7 Years ago, a goal!

Player of the match and scored a goal, cost his Dad £10.

Today has not left his bed and it is nearly 4pm ūüė¶

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Life of a 2 year old

Looking for my son’s height, weight, blood pressure and heart rate since birth before he sees a¬†gastroenterologist for his nausea I came across his activities aged 2. This is the teenager who now struggles to achieve¬†1000 steps a day and rarely leaves the house.

Monday РLittle Bears, 10-11.30am cost £2.50

Tuesday РSwimming, 11-11.30am cost £3.50

Wednesday 1st and 3rd of the month, Toddlers Service at Church

Thursday РTumble Tots 10.45-11.30am cost £3.75

Friday – a day at home

Although he was soon to move from Tumble Tots to the free play session at the local children’s gym as he could just run, climb and jump, plus they had an adult size trampoline.

Interestingly I took him to the doctor’s regarding his leg cramps around midnight when my husband or I would end up pacing the floor with a toddler in pain. Last month he finally had tests regarding these cramps, 15 years after they started!

 

Gaming

Son used to be out with his mates most nights playing football or hid and seek around the estate (loads of green areas) plus swimming training 4 times a week until he was 11. Then his migraines started and he turned his friends away from the door. He had little social interaction with any of them for over 2 years, they tried but he turned them away.

He was rarely in school but the school did offer to make a small room with comfortable chairs available for them if he made it in and stayed for lunchtime. Which he did not manage.

He moved to PC from X box and the rest slowly followed. There are months with very little online gaming but he does speak to his best mate, who he has known from reception (aged 4), most days.

Gaming is a judge of how he is doing, from in bed, in bed listening to classical music, changed rooms, so sat at a computer and very quietly watching youtube, mainly science or shouting at his mates playing a game.

Gaming is his social life, he does know what is happening at school, he does have conservations with his peer group. Although only 16/17-year-old young men.

They do ask him out, sleepovers, pictures, go-karting and he does once or twice a year.

He has a CEA card which if used once a year is a saving but more often would be great.

Even he can measure how bad he has been but the figure generated on his computer,  he has only played online for 15 hours over the last 2 weeks whereas one of his mates has been gaming for 82 hours plus attending school full-time and working 10 hours a week.

Two very different lives, two boys who started school together and both are studying for A’Levels and planning to attend university. Will mine succeed?

 

 

21st Century NHS Communication Systems (parents stress)

Dear Healthwatch,                                                                                                    Letter dated 18th June 14

Further to our conversation on Saturday regarding medication and lack of communication between computers at secondary and tertiary hospitals.

From obtaining eventual a referral to tertiary hospital and being seen promptly, you will see from the attached letter from Dr A a request was made for the secondary hospital to carry out a 24-hour monitoring. This is where everything then goes pear shape.

I was rung by secondary hospital appointments about the 18th March and was offered the 6th May as the earliest appointment they could offer. I stressed the fact that son had an appointment at the tertiary hospital on the 19th of May and the result had to be there before then. I was promised this would not be a problem.

So you can imagine my surprise that a) the results were not there and b) Dr A could not access secondary hospital system.

What a waste of appointment, travel and taking my son out of his science lesson.

Dr A needed these results to support his diagnose of PoTS and enable him to prescribe medication to raise his blood pressure.

So the following morning I was sat in secondary hospital’s PAL’s at 9am, result sent to Dr D at secondary because secondary cannot see what other appointments a patient has within the NHS and as son had an appointment on the 30th May with Dr D they sent them to him.

I spoke to Dr D’s secretary and she did not even have them but promised to acquire them and email to Dr A secretary.

I also spoke to Dr A secretary and she had to email secondary to obtain them.

That resulted in the May letter attached. My GP responded by saying they could not prescribe it and having read the PoTS and link to NICE website I understand why.

For the last 2 weeks I have been ringing Dr D and Dr Al secretary and speaking to both hospital pharmacies with little success in obtaining midodrine but I do now know that tertiary have it in stock.

Today as a result of the combined force of the 2 secretaries I was rung by Georgie the cardiac paediatric nurse at tertiary to be told that there is a lot of paperwork which needs to be completed first and son will  have to be admitted, probably just as a day patient to check for no adverse reaction to the drug.

So please do log this problem of communication.

I also spoke to my MP  last night at a parliamentary reception on primary headaches at Westminster and I am sending him a copy of this email.

Fludrocortisone was eventually prescribed but no stay in hospital or even any observations taken after the first dose. Just sent home with the prescription!

How Many Professionals has One PoTS Teenager seen in 2017?

Having attended a meeting to write a Disability Strategy at my local council, one of my complaints is the number of Occupation Therapists my son will have to see just for aids for the home and school as each location is a different department.

I started to consider how many people have been to our home this year for his Education Health Care Plan, lessons and exam,

Added to this those whom he has seen outside the home, from interviews for Post 16 placement, assessors for benefits and finally health professionals.

The answer was frightening and son still has to go back to the hospital before the end of the year for a muscle test.

The tally to date is 60, well it was before a chemistry teacher rang up to ask if she could start teaching this week РFriday, then  Monday, Tuesday, and Friday next week.

I pointed out that Monday is Christmas¬†Day and Tuesday Boxing Day (not that it will make much difference to my son’s life) so she will do an hour and a half Thursday and Friday next week instead.

Son also has his hospital appointment next Wednesday for a muscle test.

So how did I arrive at this staggering figure?

Coming to our home in 2017

There have been 3 teachers teaching Science, Maths and English twice a week up to the GCSE exams in the Summer.

2 exam invigilators (from school)

2 SENCOs (Special Needs teachers from school)

1 School Welfare Officer

1 Carers Advisor  (from a service Council contract out)

1 Youth Support Worker (from Council)

1 Educational Psychologist (from Council)

2 OT’s (OccupationaTherapistst¬†from the Council’s Children Services)

2 SEND Advisors (Special Needs from the Council)

1 Social Worker (from the Council)

1 Independent Support from Parent Partnership

1 Independent Support from Core Assets

A total of 18 people coming to the house

Interviewers, Special Need staff to apply to 2 colleges and a school makes a total of 6

Benefit assessments

1 for PIP (Personal Independent Payments)

1 for ESA (Employment Support Allowance)

1 Blue Badge

Health

1 private cardiologist

under the NHS

1  paediatric cardiologist

1 Physio

1 Arrhythmic nurse

1 Chronic Fatigue nurse

2 clinical psychologists

1 Social Worker

1 consultant

3 psychologists for note taking!

1 podiatrist (feet)

1 Optican

2 Active Stand testers

2 lung testers

1 Echoscanner

2 seven Holter fitters

2 GPs

4 nurses to take bloods

at least 4 different nurses to take height and weight

2 muscle neurologists

 

 

 

 

 

 

YHA (Youth Hostel Association)

I have a life membership of the YHA, purchased over 5 years when I was in my early 20’s as it was a good deal as my friend and I¬†was Interrailing ourselves round Europe. I have also stayed in YHA’s in Australia.

So when I received an invitation to an overnight event including dinner, breakfast, lunch and a walk I decided it was the YHA’s way of making up for the Carers Grant from the NHS I was not awarded this year.

I set off early, stopping on route at St Albans for a look round their Christmas Market, shops and Abbey.

I arrived at my destination YHA early with no real idea what was going to happen but meeting new people, being fed and water was enough for me.

Before dinner, I met my roommate for the night, she complained about the room, the temperature although she constantly told me that she never had the heating on in her flat.

She continued to complain about everything, even though I pointed out we would not be woken at 3am by drunks heading back to their rooms, her counter complaint was that she could hear people moving around in the room above us! She left early on the Saturday as completing a quarter of our 3-mile walk still complaining!

I learnt about the new projects, refurbishments plans, why so many Youth Hostels had had to close, some I had stayed in like Malvern Hills when completing my Duke of Edinburgh Gold Award.

It brought back memories of Guiding my introduction to Youth Hosteling in the Forest of Dean and hiking between St Briavels and Welsh Bicknor hostels.

The years of inter-railing, international conversation,  came flooding back.

We had a lovely 2 course dinner with wine, followed by more information on the YHA.

In the cold crispy morning a full cooked English breakfast followed by a 2 hour walk round Lee Valley with like-minded individuals talking about a range of subjects.

Followed by another talk and lunch.

Thank you, YHA for providing my much needed respite.

 

 

 

 

How much does one’s meds cost?

On the right is my son’s daily diet from September to November this year, on the left since November when Ivabradine was added.

The monthly cost of these tablets is

Midrodrine £75.05

Amitriptyline £0.96

Fludrocortisone £19.58

Vitamin D £3.51

Ivabradine £20.08

A grand total every 28 days of £119.18, daily £4.28, annually £1553.59

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Brushing Twice a Day

My son has been under the same dentist all his life, a lovely man who stands there pen in hand, records ready to record.

‘Have there been any changes in the medication?’

He moves on to the usual dentist questions, drinking, smoking – son is now 17.

‘Are you brushing twice a day?’

I know the answer to that, once a week would be a better question.

My son answered with not every day.

I was also thinking, an hour ago he was smelly, greasy haired teenager who has just showered well sat on his bath board and aimed the shower attachment at his body and hair. He has brushed his freshly washed hair and CLEANED HIS TEETH.

 

Depth Perception and Falling

Syncope and stairs are always a hazard, this evening my son in his words,

”My¬†depth perception failed and I missed the handrail”.

My response was, ”Your what”.

This was then followed by a scientific¬†explanation and why didn’t I know what he meant.

For those equally mystified,

is the visual ability to¬†perceive¬†the world in three dimensions (3D) and the distance of an object. … Binocular cues include stereopsis, eye convergence, disparity, and yielding¬†depth¬†from binocular vision through the exploitation of parallax.

You wish you never asked.

He saved himself from falling all the way down the stairs by ramming his arm into the gap between the wall and handrail, His arm hurts now!

Thank you to our local council Children’s OT Service for that second handrail on the stairs.

Parents take their fight to be heard to Parliament

I have a PoTS son, who has not been damaged by the HPV jab but I know full well the impact on the daughters and mothers and families lives too well.

Unreported World

By Morag Livingstone, Rubia Dar and Dean Cox

A group of parents unhappy that there is no recognition by our Government that a significant number of girls are falling seriously ill following receipt of the HPV vaccine are taking their case to an open Lobby in Parliament on Wednesday 25th October.

The HPV (human papilloma virus) vaccine is a vaccine expected to reduce the incidence of cervical cancer in the future and has been offered to girls in schools since 2008 as part of the NHS childhood vaccination programme with at least 8 million doses being given. Available to all girls from 12 to their 18th birthday and free from GP surgeries if they miss it at school at an estimated cost to government of over £1billion, it is currently being considered for boys as well.

The media has previously reported that in some ‚Äėrare‚Äô cases girls are falling ill‚Ķ

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