Purple and Green Spots

[charlie]

I have decided to start writing a book to help others through the minefield that is a childhood food related problem and I am going to call it Purple and Green Spots.

I had a major fall out with my daughters headteacher on Friday as she finally owned up that SHE does not now believe there is anything medically wrong with Megan. And therein lies the problem I have had with her school. According to her now that Megan is eating school dinners and is "fine" after them there can't be anything wrong. So why I ask has she had so many days off sick with feeling sick, headaches, earache, vomiting and diarrhea. And every evening she feels sick and farts for England. I said to her - "just because she doesn't break out in purple and green spots and foam at the mouth after eating doesn't mean she isn't reacting to it!"!

So this is the problem alot of us parents face, the ones that go into anaphylatcic shock show a reaction immediately, but alot of the sugar malabsorptions build up gradually. The fact that megan is struggling to keep up at school, some days produces little work is obviously just because she is being difficult and lazy.

I did have the most frustrating meeting on Friday morning. They set up what is called a CAF for her and the idea is that anyone involved in Megan's care is supposed to have udates about them and submit information and this then all comes together at the meetings which are held at the school. Well, this one was the most bizarre so far and I didn't find out until later why. Apart from the first one a year ago when the Paediatrician came nobody medical has been involved and I was hoping the enuresis nurse would come but she couldn't. The lead professionaly is the school nurse but it has been a different one every time so I have to go back over the history every time. I arranged for someone to come from Parent Partnership who are a support structure for Parents who need a bit of back up with the school system and as ours are refusing to accept a professional Educational Psychologist report that states Megan is clearly dyxlexic and has slow thought processing I thought they may be able to help as I felt I spent the whole meetings defending myself. "Because she doesn't do that at school" or "well she is fine at school" is all I get. But I didn't reallise the head had got upset about that and it wasn't until half way through a very random and disorganised meeting that she said that and then it all went downhill from there. So later that afternoon at pick up I went to find the head to apologise to her if I had upset her to be met with the stoniest wall you have ever seen and that is when backed into a corner she admitted she didn't think anything was wrong with Meg. I had taken some recordings of Megs last homework tantrum where she shouted for hours about the school and her problems but unfortunately and very frustratingly dropped it down the loo the day before so now it won't work, but she said she is fed up with this supposed evidence and wouldn't have taken any notice of it anyway because she DOESN'T DO IT AT SCHOOL.

So if anyone has any ideas how to make Meg change colour when she reacts to purple and green spots so they can see it I would be most gratefull as I am at stalemate with the school. She only has one more year there before she moves on to secondary school so it isn't in her best interest to change school as she isn't good with change and socialising and I don't think I would have the patience to home school so I am kind of stuck at the moment. I forced Meg in today as she was feeling sick so I hope she vomits all over the classroom!!!!!!!!

[nicoleh]

hi Charlie,
commiserations. I'm sorry to hear you're having such a hard time. life is definitely easier if you have a label for the problem.

I wouldn't have the patience to make my kids sit down at the kitchen table and do (home)school work every day either. there is another option however, one that we have taken - we unschool. There are varying degrees of same - from "radical unschooling' which we don't do, and just child-led learning. You could do a little googling and have a read. I am one of the world's most disorganised people but I'm finding we do really well with this - and I have three to contend with. My 2 'unschooling' kids are way ahead of their grade level in almost every area (ok, DD1's handwriting is atrocious, but hey) despite me not requiring any formal school work. they want to learn and explore the world - without bribes or punishments they do it of their own free will. and no, they're not unusual children!

The number of parents who are pulling children out of schools here because their behaviour AFTER THEY GET HOME is melt-downs, tantrums, tears and nightmares all the time - it's big. Usually the problems don't manifest while at school so the teachers don't see it (or they ignore it). lots of these kids have some medical or learning issues, many don't. I'm meeting lots of them at homeschool gymnastics and swimming and park days. and I've yet to find a single one who has any regrets other than not doing it sooner.

so anyway, people often tell me that they wouldn't have the patience for it, and what they really mean is that they enjoy not having responsibility for their kids all day. You don't seem like that kind of parent, and since you raised it yourself, maybe you don't mean it that way. So I thought I'd mention that there are other, less patience-demanding options that you could consider, if you really do feel stuck. Information for you to ignore if you wish!

[ukbill]

Mmm would an early breakfast of sweet foods do the trick do you think? been as its a timing thing?

Stupid Head teachers is quite common I'm afraid

One told me that my eldest child Robert was just "thick" after he had been at his school for 4 years and was still on maths questions he could do in his head before he started at the school.. a couple of weeks later he called me to say a teacher at an other school had been chatting to Robert at an inter-school event and phoned to say what a charming and highly intelligent child he was!

He said "Maybe I have had Robert wrong all these years!" DRR anyone spending 5 min talking to Robert could figure out he was bright and intelligent only he just could not read or write!

He is now an expert computerisation installation engineer for Caterpillar / Finning working all over the world on bleeding edge technical developments.

As a result of his Dyslexia he still only has the reading / writing age of a 7 year old!

[ukbill]

I will not start on how racist and stupid a couple of Welsh head teachers have been, when my children were moved into Wales by their mother.

Wales is a semi autonomous part of the UK where they keep their own language and the schooling is diabolically bad only no one can say so for Political correctness reasons.

Almost all Welsh students have to sit an extra year at University to learn how to read and write in English before they can start their Degrees..

They are lied to by the schools who tell them they can do any degree in any UK university in Welsh! I heard teachers in secondary school say this! it is a blatant lie, there is NO university in the UK (outside of Wales) that runs ANY course you can sit in Welsh!

Sorry as you can tell I am still very angry about this

These politically correct idiots are destroying so many children's chances of a good education and life.

All they seem interested in doing is in producing more bigoted myopic individuals like themselves!

OH dear it seems like I have ranted a bit! But I can prove everything I have stated above.

Its Funny I live in a country called "The United Kingdom" however the only people in any way united seem to be the English we do not discriminate against Scottish (they vote on our laws we cannot vote on theirs) and the Welsh who are institutionally racist. Irish people can come to the UK and vote in our elections (from southern Ireland without becoming UK citizens) we cannot ever vote in Irish elections even if we became Irish citizens!

Seems a all bit unfair to be honest.

Little wonder the Political party called the National Front, EDL or UKIP whatever they are calling themselves this month (all bunch of racist thugs) and their like are getting ever more votes in UK elections, the English people are getting fed up with all this and are turning ever more Nationalistic, and just see what happens as a result.. anyone remember Yugoslavia?

[charlie]

Feel better now Bill?

[colormist]

I do believe that school just admitted to feeding your child food that they knew to be toxic to the child. That makes me wonder how many other parents have having just as many issues with that school as you are having. In the states, they would have lost their damned job.

I'm furious. You put your trust in that institution and believed they were concerned with your child's welfare. Then they got an do the exact opposite of what they said they would do. This not only damages her development mentally and socially, but undoubtedly caused a massive issue with your attempt at a proper diagnosis. Clearly you were not accounting for the f*ck*ps at school when dealing with her diet and wellbeing at home. WTF.

[nicoleh]

yes, I'm very glad I'm not going to be dealing with an institution with my fructose free baby! I reckon I spend less time 'schooling' them than I would dealing with a school's stuff-ups - or trying to prevent them at the least.

[jejns1]

Hi All,

I have not posted in quite a while and when I found this post today, it fits exactly what I have been dealing with at my kids school. My son is 14 yrs old and daughter 13 yrs old.
My 14 year old son got back last Friday from a 4 day class trip to Quebec City. I had filled out a form with the dietary restrictions Ethan has to follow, even though the school already is aware of them, and yet his only choices on the trip were to eat what was given and pick out what he could safely eat or nothing. A three course meal at a fancy restaurant was a one course meal for him and they would not give him extras of the safe food. And I am not convinced much was safe anyway.
I have reached the end of my rope with the lack of seriousness that the school, their friends and friends parents give the diet my kids have to follow.
It is as Charlie said, because they can't see it or they react later at home, it must not be true.
We are fortunate that we were able to get the kids in with a doctor here, London, Ontario, who belives there is definitly something going on with Carbohydrates/Sugars. He took many
tubes of blood and there is a follow up appointment in September.

The next school year, which starts in September, will have me going full on with making the schools and friends take this seriously.

Has anyone lese run into this with their kiddos. My kids friends giving them candy, pop, etc. even though I read them the riot act. Unfortunatly my kids still like the taste of sugar, especially my daughter, so this makes it even more frustrating to deal with.

It will be a maddening few months for sure, but I will win this battle, come hell or high water.

Thanks for letting me vent.
Janice

[nicoleh]

HI Janice,
do your kids have HFI (or does that seem likely)? if so, does telling the school that sugar causes liver damage and potentially may be fatal help?

so glad my dd hates sweet things, I really feel for your kids.
Nicole

[ukbill]

Much better now thanks charlie sorry for the rant everyone! sometimes things just get to me in the early hours of the morning

[jejns1]

Yes, the presumptive diagnosis for now is HFI. The Research Doctor said there is definitely something going on with carbohydrate metabolism and they are going to try find out which one. He also said it may be a mutation that has not been found yet, so we will see in August.
I like you suggestion to frame it as a liver failure problem in order for the schools to take it more
seriously. I will be putting together a new letter and information sheet over the summer vacation so I can deal with it as soon as school stats in September. Thanks.

[nicoleh]

I read an old post on here - I think it might have been tammy's - in which she suggest that you go up to the school, preferably with a medico of some sort, and make sure to use the words "poison, liver failure, coma and lawyer". I LIKE!