polyps.

I was sick of looking at food and talking about it. I no longer trusted myself to make sensible food choices and was upset that I had worsened my problems. I began to reintroduce foods with a better profile, take more responsibility with my Creon (enzymes), and counsel myself through mealtimes and “fear foods”. It was brilliant, but not enough to gain much weight (as CF calorie requirements are high anyway).

I opted to have a PEG inserted to take the stress off of me as my issues had partly been because of the constant struggle to eat enough and have a perfect diet. Once I’d recovered and was feeding 5-6 nights per week on 1500 calories of formula, I felt better. I had the energy to put in to my life again and the sensibility to make normal (read: not perfect/healthy) food choices. I realised that it’s ok to eat things that are just enjoyable. That this will do you good in ways that can’t be measured with blood tests and scales.

It’s ok to eat things that other people don’t like, just because you enjoy them. It’s ok to skip meals sometimes and make up for it later with a big meal. Similarly it’s ok to eat when you aren’t hungry, simply because everyone else is and it’s fun. I gained an enormous amount of weight – I’m now a very healthy 50kg at 5ft1 and you can really see the difference. I’m not fat or thin, just healthy looking. I’ve very recently weaned myself off the tube and I’m trialling maintaining weight by a high calorie diet with lots of variety, not too much planning, and use of oral supplements when I’m not feeling well enough to eat proper meals. It’s going very well indeed. I can honestly say, if it weren’t for having the Gastrostomy, I’d never have got over that bad patch last year. I was in too deep to do it all myself and having that safety net was very valuable. It allowed me to nourish myself well before my head and my stomach were fully up to the challenge. I was struggling to accept the necessary variety in flavours and textures when I’d been eating so little and was so confused by it all. It allowed me to stop thinking of food as a decision, and more of a medicine.

Obviously food can be many things… and fun is one of them, but sometimes people with longstanding illnesses and nutritional problems need to be able to restore nutritional stability before anything else improves. Having 3000-4000 calories of actual food to decide on, stare at, chew, taste, decipher and digest is sometimes insurmountable and the use of tube feeding while asleep can help overcome this. Admittedly I did have to psychologically work on a lot of things but physically, the tube gave me the strength to do so. I like the tube as a safety net but I do feel that once it’s removed, it wouldn’t be a big deal if I do ever need one again… although I remain confident that my “everything, and plenty of it” regime will suffice for a long time to come.

by Michelle

GUEST POST: 'my experiences with AAC' by Elijah

iTaalk with Elijah

by Elijah Hall (and a little help from mum)

 

My name is Elijah. I am 14 years old and in the 8th grade. I was diagnosed with Aspergers

Syndrome at 8 years old. Recently, I was diagnosed with Attention Deficit Disorder (ADHD),

and it was found that my working memory, the part of my brain that holds little bits of
information while a task is being done, is very low functioning.


When my mother and the school were writing my IEP, she found out that the school did not have any technology like a tablet, and was not required to buy one for me to use. The insurance
company would not pay for one because I am too high functioning. I was using a netbook, a
camera, a watch, and to PDA, to do all the functions that I needed to even begin to get organized.

Sometimes I forgot to set an alarm or where I had put my camera. Too many different pieces

were hard to keep track of.

My mother got together with iTaalk Autism Foundation and their Vice President, Tammy, set up a way for Mom to raise money to buy an iPad for me. Working through Facebook, she was able
to raise the money in less than a week. Mom bought a Clamcase so that I have a keyboard
attached all the time and it is more protected.

 

With my iPad, I keep everything in one device that I have with me all the time. I have

organizational apps that keep me on track; my calendar, my schedule, my assignments, my
chores, all in one app. I use Pages for writing any assignments and all word processing. I use
the alarms to remind me to start or stop a task.

I use the camera to photograph the board where my assignments are written, which used to take me as much as 10 minutes to write down, and photograph powerpoint notes. I can use Siri or Dragon to dictate writing. I can type at 11 words per minute now but I use typing programs to help me practice to increase my speed. I am told there are even apps that I have yet to discover to help me learn and even exercise my working memory in the future.

I began to think that other Autistic kids must have this problem too. I talked to Mom and she

said that Tammy at iTaalk told her that there was. Many kids fall in between what the insurance company will pay for, what the schools are required to provide and what the parents can afford. I decided that I would help Mom and we would keep raising money for other Autistic kids to get iPads. We spend too much of our time trying to keep up in class that it is hard to really learn.

We have set a dream goal of 500 iPads for 500 kids!! Right now we are working to get one for

Kyle, he is a Senior at our high school. Kyle has apps that work for speech therapy. You can
read more about him at www.itaalk.org/kyle.html We are more that half way to raising enough
for his iPad. Some kids are even non-verbal and will use their iPads to communicate.

 

Read more about all of us......

iTaalk Autism Foundation: www.itaalk.org 

Elijah: Twitter: @itaalkelijah

Facebook: iTaalk with Elijah

Blog: itaalkwithelijah.wordpress.com                

iTaalk

GUEST POST- 'The Children's Trust': A child living with a ‘hidden disability’

A child living with a ‘hidden disability’

Did you know, according to draft NHS figures around 40,000 children suffer an acquired brain injury (ABI) every year as a result of an accident or illness?

Just as each child is unique, so is the way they respond to a brain injury. There are two main types of brain injury: ‘traumatic’ caused by a blow to the head such as a road traffic accident or fall, and ‘non traumatic’ caused by illness such as meningitis, a brain tumour or stroke. But there is an enormous range of difficulties a child might face – from subtle problems with memory, or speech to serious, long-term, physical and learning disabilities.

The majority of children and young people with an ABI developed normally until having a serious accident or sudden illness. Sometimes the physical, cognitive and behavioural changes are very noticeable.

But other children who appear to have made a good physical recovery may have no visible signs of a brain injury, and the expectation is that they will settle back quickly into family and school life.

It is this latter group that may start to have problems particularly at points of transition e.g. starting senior school. They may have problems with their behaviour, attention, memory, organisation or planning skills, and could get tired more easily. They may struggle to keep up in school and social relationships can suffer. Ongoing specialist support might be needed to help them adapt to academic life and reach their full potential.

The Children's Trust is the UK’s leading charity for children with acquired brain injury, multiple disabilities and complex health needs. Our services include brain injury rehabilitation and community-based support, working with hundreds of children and young people from across the UK.

We developed our Brain Injury Community Team to help these children and young people, support the network around them (their family, siblings and school) and aid them in understanding their needs and how to manage them.

The Children’s Trust also runs the Brain Injury Hub, an online information resource to share its brain injury expertise, which includes an interactive forum.

If you would like to find out more about The Children’s Trust visit www.thechildrenstrust.org.uk If you’d like to know more about brain injury please visit the

Brain Injury Hub, The Children’s Trust’s information website www.braininjuryhub.co.uk.

Thank you to Michelle from The Children's Trust as my first guest blogger! If anyone else would like to write a post please contact me on twitter @LaurenpreSLT or by email llongh@essex.ac.uk

 

Should teachers get vocal training as part of their PGCE (or equiv.) training?

 

It is agreed that professional voice users are more likely to have hyperfunctional voice problems. Yet despite much research into voice disorders of teachers and anecdotal evidence to suggest many voice referrals come from the teacher population; as far as I am aware there is no education given to teachers about how to look after their voices.

Hyperfunctional voice disorders can be attributed to multiple factors (e.g. muscular tension, lifestyle, reflux, technique, psychogenic elements) and evidence suggests that dysphonia is a major cause of staff sickness and absence from the classroom.

It is usually agreed that voice therapy is the preferred treatment option.  It has favourable outcomes and in many cases a patient can return to their pre-morbid voice.

Voice therapy costs services money. Most referred patients require a laryngoscopy and initial assessment, followed by an episode of direct therapy, perhaps combined with some indirect work too.  Outpatient’s services are characterised by long waiting lists and for voice patients there is a high number of DNA’s, although reasons for this seem to be unknown.

Some sources suggest education alone can help the patient make changes to their breathing and vocal technique. It raises their awareness and can help patients make changes to their diet etc. which in turn impacts positively on their voice.

A PGCE year for a prospective teacher is stressful, time-consuming and obviously the priority is teaching teachers how to teach. However, maybe some group education on how teachers can use their voices effectively may save them time and stress in the future when they find themselves referred to SLT services for dysphonia and have a positive impact on services too?

 

References

Mathieson L (2001) The Voice and Its Disorders (6^th ed). London: Whurr.

Rammage L, Morrison M & Nichol H (2001) Management of the Voice and Its Disorders (2^nd ed) CA: Singular.

RCSLT (2006) Communicating Quality 3. London: RCSLT.

Roy N, Merrill R M, Thibeault S, Grey S D & Smith E (2004) Voice Disorders in Teachers and the General Population: Effects on Work Performance, Attendance and Future Career Choices. Journal of Speech, Language and Hearing Research, 47, p. 542- 551.

Smith B E, Kempster G B & Sims S (2010) Patient Factors Related to Voice Therapy Attendance and Outcomes. Journal of Voice, 6, p. 694- 701.