Monthly Archives: June 2013

Ramsay’s Disease – the efficacy of Evening Primrose Oil and the Exercise idol (pt2)

Ramsay’s Disease is authored by Dr Simpson who has done years of research and Nancy Blake who has ME.

(Ramsay’s Disease blog entry 1)

Dr. Simpson points out the various studies that show the efficacy of fairly high doses of Evening Primrose Oil in enhancing the fluidity of blood flow.  Fish oils had also had some success, he says.  There have been studies showing that high doses of EPO can assist women with premenstrual tension. It has also been shown to improve luteal phase defect probably because of it’s action on prostaglandin. I already knew about the latter studies and this is why EPO made it into the BNF a few years ago – don’t know if it’s still there. Simpson doesn’t mention luteal phase defect, but then he isn’t writing about fertility problems, he’s interested in blood flow and capillary size in people with ME.

He proposes that “people who develop ME have the anatomical feature of smaller-than-usual capillaries in those parts of the body which become dysfunctional and manifest symptoms…” which seems fair enough,and might go some way to explain why more women than men are dx with ME, (and that’s before you take the different hormone balances into consideration) and then he continues with “after exposure to an agent which initiates changes in the shape populations of red blood cells.” And that leaves us with the mighty question what agent?

I don’t remember being ill before I became ill (if you get me) I didn’t have the classic “flu that never went away”. I didn’t even have the equally common “virus that went away and came back and then never went away” either. I was fine. Then I couldn’t walk and was in terrible pain and other weirdness; but nothing obviously viral.

If Simpson is right and small capillaries are part of the problem then that makes me wonder how many of us were harbouring the problem until something (I suppose the “agent”) triggered it. I’ve always had what adults around me called “poor circulation”. It means I tended to have colder extremities. But that was it. Nothing like the Raynaud’s I now have or the POTs rash and blood pooling or the purple feet and knees, as adverts of my dysautonomia. That’s new. But if I always had circulation problems then that would tick a Simpson box about overly small capillaries.

All of this would lead to poor profusion and explain the muscle fatigue – moving from aerobic to anaerobic at the least provocation; raising lactic acid and of course leading to a crash (PEM/PENE)

Simpson does not claim that taking Evening Primrose Oil could or will cure ME. He’s aware of the complex and just plain nasty side of the disease, but EPO could help blood flow and this should lead to some alleviation of some symptoms.

The lack of acknowledgement of much of the research and complete lack of follow up is frustrating.

At the end there is a discussion of some of the deliberate hurdles and obfuscation that has been put in the way of a proper diagnostic criteria and treatment plan.

As the author notes, if those people who came forward to take part in the much discredited PACE trials were excluded if they suffered Post Exertional Malaise (PEM) sometimes called Post Exertional Neuro Exhaustion (PENE) were excluded from the study then not one participant actually had ME! (cf loc 5185 90% Kindle edition)

The book ends with a very good commentary by Nancy Blake whose professional background is in psychiatry. She points out that a tick box approach to diagnosis is not a good way for medics to decide what is happening or how to help a patient. She also, rightly, points out that labelling people with ME as having a psychiatric disorder without any history of precipitating factors is not going to be accurate.

Misdiagnosing people with ME as having a completely made up dx of Somatoform disorder is deeply unethical. Ms Blake doesn’t challenge the existence of Somatoform disorder in her criticism of it’s use to label people with ME, but frankly as there is no evidence the disorder exists at all, you have to question the motives of the doctor who uses it.

She goes on to note how research is heavily hampered by the downright silly mess of diagnostic criterias available some of which, such as the most ridiculous one, the Oxford Criteria do mention PEM but don’t  have it as required.  This means lots of non-ME are misdiagnosed with ME/cfs as well.

She writes:

Fighting against this illness in the way that medicine and convention expect us to will ensure that we lose not only the battle it also the war – in the short term, we will get worse. In the long term, we may end up among the 25% who are completely disabled.”

I have to agree. I did what I was told at the beginning of all this and now I am much sicker, and more disabled than I think I would have been had I listened to what my body was telling me. There are so many other patients who tell the same story.

Further reading

A story in the Telegraph about a woman who died from complications of  ME

Reasons to home educate

P1010037A friend posted a link to THIS ARTICLE which notes the massive rise in homeschooling families across the states of America. The article suggest the 75% rise is due, largely, to dissatisfaction with the school system there.

I don’t know what the figures are like this side of the pond (I think we learned in the Badman Balls days that statistics were completely arbitrary and meaningless, because they weren’t accurate) but I do remember that reports went out a few months after the election when Badman and Balls were no longer able to come after us, saying, registered home ed families in Oxford and someplace else had risen by 50%. It was almost as if the negative publicity the media had tried to give us had backfired and simply made more people aware that home education was a good choice for their children. The 50% had to be children taken from school and therefore registered with the LA and didn’t include those families who had never sent their children to school.

If you want to home educate in England and Wales you do not need to be registered with the Local Authority. However, if you have removed your child from school you will need to write to the head and s/he will pass this information onto the LA who will automatically register your child. So, as we pulled two children from school we are registered, whereas many of our friends are not. On an even weirder note, in some families one child could be registered and LA loose the paperwork so that other children aren’t. It happens.

A family can choose to register with the LA if they want to, but as there is little to no support from the LA there doesn’t seem much point, and therefore very few families bother.  Nevertheless, despite all the information and legal niceties, far too many HE families report threatening behaviour from the LA person- usually a welfare officer. We have been very lucky in that the LA people with whom I have dealt have been respectful and made the effort to get to understand what HE is. For friends who come under a different authority that has not been the case. There’s been some rumblings that the Local Authority people want to “build bridges” with home educators and in some areas those bridges could be built. Sadly, when yet another family is door-stepped by a Welfare Officer and where “safeguarding” gets bandied about for no reason, those bridges soon tumble. (Part of this, it seems to me, is rooted in the ignorance of the EWOs involved who must think the propaganda about “isolation” is true and come a cropper when some new and apparently green home educator gets help because she knows other more experienced families).

One of the major reasons home educators get cross with poor behaviour from the LA is because so many of us saw our children failed miserably in school – which is under the remit of the LA.

I know many home educators who have chosen this route for very positive reasons. They love the way they can tailor the work to the child and the choices of method, philosophy and resources that are available to home edders that aren’t available in schools. We see our children grow and explore and have time to just be. We see them learn to be with their siblings, setting up close relationships for life. We see their enthusiasm for learning and we can prioritise things properly, adjusting them as necessary.

We are also home educating at a time where resources are abundantly available online or via the post and many of those resources are free. I think many of us who have been doing this for some time have made free resources available and have benefited from other families’ freebies.

Unfortunately there are many negative reasons for home education. Children who are bullied, ignored, too sick, and/or where the school won’t or can’t handle basic medication, or with shamefully unmet learning needs, are removed by parents and successfully home educated. The question that some of us are asked “Do you think you can do it better than school?” has to be answered with a resounding “Yes!” In my case it was more “I couldn’t make it worse…” but now I just know I am offering the children something positive that isn’t available in school. When you look around nearly all of us have at least one child with a “special educational need” (SEN) and yet studies show that home educated children generally out perform schooled children in educational and social testing.

I do love seeing my children enjoy learning and not being ashamed of wanting to learn. I also love that they can have difficulties in certain areas and not have to be ashamed about that either. I love the different things we can go off and study as we aren’t tied into a curriculum. If they struggle with something we have the time and the genuine love to work with it until they are over the obstacles.  

I can tell when one of them is too tired or has simply lost that concentration and can send them to do something else, take a break or just make a cuppa while they recharge and then they can come back to it fresh. Sometimes we decide today isn’t going to work so we can put the lesson off until another time.

I love the way the children at Home Ed Group work together. Ages and special needs of all kinds are unimportant – everyone chips in. If problems occur the mums can deal with it straight away, nipping things in the bud and helping the children remember how to behave properly. We aren’t saints, and neither are our children – all the more reason to be there to deal with bad behaviour straight away.

One of the other major advantages in home education – at least for us – has been helping the children to learn independently.  It’s something I remember someone from the Open University saying about home educated youngsters who took on OU causes under the age of 18. They could already work independently and so could get on with things without the tutor having to say when to open the book and how many pages to read.

Home Education isn’t for everyone. It’s not a panacea against all educational and family problems; but the fact is, it is good for many families and I suspect would be better for a lot of children who are currently being failed in school.

Studies that have been done make interesting reading in that they show children from poorer backgrounds who are home educated do as well as children from so-called “middle class” families.  Schools can’t make this claim sadly.

Home educating is hard work, and there are times when I wish I wasn’t doing it; but overall I think it’s working well for us and most importantly, it’s working very well for the children.

Further reading

The Pagans Are Happy to Socialize Your Children

Home Education; my child hates (insert subject) In our case it’s maths.

A couple of years ago I remember listening to a homeschooling conference speech in which a veteran homeschooling mother spoke of the dangers of forcing a child to stick with a curriculum that isn’t suiting them. She had chosen a Maths curriculum for her son, in line with one used by other families in her homeschool co-op and he hated it. Thinking that he needed to continue with it because the lessons were done as a group she kept him at it. In the end all she and her son had to show for it, was his utter hatred of maths. Not a good result.

math-memeNot long before that I had taken Ronan off Math U See and he was doing Life of Fred with some Mathematical Reasoning. Then I reintroduced him to Math U See and all went well for a while.

We’ve hit the arithmetic wall again. I’d been working with him on it and then I even did the notetaking with him telling me what to write. Nothing was working. He was continuing to do Life of Fred and some other bits of maths but the core was the dreaded Math U See.

So, I’ve taken him off MUS again. I then spent an afternoon trawling curriculum sites and website. I’ve printed off some Grade 3,4 and 5 worksheets to see what would happen.

Without telling him what I was giving him I gave him some worksheets at Grade 3 (he is at the end of grade 4) which he did  in a couple of minutes. So I’ve given him end of year grade 4 test papers which is is coping with fine. Obviously his ability is “at grade” for want of a better system of assessment. He’s even done some MUS problems (Shh! Don’t tell him) without any problem simply because he didn’t know they were MUS. Honestly!

As we come to the end of term I’ll slowly get him up to grade 5 papers and see how he does. I think when we come back in September he will be fine starting his Grade 5 on Grade 5 level maths.  Then I’ll rethink his curriculum from there.

I think I may have to just accept that while the girls are happy with MUS that it just doesn’t suit Ronan. It’s more important that he learns his maths and gets on with it, than he uses the same curriculum as the girls (and his friends).

This site is good Mathgametime.

And this UK based site for Maths innovation (menu list)

Math Mammoth is well known.

I am also looking at Right Start Math but I don’t think we’ll use it as it doesn’t really go high enough as yet – although the new geometry course does look very good. Going to do the placement test though after he’s finished with the sample worksheets and see.

I think I might get some more maths from The Critical Thinking Company for him.

UPDATE – more sites to consider.

Teachingtextbooks 

Mangahigh haven’t checked this out yet.

 

Ramsay’s Disease – ME as it was before the CDC’s politically motivated CFS dragnet was thrown.

I have a dx of ME, but I don’t really know if I have ME. The doctor who dx me did so by accident when I went to see him about the worsening symptoms of my already dx Fibromyalgia. I was getting sicker and sicker and wanted to know how to stop it. He was a truly nasty piece of work. and I came away, not only with no answers, but no hope. Thankfully I’m a tough ol’cow and I bounced back. But I am still left with the question; do I have ME? And this is coupled with the question, “What is ME anyway?” Ramsay’s Disease – Myalgic Encephelomyelitis and the Unfortunate Creation of CFS by Simpson and Blake is a good insight into the research Dr Melvin Ramsay  and Dr Simpson had carried out in England up to and beyond the Royal Free ME cluster outbreak of 1950. His work of blood 000-3d-model-1rheology showed very clear signs of a good biomarker test for ME even back then. His work, however, was sidelined as the psychiatric lobby, linked to the American Insurance Industry and British Government’s welfare cuts took over. A brief but accurate timeline of events shows some of the bizarre and unprofessional behaviours from members of the CDC in the 1980s but also notes a strange attack on people with ME by a couple of pyschs in 1970 (McEvedy and Beard) who tried to insist the Royal Free Hospital cluster and other cluster outbreaks of ME was “mass hysteria.”

♠ ♠ ♠

Nancy: Appropriate treatmet for ME should include a prescription for rest immediately upon becoming ill…” (Kindle loc. 3454 60%)

The understanding that patients with ME did(do) better with enforced rest at the beginning of the illness has been repeated over the years, most notably by Dr Nancy Kilimas (an HIV/AIDS specialist who has done lots of work on ME, especially when she noted that her patients with ME were as sick from the start as her end stage Aids patients). Even anecdotally I can see people with ME who have gone into remission after having gone to bed when they became ill. Research into patients who have gone into remission is sadly lacking; but then research into people with ME is sadly lacking altogether.

Studies suggest that those who get ME younger have a better chance of getting good remissions. Sadly this simply isn’t the case for many children and teens with ME and some of the deaths from ME are in those young ones.

The central theme of this book seems to be the blood rheology results showing that people with Ramsey’s criteria for ME have misformed erythrocytes (red cells) which in turn leads to poor profusion, especially in the brain. The problems with blood flow offered a good explanation for a lot of the memory, language and other neurological symptoms of Ramsey’s ME. Strangely (or not) Simpson a researcher in this area had problems getting his blood rheology papers published despite the slides showing the cup shaped cells. He found that editors of medical publications couldn’t accept red cells could change shape (leaving me wondering what they made of Sickle Cell and Thalassaemia).There have been some papers published on this subject not related to ME Considering the appalling quality of much of the so-called research into CFS and/or ME that is published, it’s a bit odd that Simpson’s papers weren’t published.

More recent findings back up Ramsay and Simpson’s blood findings and this coupled with studies showing small capillary problems points right back to their work again.

Having reached the part in the book where patients climbing three flights of stairs to reach the doctors office and then having very cold hands and blurred vision, I am reminded that all ME patients are not the same. There’s no way I could make it up three flights of stairs!  He goes on to say

Although much was written about “autonomic manifestations”, in the terms of Ramsay’s criteria dysautonomia would have excluded a diagnosis of ME – but if there were a systemic problem of blood flow it could anticipated that capillary blood flow in the nerves of the autonomic nervous system would be impaired.”

I am not sure whether the author is saying that those of us who have a dysautonomic dx can’t have ME or whether the blood flow problems found in Ramsay criteria dx ME patients lead to ANS problems anyway so ME and dysautonomia go hand in hand. There’s a lot of us with dual diagnosis – and getting diagnosed with any dysatonomia is difficult because most doctors haven’t a clue it exists or what it is.

Recent findings in research into women with fibromyalgia seem to back up the blood flow findings of Simpson et al (this report in Medical Daily on the research is clear – you can mute the annoying advert in the sidebar. You might also want to skip the ridiculous cliche “patients aren’t lying after all-shock” introduction.)

I’ll write more later. It’s time for a cuppa.

Further reading:

Erythrocyte Rheology article in BMJ (opens Pdf)

The Fish-Dish (my daughter’s observations of my aphasic moments) (Nb. Please go to the toilet before reading this).

How to commit a mortal sin.

It’s the birthday of St. John the Baptist today. He was to be the last of the Old Covenant prophets, pointing towards the coming of the Lamb of God who brings about the New Covenant.

220px-Jacopo_Pontormo_031According to a small t tradition I have heard recently, John was thought to never have sinned. He wasn’t immaculately conceived; he was conceived with the missing grace of Original Sin, but he never chose to do wrong.  I think this tradition comes from some of the Fathers.

John called people to repentance and then he offered them a form of baptism that allowed them to make a sign of how sorry they were and the intention of starting again and trying to live a better life. This was not the Sacramental baptism Jesus commanded His apostles to perform, but it was a well recognised symbol in Jewish tradition.

John spoke out for marriage and against the adulterous and unlawful marriage of Herod and Herodias. He was arrested, imprisoned and beheaded.

The question seems to come up quite a bit about how many people are really in a state of mortal sin, when they commit mortal sins. Was Herod truly guilty?

Well, it depends. Committing adultery and/or entering into an unlawful marriage is grave matter – that is, it’s very serious. There are many things that are grave matter, that can remove the grace God has put in our souls.

Herod would have needed to know his action was sinful. Now, Herod may not have known, but then John told him, so then he knew. If he knew and committed the act anyway – then that’s a state of mortal sin.

So, in a nutshell; it has to be grave matter – that is, something seriously bad.

The person has to know it is grave matter

And they do it anyway.

“Aha!” says Clever Clogs, “I see the ‘Get out of hell free’ card. If we don’t know it’s bad, we can do it! WHoo-hoo!”

Not quite.

You see while there is such a thing as invincible ignorance – it’s not as easy to be invincibly ignorant as Clever Clogs might like.

First of all there’s the natural law which is written on our hearts. This means that deep down we know that killing the old lady next door, or an unborn baby is a very bad thing. We can ignore the feeling but it’ll be very difficult to explain to Himself that you didn’t know, and couldn’t know at all.

On top of that, most people have access to information that can form their consciences and therefore have an obligation to form their consciences in line with God’s will.

Some people genuinely couldn’t know that something is bad and they do it in genuine ignorance. We can’t say who or when, but God knows. All we can know, for ourselves, is that avoiding the truth isn’t invincible ignorance, it’s willful ignorance and that isn’t a good idea. Doing whatever you like and avoiding anything uncomfortable is a very dangerous way to be a Christian.

So, my advice about hell – don’t go there.

Friday Freebies; Literature and book reports.

frugal friday freebiesI am doing some searching and planning for the Autumn term in Sept.

Book report for The Wolves of Whilloughby Chase Edhelper does have some basic freebies but you’ll need a paid sub if you want the more detailed stuff. Prince Caspian

The Hobbit Unit Study Looks good and it’s free.

Book report printables from Kalie’s hard work at That Resource Site She has a whole load of printable resources

I’ve also signed up to Jump Start. it’s free.

There’s this one here for grade 1

And I’ll still be using the free stuff from STARFALL

I want the children to do more reading and writing over the next academic year, but I don’t want to put them off the books they read by having them dissect them.

Also these free Spanish lessons look good SALSA. Each episode has a pdf download in English and Spanish and an activity sheet. Going by Ep 1 I think they are following full immersion theory of learning a language. It is clearly spoken and looks fun. (h/t Freely Educate)

I can’t make any promises, but over the Summer hols I hope I’ll find the umph to make some story reports and book studies. If so, I’ll send them to Kalei and you’ll know about them 🙂

 

I’ll probably combine it with some copywork.

Ronan cooks his first meal.

Ronan wants to be a baker. He can already bake some pretty good cakes and I have to confess his gluten free productions are better than mine ever were. He is definitely the lead gluten free chef in our house. He has been asking for a while to be allowed a night when he cooks.

P1020718Iona is the cook now. I can’t stand up long enough, or remain safe, to cook a meal any longer. Ronan has asked for Wednesdays to be his night. He cooked his first full meal for five. He made sausages, potatoes and beans. I didn’t help at all. I only went in to the kitchen now and then and made suggestions. He did all the work.

This was more impromptu than planned, but I think we could do some menu planning and he can have a go, choosing his own recipes. His knife control is pretty good – needs some work – but good enough.

He can learn menu planning, budgeting and nutrition  as we go along.

This is a very important skill. It’s one Iona has learned as she went along and one that stands Alex and Anna (his wife) in good stead now that they are making a home for themselves.

It’s sadly rare these days that youngsters can cook, and shamefully more studies are showing that children don’t even know what basic foodstuff is. Learning about food and cooking has to be one of the most important life skills we can offer our children.  They love it.

F.Hodgson Burnett’s Lord Coombe, and my grandma.

burnettfetext04hdhcm10Frances Hodgson Burnett is perhaps better known for her children’s stories such as The Secret Garden  and Little Lord Fauntleroy, but her last novel is a fascinating insight into a world on a the cusp of war. Published in 1922 The Head of the House of Coombe follows the story of a neglected child Robin and her strangely enigmatic benefactor Lord Coombe. Robin’s mother is a selfish airhead while Coombe finds friendship with a chronically ill Duchess who has wisdom.

Coombe travels and observes, coming home to England to sit with the Duchess and discuss his observations. He is concerned, “…The very babes are born and bred and taught only that one thought may become an integral part of their being…that the world has but one reason for existence — that it may be conquered and ravaged by the country that gave them birth.”

The Duchess concurs as her own observations have been the same.

“In little schools — in large ones — in little churches and in imposing ones, their Faith is taught and preached….There exists for them no God who is not the modest henchman of their emperor…”

These words brought back memories of my gran. She was a good Irish woman of Limerick stock who was born in the 1881 and died in 1978. She spoke of the Potato Famine (1845 to 52) with such feeling I thought at first she was alive when it happened. But it was her parents and grandparents who saw it first hand. She married an Englishman who lost his arm in the First World War. She lost her little brother, aged 16, illegally out at the front. By the end of that war the age limitations were being ignored in the desperate bid to replace the dead as the war went on. Jack was killed on the last day of the war.

Gran had three sons, one of whom died of twisted bowel when he was six. Her oldest son grew up and was old enough to join the Engineering Corps in WWII. I was told he was part of the crew that entered Dachau and buried the piles and piles of bodies.

Gran never went to Mass. Her sister, whose fiance had been killed in WWI and had never married, came with us each week, but not Gran. I asked her why she didn’t come with us.

She told me she would never forgive the Church for it’s support of the wars. I was only a child and gran couldn’t explain things to me. I was much older before I began to get a sense of her pain. She died when I was 14. I was also too young and not educated enough to understand her sense of betrayal as Britain was so deeply culpable in the potato famine

Lord Coombes observations from the mind of FHB just brought it all back. He speaks of a culture in which churches and education are all soaked in an arrogance of nationalism that, from Coombe’s thinking, was inevitably leading to a terrible war. Hodgson Burnett is probably writing this with hindsight as the book was published in 1922, but I can’t help thinking there probably were some real life Coombe like people who saw where the culture was heading and may even have been Cassandra’s at court.

World War I was the war to end all wars. It was the war that was to teach mankind that something like that must never happen again. I am sure gran thought that in losing her little brother, her prospective brother-in-law and having a husband come home with one arm missing (he lost it in a canon wheel) that the price had been paid. More than paid.

She just couldn’t deal with the next war.

We have forgotten so much – my generation and our children. We don’t teach them what they could really do with knowing. But truth has a habit of finding a way. As more and more books are available in the public domain and people get to read those forgotten classics like Hodgson Burnett, Dorothy Sayers, among others as well as the non-fiction writings of people like Chesterton, Sheed, and Belloc,  we are beginning to clear our memories. I think something good must happen from that.

Something nasty in the culture can make NFP fail.

temp-chart-and-scanPeople use NFP for a couple of reasons; a), because of fertility issues, and b) because of a religious understanding. The second reason tends to be found among Catholics, Evangelicals, Orthodox and Orthodox Jews.

For those who use NFP because of God’s Truth, it surely must be tied into a relationship with Him. And, surely that should mean a respectful marital relationship. But, just occasionally – and thankfully, it is just occasionally – I come across a situation in which the “rules” are being more or less obeyed, but the commandment to love isn’t.

It is sad, but even in otherwise Christ centred marriages the toxicity of the culture can leave it’s mark. There are stories of people using NFP for selfish reasons. I personally haven’t come across this, but the culture affects all of us, no matter how hard we try to keep it at bay, so I wouldn’t be surprised to know there’s a lot of such stories. The Catholic Church teaches that couples can use NFP to avoid pregnancy for ‘just reasons’ (iusta causa HV 16) but there’s been some unfortunate retranslations that use the word “grave” instead of “just” and on the opposite side “any” seems to have replaced the word “just”. In both extremes it’s the toxic culture that has made things tilt wrongly.

One effect of this toxicity is that couples are often very unsure about when to be open to a new child, and when to use NFP to avoid a pregnancy. The “Is this a serious enough reason…?” questions get asked for often than “Should I be avoiding for this..?” end of questions, but there are issues on both ends of the scale.

But now, I have come across a couple of incidents in which I think the “a man must have sex whenever he likes” side of the culture has crept into the good Catholic bedroom.

The first case I came across was some years ago. A woman in what came across as a very abusive marriage asked if she could use contraception to avoid pregnancy because her husband was ignoring her desperate pleas to not get pregnant again. She had a number of young children and was both physically and mentally unwell. She was so desperate she had moved into another bedroom but he was forcing himself on her anyway. I have to admit being very angry that the official response she received was that contraception is a sin so she must use NFP if she had serious reason…blah blah. Not at all helpful for her awful situation.

Then recently I’ve heard a husband complaining that his wife is using contraception to avoid pregnancy and he wants to follow the Church: all very commendable, but then he said in passing that they’d had two unplanned babies and that his wife is very ill during pregnancy and that he didn’t mind having another one.  So he is quite happy for another whoops-baby even though he knows his wife will be made very ill! No wonder she’s taken to contraception.

Whenever the Big Names blog about NFP, the row in the combox starts. On the one side are those who have had to use NFP, on the opposite are those who’ve never needed it and can’t believe anyone ever does. In the middle are those who can’t get pregnant, with those who have had problems with pregnancy avoidance, and finally those who don’t give a fig what Jesus wants, they’ll do what they want thanks a lot.

But underlying a lot of the ranting is the culture’s insistence that having sex whenever you like is vitally important. So there are those who go along with this, or who react to extremely against it, they fall off the other side of the raft.

There’s a reason the Church hasn’t handed us a list of “just causes” to avoid pregnancy. It’s because She thinks we are supposed to be grownups when we marry. An adult marriage means proper love for one another with Christ in the centre and if things get genuinely difficult your PP should have some advice (and that’s another problem, but I won’t tackle it now).

We are supposed to consider the children we have and each other in a decision to have another baby or avoid pregnancy. In doing so a lot of prayer has to be said and in difficult cases a wise spiritual adviser can help.

Contraception is always grave matter because it separates the life giving aspects of the sexual act. Sex is for marriage and children. It’s why it’s grave matter to have sex outside of marriage.  But just as deliberately refusing the life God would give you, willfully, is a mortal sin; deliberately ignoring the health of your spouse, just because you want sex and don’t care about the consequences is also a sin, and an attack on the Covenant bond.

It’s not easy to love someone else. If it was, God wouldn’t have had to make a command of it. But if we follow the Golden Rule and Love God first, loving the other isn’t as hard. As St. Augustine was supposed to have said, “Love God, and do as you like.” That is, IF you love God, you will like doing things His way.

Heleyna hernia horse and cub camp

P1020713Iona, Ronan and Avila went off to Cub Camp on Friday and got back yesterday and Heleyna had her hernia op at the Children’s yesterday. So her dad did a Father’s Day special, staying with her all day. She came home a bit groggy but the scar is neat and her stitches should dissolve in a few days. We’re leapfrogging calpol-paracetamol with neurofen for pain. You can give both 4 hourly so by alternating you can give pain meds 2 hourly. A good reason not to by those combined children’s meds.

As Miss Avila got a little cuddly rabbit when she had her biopsy some years ago Biopsy Bunny; Heleyna asked for a horse to name Hernia Horse. He arrived just in time for her hospital date. She is very pleased with him.

Avila, who is reading Florence Nightingale’s Nuns at the moment has become a little Flossy herself.

 

Misuse of antibiotics – again.

2The angst over the misuse of antibiotics has tended to be focused on poor old GPs while the shocking misuse in farming gets ignored.

Now we discover that some bright spark put antibiotics into ship paint presumably to reduce the need for drydock so that more money can be made faster.

The fact that there are more antibiotic resistant infections has been well known and well documented for many, many years. We’ve seen new strains of TB and of course the famous MRSA among others. So many patients are finding repetitive infections are no longer responding to antibiotics and the choices they have to fight infection are getting narrower.

Usually the media concentrates on the mythical patient who demands antibiotics when they don’t need them.  My personal experience is that people try NOT to take antibiotics unless they just can’t avoid it.  Frequently doctors refuse antibiotics to people who need them, leaving them to get so sick even a doctor can’t miss it and then they are given a stupidly short course of a broad spectrum antibiotic which, unsurprisingly, leads the patient to need to return to the doctor for a second course a couple of weeks later.  Despite the fact that we all know this happens, the policy remains in place. As far as I can see, this policy is simply a way to help infections become more resistant.  Making sure the infection is completely killed off, has to be a more sensible approach.

For those of us with compromised immunity it’s a recipe for disaster. As we suffer repetitive infection, helping strengthen bacteria with silly approaches to antibiotic use.

I don’t know how dangerous antibiotic paint really is. I do think the massive over-use in farming which allows for poor animal welfare is a genuine problem both for animal welfare and human health. But I do think the way antibiotics are prescribed by doctors is silly. They seem to have their hands tied – if they prescribe properly some daft MP will shout they’re over prescribing, but if they don’t prescribe when it’s needed, then people like me are left sicker for longer and sicker than we need be.

If there really are patients out there demanding antibiotics when they don’t need them; well, doctors can refuse. They could also take blood and sputum for testing; and then fewer mistakes would be made surely.

I wonder if those who demand a script are fearful of taking time off work. Perhaps a more realistic approach to sickness might help. One in which sick people keep their germs to themselves by staying home a few days. The love of money is the root of spread infection.

Will the changes in GCSEs help home educators?

The Conservatives Hold Their Annual Party Conference - Day 4Michael Gove is setting about changing the way GCSEs are done. My dh says one of the changes will be that pupils will be reading whole books for English. That has to be a change for the better – if it happens.

Gove is ditching course work and continual assessment, probably, in light of the unsurprising news that parents and even teachers were doing the coursework for pupils, on a rather embarrassingly regular basis. So, those who cheated were getting better results than those who did the work for themselves.   Gove is moving to an exam only GCSE. Is this a good thing? Umm, I don’t know, but it might make life just a tiny bit easier for home ed children.

If this actually happens then I wonder if home educators might feasibly have an easier time accessing exams.

As it stands most people seem to either send their children to school or college for GCSEs or they (like us) go through the IGCSE route with the massive exam costs that go with it.

There had been some colleges willing to take pupils at any age, so long as they were ready, but that door got slammed when funding changes ensured that pupils able to take GSCEs at 13 or 14 would not be able to and would therefore have to wait until they were of a bureaucratically acknowledged age. I can’t help wondering, sometimes, if Gove et al actually want children to be educated.

Gove has also announced that GCSE exams will be harder. I wonder if this means GCSE and IGCSEs will now be on the same level. At the moment it is generally recognised that IGCEs are harder and therefore of a higher quality.

While on the surface these changes might look good, I’ll wait and see. It’s under this Government that UCAS as ditched equivalencies making Open University points worthless while easier exams are accepted.  It is going to be a massive shift in emphasis from getting an education to jumping through hoops and I am yet to be convinced that this will happen.

It is very frustrating to see that in America many universities are welcoming homeschooled students with open arms because they have noticed how much better educated they are, on average, than schooled children; that over here doors that were open or opening have been shut. UCAS needs scrapping completely, as it’s nothing more than a tick box machine that rejects well qualified students simply because there isn’t a box to tick.

American universities have a massive advantage in that they still meet with would-be students and actually interview them. This helps form a view of whether a student can actually do the work of the degree. Having a box ticked that shows a student has a good memory, is hardly a ringing endorsement as far as I can see. Having a folder full of lovely exam results but an inability to work independently or treat other people with respect is not a good start in adult life.

I am glad I don’t have children old enough for any of this right now. Whether it will be better or worse by the time they are old enough I don’t know.  I did think the children could get work and do a part-time degree with the Open University but they have jumped on the “charge excessively” bandwagon and their courses are simply no longer affordable.

As things stand I would prefer my children to do one of the very good quality homeschool Highschool Diplomas, but as UCAS narrows it’s boxes this might not be the right choice – unless they don’t want to go to Uni over here or at all.

As more distance learning is launched I’ll be keeping an eye on what options the children might have.

Confessions of a Home Educator; I’m not teaching them much,

A lot of homeschooling parents will refer to themselves as their children’s teacher, and I suppose all parents are teachers to some extent in that we have to teach our children how to do things or about stuff. This side of the pond home educators tend to say they are not teachers, but rather they facilitate their children’s learning. I think I’m a bit of everything, but that’s what comes with being a mother. All mothers who mother are teachers, facilitators, mediators, and loads more just by dint of bringing up children.  Is it different being a mother who home educates to being a mother whose children go to school?

Honestly, yes. It’s quite different. There are some things that overlap. I no longer have evenings filled with homework and grumpy children who have done hours at school and now have at least a couple of hours of homework. All the homework is done in learning time so their evenings are their own. In fact quite often their afternoons are their own, and they have learned to cook, paint and do some rather odd science experiments in that time. Quite often learning does happen in the evenings but it’s because they’ve found something that interests them, not because I’ve nagged them to get it done because it must be handed in.

But the main reason I don’t see myself as a teacher is because I don’t have a clue about a lot of the things they are learning. I never did grammar at school so now that Ronan is doing lots of it, I can get completely lost. Fortunately his workbooks are clearly laid out and so if he gets stuck we go through it together. Usually he gets it before I do.

Thankfully the children are not limited to learning only what I can teach them, and this has been good for me too. I am learning maths (properly at last) alongside the children as they watch the DVDs or Khan Academy vids. I am learning Latin (I only know choir-Latin) and Greek thanks to the great curriculum I am able to get from America where homeschooling has been going on longer and where there seems to be a commitment to good resources. I am also learning Spanish with them.

I’ve picked up my love of history again we learn together and there’s plenty of stuff they have taught me over the years as they went off following an interest.

The joy of home ed is I don’t have to be the teacher who knows and talks at them about what I know. I can be just as ignorant of the subject as they are and we work on it together. The fact that so many suppliers offer CD, DVD or other forms of lessons makes this so much easier.

No more “prove it” fears.

We are registered with the Local Authority because I pulled the older ones from school. I was obliged to write to the school explaining I was removing the children to educate them at home. The head then sends the letter to the LA and so we are registered. Families who have never sent children to school don’t have to be registered.

In the early days I was paranoid that I wouldn’t have enough “proof” that I was doing what I said I was doing so we got through a LOT of workbooks and worksheets and I took (and still take) lots of photos.

As it happens I’ve never had to show the LA person anything as they aren’t obliged to look and they aren’t obliged to look because they don’t offer anything to help.

P1020699I still print off a lot of sheets really but now that I’ve invested in a good quality whiteboard the children can use that for lessons and rub it out later. I don’t need to have “proof” on paper.

I haven’t been seen by the LA for a couple of years, which I assume means they are happy with what I am up to.

Skin to skin and co-sleeping. My own story of keeping my daughter alive.

Taken just days before another hospt admission where things were really rough.

Taken just days before another hospt admission where things were really rough.

The “science” on sudden infant death has changed rapidly over the twenty-four years since I’ve been a mother. When my oldest was born I co-slept against midwife advice. By the time my now six year old was born the advice had gone from “no” through “yes” through “maybe” back to “no” to “definitely do it”. We are now back to “no” according to reports I’ve seen via the MSM. I don’t know what the latest study is based on and what variables were taken into consideration, but I do always remember the comment from one researcher some years ago who said, “Where there are no cots, there are no cot deaths.”

A recent story (and there’s been a few like this over the years) tells of a mother who held her still born baby skin to skin and the baby lived.

In light of this, and against the present advice, I thought I would tell you my story. I co-slept with all six of the children; some for longer than others. I did put the older three in a moses basket next to the bed fairly early on, but didn’t do that with the younger three. One morning I woke when Iona was only a few months old to find her lying in the basket, not breathing. I’m afraid I forgot I was a nurse and panicked. I confess, I slapped her and she started breathing, and crying poor kid. My GP was unconcerned and said this sort of thing happens occasionally. Really? Thankfully with Iona it never happened again.

With Avila, it was a different story. My, now 8 year old, daughter didn’t breathe through the night on a regular basis until she was just over 2 years old. I co-slept with her. There’s something in the wiring of a mother breastfeeding her baby that means we are very attuned to our baby. Every time Avila stopped breathing I woke up. There was a kind of silence that woke me and there she was limp and breathless. I would massage her and sit her up and lie her down, moving her around and offering milk until she took a breath. Some nights I would have to get her breathing again two or even three times. One truly awful night I was woken by her “silence” something like seven times.  Despite how sick she was and how much time we spent in the Children’s Hospt. I was never offered one of those “alarm” things. They don’t work with co-sleeping anyway so, in hindsight, I am glad.

One day I met a midwife who had worked in Russia during the depths of Communism when the health service was at an all time low. She told me that what I had done with Avila was something that in Russia they called Kangaroo care. They didn’t have NICU facilities, and babies kept dying. I don’t know whose idea it was, but as an extension of skin to skin, the Russian midwives encourages mothers to hold their sick babies close at all times; c0-sleeping. She told me this saved countless little lives.

I am convinced co-sleeping kept Avila alive and the fact that I breastfed her for so long also helped.  The time when she was tube fed and nothing was working, it was when I expressed and they gave her my milk, that at last, she started to show signs of making it.

I would do it again.

(In that photo she is just past her first birthday. We did a Christmas play with the HE group and then just after Christmas she was admitted, again, to hospital where we saw in the New Year. It was the most difficult admission she’d had. Tube and drip and being mostly unconscious or barely rousable. Nothing was working and I begged for a breast pump. Once I’d expressed the nurse came to see how a bolus feed would go. For the first time in a week a feed went down the tube and stayed there. A few days later she was awake and a few days after that, well enough to go home. There were numerous admissions after that – but none quite that scary).

Confessions of a home educator

P1020692Like most home edders I get the usual reactions from strangers who ask why the children aren’t in school. “We home educate,” I say and one of the set questions that comes back is ,”Are you a teacher?” And I always answer “No,” because strictly speaking I am not a teacher. I never did a PGCE or achieved QTS, so I’m not a teacher. However, just between you and me, I must confess I did teach.

I worked in a primary school Reception to year 1 (that’s pre-k to K for American equivalency). I was taken on to support one child for five mornings a week, but in fact had 8 children with quite significant “special needs” each morning, leaving them with no extra support in the afternoons.

I taught teens who had been expelled from school, or had been in YOIs or prison; many of whom had genuinely been missing education, some since primary school. At the same college I taught adults and supported adults who were deaf, blind, lacking limbs etc.

I also taught at the University.

So, yes, I’ve done a bit of teaching and so I am sure some people will believe that’s the experience I rely on when home educating the children. Well, it isn’t. In fact it has been more of a hindrance than a help as we set out to home ed. I had to unlearn quite a bit.

The first lesson I had to learn was school standards are meaningless.  The huge temptation to wonder if my children were at the “standard” or “level” of other children their age became rather silly when I realised that each child was a mix of “average” and advanced or behind, depending on the subject and that they studied so much stuff that wasn’t part of school life that they couldn’t be measured against the school standard. It’s not easy to let go of these deeply rooted ideas about what constitutes a standard of education, but honestly, it needs to be done.

You may object. “Surely,” you might say,  “Refusing to bear in mine standards and targets, can lead to allowing the children to slide into ignorance and never learn anything.”

I suppose it’s possible that someone would decide to home educate and then simply not bother to do so. But that’s not me. There may be occasions where home ed families are keeping up with the Joneses on grade books and whatever, but most of us are using so many different  curricula, methods and resources that it isn’t possible, and that’s before you add in the gifted and SEN kids that are part of the groups.

I have had to learn that it’s no good trying to make a child fit a method, I need to make the method fit the child. This is how I’ve ended up with such an eclectic approach to educating the children. Each child is different and each child is, as Charlotte Mason reminds us, born a person. As soon as you respect the personhood of your child, you ditch all the extraneous things that treat your child as a cog. It’s not as easy as you might think. I’d spent a long time learning to teach to the crowd and stick to the formula. Now I had to work alongside, rather than teach at a person and quite often learn from them.

I love the way the children will go off and learn something completely independently and then come and tell me about it later. I love that their learning is so mixed, and I especially love that they are not embarrassed to be enthusiastic about what they learn.

There are times when I think we aren’t getting very far and they give the impression they aren’t learning anything. But just as I am thinking, “It’s all a waste of time, they aren’t learning anything!” one of them will come out with something I was sure s/he hadn’t remembered or understood.

Of course that’s the other confession; I so still sometimes think home education is about filling my children with knowledge about stuff, when in fact, home education is about teaching my children how to learn, so they can learn for the rest of their lives.

So many ways to learn, like this very funny Three Little Pigs with some Classical pronunciation Latin words…enjoy.

Ivabradine for Inappropriate Sinus Tachycardia 7.5mg BD: 1 month on.

procoralanI’ve been on Ivabradine (aka Porcolaran) for three months now, but only on the full dose of 7.5mg twice a day for a month. So, what’s happening?

Most of the time my standing heart rate is below 115. Sometimes I get spiky days when it’s up to 120 but I haven’t seen anything more than about 120/122 even on bad days.

Resting HR hasn’t been as good. It’s still often around 95-100 but I have had some lovely 75-80 days.

Unfotunately, for some reason, my OI symptoms are worse. I am blacking out more often and simply can’t stay upright for much more than ten minutes at a time without presyncope, severe breathlessness, blood pooling and other nasties. I have no idea why this is so when my HR is coming down to more sensible levels.

My tremor is much worse when I’m upright too making me wonder about those standing dopamine levels I wish they’d check on. Gravity and I don’t get on very well.

My mid-afternoon crash is getting worse too, where I have to half lie down on the sofa because it’s hard to keep my head up. Not every afternoon, but more often than I used to.

I don’t know whether this is the Dysautonomia side of things or the ME side. My BP is still generally high. It’s a bit annoying that the one side effect of Ivabradine  I could do with -lowers BP – I am not getting!

It’s still early days and there’s more the Prof is going to do with me. Although the OI is worse I still think that as my HR is lower this is a good thing. Perhaps if I get the BP sorted out some of the OI will be sorted too.

If getting the drug cocktail right can at least halt the downward slide, I’ll be happy. I can’t take beta blockers so Ivabradine is it for the IST. The only other thing I can think of for OI might be L-dopa, but we’ll see.

Overall I think, so far so goodish.

READING: NB although many people with POTS or IST can take Ivabradine, it is not safe for patients who also have NMH (Neurally mediated hypotension)

Ivabradine; A Ray of Hope for IST

Ivabradine; Clinical Efficacy in IST

Ivabrdine in the treatment of OI – oh the irony when my OI is worse!

Radiofrequency Cath. Mod Ablation for IST. So far the studies I’ve read on ablation or IST show mixed results with more not working or making things worse than working. In my case I don’t expect to be offered ablation as my lungs are shot. anaesthetics don’t suit me. If your doc offers ablation think and read long and hard before accepting or refusing.

(some) Reasons to Home Educate.

P1020598There are so many reasons I am home educating that I could probably write a book on it. Not a particularly coherent book, probably, but certainly a very big one.

There are certain parts of my children’s academic education that I think are very important and are simply not properly covered by the National curriculum if they are covered at all. I want them to learn critical thinking. We have approached this with visual perceptual skills to start with and then thinking skills and analogies. From there we will look at Logic, fallacies and ordered thought processing.

In Maths, as much as I grouch about the shocking cost of Math U See, it is very ordered and sensible in it’s approach so the children grasp concepts well before building on them with the next ones. It’s a different and more logical approach than what the NC offers.

In science they don’t get as much hands on work as I would like (and they used to get) but from what I gather, they still get to do more genuine finding out type work than is available in schools.

But there’s more than just the academic side:

Socialisation: Yes, the S word. Like most home educators who have been doing this for more than a week I have noticed my children have good social skills; better than I would have expected. Sibling relationships are so much better than I could have hoped for and the children have learned to have patience for youngsters, gentleness with babies and respect for children and adults who are “different”. That’s if they even notice. In our home ed group we have children who look different because of a rare genetic disorder (It is Ectodermal Dysplasias Awareness Month) and a mother (me) who uses a wheelchair and sometimes twitches and jerks about a bit, or gets breathless and can’t speak. The kids don’t care. They all take it as part of life.

It makes me laugh when I hear people say that home educators are shielding our children from “real life”. We are giving them way more real life than they would ever get in school. They see mums pregnant and see the baby soon after birth, they see disability, different ages and all kinds of life in the community.

Quiet time: We live in a busy, loud and rushy-abouty culture. Children need quiet times. They need time to simply be, to read or sit and think. Adults need this too of course, but children especially. The constant full-on activity and noise levels at school are horrible, even for kids who aren’t sound sensitive.  (The number of stories I’ve read and seen and even know personally or children on drugs – usually Ritalin – just in term time should raise a whole bagload of concerns)

When Avila was still very sick, she used to need to go and lie down quietly. Sometimes I’d continue a lesson while one of the other mums would take her off somewhere quiet and read her a story.

Child centred learning; Instead of imposing a pre-packaged system on my children, I am able to tailor their learning to their needs. Ronan gets a more Classical approach and Avila a kind of Charlotte Mason cum Montessori approach while Heleyna gets Montessori with the slow and repetitious approach that she needs while she battles her dyslexia.P1020263

I know, from experience, that if Heleyna was in school now, she would be failing.  Her short term memory is very bad (a common thing in dyslexia) and so we need to repeat and work slowly through things quite a bit. She needs plenty of hands on work and plenty of break times to get through. Even a good SENCO would struggle with that when s/he had so many children with SEN to deal with. I had 8 SEN children in one class when I was working and their needs were so different it was impossible to offer them what they needed. One of those children really needed one to one all day every day and he was lucky to get 10 minutes a week with me alone.

Reading books: Perhaps because four of my children have some level of dyslexia, but also because I think good literature is good for the soul, the mind and life in general, I want my children to read. I want them to read whole books from beginning to end and I want them to enjoy reading. Charlotte Mason put forward the method of narration where the child would discuss what s/he had read. This can be made formal or better yet, an informal chat where the children, having loved what they have read will automatically want to tell you all about it.

The other side of this coin is I get to help them choose the books they will read. This means I can get them to stretch themselves with a book or two which isn’t as easy as they might otherwise choose to read. It also means I can avoid letting them poison themselves with nasties. As it happens bad books haven’t been an issue with us so far. There’s a lot of good stuff out there, some of it old and some of it new, and more of it coming onto the market; so there’s no time for rubbish books thankfully.

Home Ed meet ups: As is the nature of things, home ed groups vary. But the one we attend these days is just a lovely group.

There’s a whole LOAD of reasons I don’t want my children to go to school. I try not to be too anti-school, but so many parents tell me so many things and I remember well the ridiculous targets and boxes to tick even in Reception classes.

One other thing that has been bugging me is the medical papers I’ve been reading recently. I am astonished by the appallingly bad standard of much that gets published. I can’t help wondering if this is the standard Journals think is acceptable, what kind of education have these people had? I went to a working class comp and frankly, I could write better articles than some of the ones I’ve seen. I certainly want my children to have a better education than that.

I love the flexibility of home education. I love that the children are not interrupted by bells and moving to new classrooms when they are settled and interested in their work. I love that they have friends of different ages.

The other thing I’ve noticed and love is that the home ed children play together and there is no gender separation. Boys and girls are happy together and respectful of one another. On a side note, but one that I think pertains to Home Ed, I’ve seen and heard the argument against girls as altar servers, saying it puts boys off serving. At our church boys and girls, men and women, serve together without a problem, and my boys have never said they don’t want to serve with the girls. If any son of mine did say that I would have to have a little chat about respect. But I don’t think (I certainly hope) that this won’t be an issue as it’s simply not an issue with the home ed children we know.

My time with them: I hadn’t appreciated this until quite recently. But the fact that I am around them all the time means they can tell me stuff, ask me stuff and we can just cuddle up and talk together.  The importance of this becomes more evident as they get older.

These are just some of the reasons to home ed. There are so many more.