Meg update

[charlie]

Hi folks,

sorry have been quiet for a while
A) cos computer so geriatric it takes hours to do the simplest thing and
B) to be honest not had anything to say.....

Anyway, had interesting few months with megs and especially with her school.

Melatonin has been my saviour, she goes to sleep within half an hour of taking it so bedtime is WONDERFUL. The only drawback is that if she takes it too early she wakes up in the middle of the night and can't get back to sleep then at 1am this little mouse tip toes downstairs and starts rummaging in the cupboard and finds the chocolate stash or hot chocolate powder.... Mum (not a massive fan of chocolate anyway) now has to make sure there is none at all in the house - or set tripwires to wake her up!!!!

However, school, well where do we start. Still can't manage to give her milk mid pm to keep her going so going to have to rethink that, refused to acknowledge that she was still blanking out and not doing anything sometimes. Well, her report came through yesterday and in every subject, when she is on form is great but will sit there blanking out and not even writing a word and is below average in every subject. Now I'm not expecting an einstein but to talk to she is a bright switched on kid so obviously something is wrong still. I did suggest that the nanny I have (who has to come at 11 am to cook her food and deliver it to school 3 days a week so she has a proper lunch) could maybe stay on at school and support Megs with her work and make sure she kept topped up with milk. Oh no, can't do that, she might become too dependant. WELL AT LEAST SHE MIGHT BE ABLE TO ****** WELL GET SOMETHING DONE oops, sorry to shout!!!! and it wouldn't cost them a penny, I would finance it. they do have a classroom assistant but she doesn't seem to remember to do it. So far every year at their school they have had a new teacher to the school, newly qualified so it seems to take them half the year to get the hang of megs, by then she has missed loads of stuff. The trouble is if I change to a new school I take her out of her comfort zone and maybe just jump into a new set of problems. I have thought about home schooling but I can't really afford to and i worry about the lack of social interactions etc.

One idea that has been suggested tho is ADHD. We got referred to child mental health assessment mainly cos the school were blowing their top about her attendance - personally I think she has done well to do what she has done 83% attendance but they are having seizures over her late attendance (49 late mornings - could be more but she snuck in sometimes). Now they are heading for ADHD - when we had our first appointment Megs was not on a good day, we got ushered into a very boring office which wasn't child friendly at all, and they barely talked to Megs in the hour we were there. She proceed to empty my handbag (tampax and all - sorry gentleman to make you blush), climbed all over me, tore up tissue, chewed it up and tried to stick it in various places and tied my boots together. yes, on that performance I would suspect ADHD, but is that accurate. She certainly has attention and confidence problems but hyperactivity?? Well, maybe her no sugar diet keeps alot of triggers at bay and looking it up she may be more ADD. Bearing in mind she goes off her rocker with glucose...... Maybe they are on the right track. Has anyone else had this as a suggested diagnosis. Then maybe where I am looking for a food trigger and eliminating more and more from her diet it is actually something else. The only plus is that if this is right then she may be entitled to more back up at school. After all they have an autistic kid who has supervision one to one from the moment he enters the school to the moment he leaves..... one rule for one??

As for the hospital, good old NHS doesn't change, still no feedback from fructose and glucose challenge done last summer and no feedback from EEG for epilepsy done 6 weeks ago - inspite of numerous phone calls from annoying obsessive parent....

We are heading for 6 weeks summer holidays so I want to use these to assess her a bit at home with her work and moods etc.

Anyway, enough waffling, thanks folks I think I have let off sufficient steam. Normal activity can resume

[ukbill]

Have you had her "statement'ed"?

That is what got the Autistic kid the supervision.

Suggestion,

Dr Lustig goes on about how Fructose without Fibre hits the body (liver in particular) very hard and how eating Fruit is fine because of the fibre in the fruit.. as opposed to eating the fruit Juice which is not good stuff to drink.. apparently.

Well it has never been good for me anyway being HFI

However the thought occurs I have a large bowl of breakfast cereal (2 x Shredded Wheat, 1/2 cup porridge oats and 1/2 cup puffed wheat and 1 1/2 teaspoons of Non-digestible plant fibre 500 cc semi skimmed milk (half fat in USA speak))

This gives me a good slow burn release of energy which lasts for hours..

If in her lunch you added some of the same stuff it might slow down the release of the energy to last the afternoon out?

I bought my current stock off ebay when the Doctors stopped being able to get it on prescription without it being Flavoured and sweetened

The stuff is called Psyllium Husk I got it from this listing.. (OK its for a years supply you might want to try smaller amount to start with.)
Ebay item number 270688342810
Ebay company "thespiceworksteam"

Hope this helps

[charlie]

Thanks Bill, I'll look into that stuff. The problem with her diet is that is high glycemic so something like that may help. The metabolic specialist is going to contact dietitians at Kings hospital as apparently they deal with HFI alot?? Can't be any worse than current dietitian whose sole input after 4 dietary diaries being sent in is - you're doing a good job and we will do some blood tests - but no ideas.

As for Statementing, I'm hoping that maybe that is what this new set of referrals may help with. The trouble is they are cutting back and the process is getting harder and as the SENCO teacher is still not even getting the basics of Megans problem then i think we may be on an uphill battle. It is such a shame the school didn't organise their funding around trying to keep their current teacher for another year as he has been very switched on not just with megs but a couple of other kids too and it would mean he could focus a bit more on helping them from the start. i don't think 7 changes of teachers in 4 years is a sound basis for early education???!!!! After all, all the other years have all had continuity.

Never mind, can't cry over spilt milk, at least they seem to be on board now so watch this space. She did win her running race today with her lovely long legs.

[hfimomof3]

can she not pack her own thermos of milk to drink in the mid-afternoon? Where I live, you would use the disabilities act to negotiate for the right for her to pack and drink her thermos of milk at let's say 2 pm. There could be adhd too but I would not discount that you could have issues with her being hypoglycemic in the afternoons.

Also it sounds like she is on a diet that eliminates more than just fructose? I forget her situation but it is already so hard to eat a balanced diet without fructose-containing foods that I am wondering how you do it if you are eliminating more than that? I woudl agree with ukbill that eating some fiber with lunch might help her. Do you have weetabix there? I sometimes eat a bowl of weetabix with milk and it is a nice high-fiber snack.

[ukbill]

Hi Hifimomof3,

Weetabix in the UK has added sugar.. Shredded wheat has none.. in Australia its the other way round! DOH!

I presume no added sugar where you live either?

Only problem is they both have high levels of Digestible Fibre which breaks down in the intestine into Sucrose.. and so inflames the bowels.. leading to eventually IBS..

Yes I know I eat quite a lot of digestable fibre in my Breakfast.. but I got to eat something.. the alternatives are all fatty. (Bacon, Eggs etc.)

Guess what I've got???

Hence the Psyllium Husk and Colofac I take every day to stop the "gut rot" spasms.

[charlie]

Hmm, milk in a flask, now you would think by providing her milk to the school each morning would then make it easier for them to give it to her. WRONG!!!!! I have tried all sorts of methods. I send her in with small milk cartons which hold about 1/3rd pint, 3 a day, one for the morning, one for the afternoon and a spare. they started by putting iit in the school fridge and giving it to her so it stayed cold - that lasted a month at the most. Now it is very hit and miss. they rarely take it out of her book bag in the morning so by the afternoon it is warm and probably off. I have tried little freezer flask bottles too, they work occasionally. The problem she isn't quite old enough to just get up and get it herself unless she is really low or feeling very sick then she knows to ask for it but by that time it is too late.

This is where I get frustrated with the school. It is a very small school - 85 pupils in the whole school age 5 to 11. there are 28 max in a class of combined 2 years. next year there will only be her year so 18 in the class but this doesn't mean they will have more time to do things like her milk. she was in a single class when she was 7 and they still couldn't manage it. This is why I need to rethink it.

There is also the problem that it makes her stand out if she has to stop and drink milk which is something she is only just becoming aware of and a few kids being kids have called her a baby as she needs milk.

so that is why i have to rethink it all. As Bill says weetabix has sugar in it here, I tried her on shredded wheat but she is realy sensative to fructose and they are made from wholewheat which is higher in fructose.

[hfimomof3]

Oh yeah I remember being called a baby for drinking milk. It doesn't sound like the school is very supportive. The right thing for them to do would be to remind any child who called her a baby that she has a medical condition and this is just what she needs to do to manage it. For your part you should just keep reminding her that doing what she needs to do for her health is not babylike but actually adultlike, that she is a strong person who is learning to manage her condition, and that it is wrong for others to judge her over something she cannot control.

Of course the school should be giving her the milk she needs in order to stay at a proper glycemic level. Are there any laws that you could use there? Here, if that happened, you would go in with a copy of the appropriate act of congress and highlight the sections where it explained that the school is obligated by law to do what is needed. I would encourage you to go over to kidswithfoodallergies.org because, even though you are not dealing with a food allergy, the issues are similar and there are a lot of people there with experience in how to get schools to do what is needed.

Yes the weetabix here is not very high in sugar.

[kim55]

Does it actually have to be milk? I often pack mozzarella cheese sticks when I think I might need something to eat at a meeting or conference and everything they are serving is sweet. I also sometimes take them when I am working with groups of children. I bring fruit for the kids and cheese sticks for everyone. All the children I know like to eat them, so it doesn't have the same connotation of "baby" that drinking milk has. They come packed in plastic here and they do fine for one day without refrigeration as long as they don't get too warm. A more expensive option here is the small Babybell brand cheese rounds that are coated with wax; they keep well too.

[ukbill]

"Yes the weetabix here is not very high in sugar."

I checked today I think the UK version is about 8.5% sugar.. at least the Asda (Walmart) version is anyway.

If they can make it without added sugar in Australia then why not in the UK???

Likewise our Shredded Wheat is no added Sugar but in Australia it has about 5% added..

Crazy its like they don't want each country to have too much good safe food.

I still take baby bell's and other wax covered cheeses if I'm going on a long walk or if I'm doing anything that includes heavy exercise.

I get annoyed if my children eat all my snacks when I cannot eat theirs..

[charlie]

Thanks for the suggestions guys, I have tried various cheese things as nibbles, sometimes she will eat them , other times not, she isn't a huge cheese fan unfortunately and if I try a babybel once and it is too strong then she won't try anything like it again fora long time. I must also admit to limiting any processed type cheese as the chances are the longer the list of ingredients the more likely something bad has slipped in.

Snacks at school are difficult, they do seem to get these ideas in their heads and run with them without thinking outside the box. they recently attained their healthy schools badge by pushing the fruit only at breaks and lots of veg and fruit at lunch. Well yes, for some that is healthy but not for a few - like megs. They did concede to a sandwich at break time but nothing else. so if I have run out of bread in a morning and i send her in with a packet of crisps she has to sit inside to eat them!!!! so she would rather not have the snack and risk her blood sugar plummeting.

They start the day at 8.45 then have a food break at 10 am. then lunch at 12pm. then they have no other top ups till they come out at 3pm. so in the afternoon when most are likely to have a blood sugar crash they have to keep going. so they see it as a major deal her just breaking off to have some milk. Now if she was diabetic they would legally have to deal with it, but HFI - whats that? Which brings me back to trying to organise my own help in the afternoon to support her, but how do you avoid your child standing out too much from the crowd in this modern cruel world whilst keeping their life balance even.

Bill, thats tough, you'll have to find hiding places for your snacks. i must admit I spend so much time shopping for megs food I forget to buy things for me!!!! And if I dare to eat her crinkle cut crisps - well I don't hear the end of it for days!!!!!!

[ukbill]

I should think so too .. I'm with Megs on that one, Thief!

Not sure how to keep megs blood sugar up all afternoon.. I remember the problem well as a child.. if I had sports then any lessons afterwards went by in a fuzzy painful haze.

My only suggestion is to try to get some high protein food into her at lunch time with perhaps some non-digestible fibre in the meal to help slow down the digestion to make the energy release slower and last the afternoon through.

I wonder if the finely ground Psyllium Husk mixed in with some flour and cooked into cheese / Marmite cookies or straws if eaten with her milk at lunch time might do the job?

Worth a try.. cannot see it causing problems.. so long as you don't go above 10% Psyllium Husk and she has a drink with them.

[hfimomof3]

That is very frustrating. It sounds like the kind of thing where there should be a law! What would the school be obligated to do by law if she were diabetic? I wonder if you can get access to that law (if it exists) with a doctor's note. She ought to have an exemption from the fruit and vegetable requirement because they are medically contraindicated for her. Can you write to your statae representative (whoever made the rule about nothing but fruits and veggeis) and describe your sitaution and ask them to change the state rule so that kids can get a medical exemption?