When shall we three meet again? The not quite NT, not quite weightloss thread ......

[moosemama]

We were full up ladies, so we finally have our very own weightloss-ish thread!

glad the appt went well moose. do you have any thoughts yourself as to what might be behind it, might it be some form of hypermobility?

Hi TLP

Ds1 is another one who can be relied on to forget or lose something practically every single day. By some miracle we still have the same lunchbox he had last year, but in reality it's because the dinner ladies know it's his and one of the TAs is forever retrieving it off the wrong year's trolley!

The paed said definitely hypermobility, but cagey as to what type at the moment. Both he and I have lots of markers for Ehlers Danlos - my most impressive party trick is being able to fold both ears completely up and press them into the ear hole, iyswim. It really grosses people out! I can also place both palms completely flat on the floor without bending my knees and bend far enough for my forehead to be between my knees if my legs are apart. I had horrible problems as a pre-teen and teenager with my legs. My knees used to lock up and the only way to release them was by punching them really hard. I was supposed to undergo arthroscopy to nail the problem down, but was so scared of hospitals that I lied and told them it was better and didn't cause me problems anymore. Mum can't remember what the docs said at the time, but I can remember then drawing stick men running up and down my legs to show me where they wanted to cut my legs open from ankle to knee and knee to hip and ralign the bones - hence my fear and reason for lying.

I think my mum has it as well, she was in traction for a year and a caliper for longer as they tried to realign her hip. None of us respond properly to anaesthetic either, we all bruise easily and tend to take longer to heal than most people. My great grandfather (Mum's grandad) was also famous locally for being extremely stretchy and bendy, so most likely had the same thing.

I'm just hoping it turns out to be just the hypermobile one, rather than having any organ involvement. There's no genetic test for the basic hypermobile type of EDS, but there are genetic tests for the others.

Posting this as a double post - as it's massive, but I need to get it all out.

Epic fail carb wise yesterday and no weightloss to report today. Harrumph!

Have been to the inaugural Parent Support Group Meeting with our ASD Inclusion Team today and it was, er ..... interesting.

Two very highly motivated parents wanting to smash the system and change things for the better kind of hijacked the meeting and accused the poor Inclusion Teachers of getting them there under false pretences. They read the invite in a completely different way to everyone else. Several people tried to explain that whilst comendable, it wasn't actually the purpose of the meeting, but there was no stopping them - no way to even get a word in sideways.

At that point I had enough and told them to remember that there everyone there had their own needs, some have very young children, others older, some are still reeling from dx, others are old hands and some are just not in a place yet where they have built up enough fire in their bellies to fuel a fight with the powers that be, well at least not for anything more than getting support for their own child. I explained that most parents of children with ASD will get there at some point, but there were many parents at the meeting who aren't au fait with the system, let along it's faults and they are there for support, not fighting. I suggested we form a sub-group, using the support group as means of funnelling parents' concerns to the people who do have the power to change things using them to challenge policy and provision.

That worked, they didn't pipe up at all for the rest of the meeting and one of the other parents came up to thank me and to ask what I did for a living, because I am obviously a very good facilitator.

Truth, I was terrified, my heart was absolutely banging, my eyes filled up and my voice was shakey. I waited an age to intervene, because I was too damned scared to get involved, but I'm glad I did.

After that we had a coffee break and never went back to the meeting. I noticed there were a couple of other parents who had put down the same school as me on the sign in sheet and saw one of them sitting in a group of three, so plucked up the courage to approach. Turns out there were three of them there, all from our school, all with children who have ASD. They are all still in the infants though and it was slightly unnerving, as they all seemed to assume that because my ds is older, I must know more. Sadly it seems they aren't getting the support they need in the infants. I had hoped things might have changed for the better - and it is better than it was, but it seems the school still has a looong way to go before you could say its ASD friendly.

Also got to have a long chat with ds1's inclusion teacher, who was lovely as always.

I think it went well in the end, the fact that people got chatting means we will all be more willing to open up at the next meeting. Am quite looking forward to the next one now.

Unfortunately things went a bit pear shaped with ds2 last night. He spent over an hour crying on me, all sorts of worries and anxieties came tumbling out. Poor boy never complains, is so patient with ds1 and dd, he is the good boy in class at school, always tries really hard and everyone says what a lovely lad he is, but it seems he's been internalising all these worries and stresses all the time and he's now full to bursting with it all. It's almost as if being taken seriously by the Paed on Tuesday has triggered him to finally start telling us what's wrong.

He's struggling with his speech. It's always been a bit odd, he stammers quite a bit and often puts the wrong endings on things (eg I boughted a new game). Now he's become conscious that the reason he's not moving up a level in reading is because they aren't happy with his fluency. He is brilliant at expressive reading, but struggles to say the words out loud, so his reading is stilted. I think he's embarrassed about it and also concerned that it's beyond his control, it's not that he can't read the words, he just can't get them out of his mouth. He also told me that when he puts his hand up in class, it takes him so long to get the words out that his teacher just leaves him and moves on to the next person.

Some of this is, I think, related to the fact that he has been constantly interrupted and told he's wrong by ds1 ever since he learned to speak. He rarely gets a sentence out uninterrupted at home. Can't help thinking there's more to it though. He still reverses letters and numbers, can't tell a digital 2 from a digital 5, doesn't recognise letters if they are in a different font than he's used to. When working on online maths, he repeatedly enters the units before the tens when entering numbers, eg 81 instead of 18. (He just came to ask me what "this symbol" means on his maths homework and it was the letter J - as in the numbering of the questions from A-K.) He also struggles to understand simple verbal instructions and seems to get confused over the simplest things. It's all ringing alarm bells for me. APD, mild dyslexia?

I went to see his teacher after school to ask for a meeting to discuss everything he told me last night. She pressed to find out what the issues were and then stood there and told me that he is absolutely fine at school - no problems at all. She also said she'd get his other two teacher (jobshare) into the meeting as well and that means me, on my own with three teachers, one of whom happens to be ds1's awful teacher from last year - the one who refused to speak to me for the whole of the last term.

I have a feeling I'm going to be fobbed off by the teachers though, which presses my buttons, as no-one would listen to my concerns about ds1 either and he had to crash and burn before they even started to consider listening.

So, another one to add to my overflowing bag of guilt. I've been so busy getting ds1 assessed and statemented, all the time thinking 'ds2 is doing fine mentally, achieving well at school etc, so he's ok for now', that I've overlooked his needs. It's high time he was made the priority and we start to put his needs first. In fact its well overdue.

3 teachers , I take it DS2 is still primary age. something else I would throw in the mix as a suggestion would be visual processing difficulties, and/or Irlen's syndrome for you to look into. Sorry you are going through this worry with DS2, of having to get teacher to take you seriousl etc, must feel like groundhog day. I have heard good reports of Ian Jordan (Jordaneyes)Optician up in Scotland re:literacy etc difficulties/visual processing etc. Do you have any idea of who will be teaching your DS next year (in the hopes you can get them to take you seriously if this year is a washout). I suppose another thought might be to get a hearing test or even possibly look for SALT referral if you have concerns over his understanding in general.

Hi TLC, thanks for trawling through my warbling posts, it was more of a brain dump than anything, as I was winding myself up into a frenzy.

Yes still primary, he was 8 last week. He has his class teacher, plus two other teachers, who jobshare, for maths. Oh and another one for music and another for RE!

I did wonder about visual processing, ds1 definitely has issues with that, it showed up in his WISC IV results and at a normal eye check up at Boots. Ds2 was under the orthoptist, optometrist and consultant from when he was 3 until last October, but I suppose conventional testing could well have missed it? We are at the bottom of the Midlands so Ian Jordan seems a long way off. There is a BABO in a village nearby, but its £££s for the assessment and then £££s more for the treatment and lenses etc. I have agreed to get ds1 checked out though, it's actually in his statement that we will do it. Am going to get him referred to the eye clinic first, after speaking to ds2's consultant about him and take it from there if they draw a blank.

No idea for next year, I know absolutely nothing about the lady that is taking the next class up this year, not even her name and they tend to shuffle the junior staff around each year anyway. Won't find out until July.

I wondered about a SALT referral, but I don't think they're easy to get these days. I do know another mum at the school who was a SALT until she gave it up to be a full time mum and she knows ds2 very well as he's in her ds's class and they're good friends I might ask her what she thinks, if I can catch her.

He also told me last night (and again after school today) that they've moved his classroom round and it's really upset him. I asked why, was it because he's not sitting with friends anymore or something and he said "No, it just feels different - I don't really like it when things change it makes me feel funny".

I do think he has traits, but have always thought that most of it was from being ds1's younger sibling, I'm starting to think perhaps I may have been wrong on that as well now though. BUT he is very sociable and finds being sociable easy and is really popular, he is very empathic and kind, creative and imaginative, loves imaginative play and drawing etc, so if he is on the spectrum it's more mild and a totally different presentation than ds1. To be honest, it doesn't sound likely from that description though does it?

It does feel very groundhoggy, especially as it was the same school year as ds2's in now that sent ds1 into a downward spiral. I suppose I should have expected the teacher's reaction though. She completely brushed me off when I suggested he had hypermobility problems with his legs and told her he'd been referred - can't wait to feed back about that one at the meeting!

I lost the thread!

Will try and catch up (moose's mega posts - you are offloading like me!) but in the meantime, I am envisioning you in your swimming costume at a legoland hotel, having conquered the pool beastie and being all brave and uber confident.

Hope you are all having a lovely time and all the food stuff works out perfectly x

Well, I'm back and I survived ..... and I did go swimming. We went before breakfast on Sunday hoping it would be quiet and it was packed! Still, I felt fine in my costume an had lots of fun getting squirted by water canons and going down the slide with dd.

Weekend was great, despite a great deal of torrential rain broken only by slightly less torrential rain. We were all fine in our raincoats covered by mahoosive rain ponchos though.

Hotel screwed up royally, first by failing to refresh the lego prizes in the safe in our room, so when they boys finally figured out the clues to the code they were bitterly disappointed. Then the restaurant hadn't sorted ds1's meal, brought out the 'supposedly' head chef to talk through what he could and couldn't eat - his suggestion? Tagliatelle! then anything and everything else that had wheat in. A helpful waitress came with a coeliac sister came to the rescue in the end and arranged for him to have a separate stir fry cooked in a clean wok - but he was so disappointed, as he was expecting a special meal and to be able to go up again and again to the all you can eat buffet.

They replaced the missing safe prizes and gave all three dcs a treat bag with baloons and lanyards etc in and gave ds1 a lego board game to compensate for his meal disappointment, but as dh pointed out, it's a really poor show for a hotel that is brand new, designed around children and had been informed that we had a coeliac, autistic child with us. Dh is going to complain in writing and see if they will offer us anything else.

Oh - and they lost our suitcase when we came to leave. Which again affected ds1 really badly, because he can never cope with leaving and was already distraught. We had to wait half an hour while they searched and eventually found they had left in in our bedroom.

BUT the kids had a blast in Legoland itself and we got on really well with our friends - no arguments or tears and lots of fun and that's all that matters really.

On the downside, I am a whopping 158lbs this morning! Praying it's mostly water - but will admit to doing my best to get our money's worth at the evening meal and breakfast buffet. (In my defence, I did walk miles, pushing a very heavy pushchair up huuuuge hills .....)

Hope everyone else had a good weekend.

Wooooooooo!

But oh ffs, really with the restaurant? It makes me want to bounce off all four walls and the ceiling in rage on your behalf. They had two weeks frigging notice, then did nothing and offered freaking tagliatelle? [incandescent emoticon] sadly, if you are anything like me, you will boil in rage for days unable to do anything, and will then ignore it because to deal with it will be more upsetting. But don't! Please! It really really really isn't good enough. At all.

And bah to the prizes and the suitcase. I loathe this sort of low level pissery with businesses. There is just no need for it. It just smacks of poor admin and poor management, and poor supervisors. How hard is it for housekeeping to check the safe when they do the room for new occupants? It's their freaking job, for goodness sake. They manage to get the towels in there.

All that aside, I'm glad you had a good time, despite the rain! My sis used to have annual passes to legoland, and they used to go pretty much every weekend (Disney dad scenario with two dss's), but I've only been once, a looooooong time ago.

It's been nice here, and we put the deck furniture out (it's due to snow tomorrow lol, but y'know). Not warm enough to eat outside, but lovely to take a mug of tea and sit breathing in the pine as it all warms up in the sun! Very wholesome.

Dd1 seriously wants me to find out whether she can change schools for y8. the only reason being that one of her friends goes to the other school and has been trying to convince her. it's much smaller, and a lot of the kids who do go there end up leaving in grade 9 to go back to the high school, as there are less options, and teeny classes (if they stay) etc. I did mention it to parent of said friend, who rolled her eyes and made non-committal noises in a 'really, don't bother' manner. It's a catholic school (we aren't) and I'm sure v lovely, but doesn't run on the same holidays as the public school system, etc etc. which means we then need to look at the other two, which seems a bit daft on behalf of the only blooming nt child...!

Ach, I'll make a phone call and ask some questions. Tomorrow I'm spending about six hours in a car with the other mother, so we can hash it out between us then!

My weight was exactly the same on Friday, but I have raging pmt, so was expecting nothing less. I had better be two pounds down this Friday...

Dh has said that he is going to write a formal complaint letter and email them as well. Quite apart from anything else, this weekend cost as much as our annual summer holiday for 5 people to go to Ireland, so it should have been perfect!

Just been called over to see ds2's teacher, only to be told they don't want a meeting with me because they have already met to discuss him and decided they have no concerns, therefore he's fine!

In my usual hopeless at confrontation way I then tried desperately to explain hypermobility and its implication in a playground full of parents to a teacher who made the right faces and noises, but quite obviously really couldn't care less.

Came home and discussed it with ds2 again and he said his maths teacher told the class before Easter that some of them are moving up a group, but not specifically who. This has made him panic after the whole moving up for a day fiasco in Y2, hence the stress out. The thing is, they did a maths assessment the one day he was in the week before Easter, but was really too ill to be there. He had to do that assessment, plus one he'd missed when he was off sick the day before. The poor boy had an undx'd chest infection fgs, so he didn't do very well and was pulled out of class last week to work through the paper again with the TA. So, it now seems the assessment was to decide who should move up and as he got a lower grade for that than he did on his Y2 SATs, I doubt he will be going anywhere. Guess which teacher was at the root of all this confusion - yep - ds1's teacher of 'I'm not speaking to Mrs Moosemama fame' from last year.

School move sounds a bit of a pita for you, especially if she may well want to move again in a years' time and the holiday differences etc. It's difficult though, because sometimes you feel like you need to do things that the nt ones want/need as well. Hope you can work out what to do on your car journey. Wherever are you going that takes 6 hours?

it should only take 4 hours... but you can never tell - 2 hours there and then obv back again. we're going to visit a guide camp for a site orientation prior to brownie camp in two weeks. it is in the middle of frigging nowhere about 100k along a dirt track, or something ridiculous. she has volunteered to drive, for which i am eternally in her debt. neither of us have the faintest idea where we are going... but we have a hand drawn map with lines on for roads, and a few arrows.

my more immediate problem is that every other leader (apart from the one that doesn't come and doesn't tell me, and i can't rely on anyway) has had either a last minute or pre-planned disaster and can't make it tonight. even the youth one.

and i postponed a parent helper until next week yesterday because it was all looking hunky dory and i know i can't make it next week, so wanted to make sure they had plenty of adults.

i guess i'm about to e-mail all the parents with a begging note. i need at least two or i have to cancel.

oh, moose, school sound quite the pita at the mo. any chance of the TA realising his maths result was due to being poorly and standing up for him?

well done dh for taking the bull by the horns. tis the least he can do and frees up your headspace to fret about the rest.

Hello!
Hope all is well, trip went ok yesterday. The camp is indeed in the middle of nowhere and it was a grey rainy day, so driving along dirt tracks was fun... This morning it is snowing but it was forecast, so no biggie.

Actually slept last night lol, so feel quite strange! Faintly refreshed, but def wooly! I drank a bucketload of water last night, so am now wondering if lack of sleep was partly dehydration again. I must remember to drink more water.

Is everyone back at school today? Hope you are all recovered after the trip!

Hi, glad your trip went well and you've had a good night's sleep.

Yesterday afternoon I asked ds1's teacher, who just happens to be head of KS2 about my problems getting ds2's teacher to have a meeting in private with me to discuss a few issues and she went to speak to her on my behalf. Not as Head of KS2, but going along the lines that we have a good relationship because of ds1 and I asked her advice. Saw ds2's teacher this morning and we have a meeting on Friday after school. (The boys are off tomorrow for polling day and she's off on the annual string instrument concert with ds2's class this afternoon, so Friday was the soonest she could do.)

Ds2 managed to lose his blooming tickets for the concert somewhere between the classroom and home (all of about 500 yards ). There was I waiting for them to come through, thinking 'blimey, they're leaving it a bit late to hand them out', then found out everyone else had them over a week ago! He swore he'd given them to me, but I am absolutely positive I've never even seen the envelope. Checked at the school office and he'd definitely signed for them, so it wasn't that they were given out on a day he was off sick either.

Came home and turned the house upside down - no luck. Called the venue and bless them, they offered me free replacement tickets straight away. I then realised that the school might have kept a record of seat number allocations. Checked and they did, so called the venue back and they've reprinted our tickets for us to pick up when we get there. I am so relieved and really pleasantly surprised, as I expected them to say, your mistake, your problem and make me pay another £20 for new tickets. It's such a shock these days when you get good quality customer service.

Lots of reports from ds1's teacher about him being all over the place this week. He's still crying regularly about having to leave Legoland and when he's not doing that he's shouting out in class and being generally disruptive. He had an hour with his inclusion teacher this morning where they discussed the shouting out, came up with some strategies to help him stop doing it and even produced a reminder card. Unfortunately, he then went back to class and shouted out no fewer than three times in the next five minutes. I'm sure it's just a case of him needing to settle back down again after Easter and Legoland, but the disruption of polling day, followed by Bank Holiday Monday really isn't going to help.

Right, must go and make tea for ds1 and dd and think about getting myself ready for this concert.

evening all. feeling tired and grotty, not quite sure why. hohum. 12 stone 10, so slowly getting there. But away this weekend which may not be great for the diet.. Lamb seems to have vanished, hope I haven't chased her away [glum]

sorry that Legoland cocked up so spectacularly, you are damn right to complain, as surely Legoland can only justify charging £££££ for providing excellent family service. The cluelessness re:medical diet is scary. hope you enjoy the concert!

lamb disappears and pops back when she feels the need, so don't worry. she used the thread a lot until she got to target weight, but comes to cheer us on. no need for glum.

you are doing well, tlp. slowly but surely!

glad you have your meeting sorted out, moose. and yay for the theatre!

i think your ds1 and mine might be in synch at the mo. fortunately the paed rang and reminded me he has an appointment next week, which is had forgotten about , so i can ponder what i need to ask...

are you going somewhere exciting at the weekend, tlp?

i had to call the bank and defer our mortgage payment for two weeks. hey ho. i just want our tax rebate to arrive, lol. i could kill dh for not bloody asking hr when payday was and trying to work it out himself. why is he so blooming stubborn? it's not like it's an unusual question to ask when you start a new job, is it?

fairly important really, isn't it, in case they do anything grim like pay a month in arrears. Glad you have sorted out a mortgage extension, anyhoo.

Sorry about my wobble re:lamb, have had some ahem interesting experiences on quiche threads in the past, shall we say.

Oh and DRINK MORE WATER! This isn't the first time that dehydration has cropped up (stern glare).

i know.

TLP, we are a lot nicer than a quiche.

Lamb will pop her head round the door soon I'm sure. She's a skinny minnie these days, so doesn't need the thread for dietary purposes.

Sorry you are feeling out of sorts. I don't think the weather is helping much, its so dark all day with all these rain clouds constantly hanging around.

Concert went well, it was lovely to see all the little faces concentrating so intently on their own instruments and it all coming together as this amazing music. There were over 300 children playing at once, most of whom are total beginners.

Unfortunately, ds2 suffered badly all the way through from being sat on the top tier with his legs dangling down. It was horrible watching him struggle and try to deal with awful foot cramps without getting into trouble or looking obvious. He obviously couldn't get comfortable and was constantly sliding down his seat, curling up and sitting on his hip or hugging his knees. He was also coughing a lot, so it looks like we need to go back and get his chest checked again.

We didn't get home until gone 10.00 and ended up picking up chips on the way, as ds was starving and dh and I hadn't had any tea. So he didn't get to bed until 11.00 and by that time was sobbing that his legs hurt and he was too tired to walk up the stairs.

Good job it's polling day today, he's still in bed at the moment and I doubt he'll surface before lunch time, which is what he needs really.

Been up all night with a migraine. Ebbing away now, but it didn't help that dd2 wasn't feeling well and so spent the first half of the night in our bed. So my niggling headache that I had all day was at throwing level at about 4.30 this morning. so I'm wrung out, and no boot camp for me today.

Glad the concert was lovely, moose. Things like that always make me want to cry. Ds was great to manage though, especially being so uncomfortable. Everyone in this house is coming down with a nice spring cold, so it think it's the time of year for germs to be out and about again. hope he gets a good sleep.

I'm making dd2 go to school. Not sure if she'll stay all day, but she doesn't even have a proper cold yet, just a slight sniffle and a grump.

We aren't a quiche. well, I don't think we are!

It wasn't even our thread, and there were loads of us in the beginning. We got abandoned, didn't we moose?

Right. I'm going back to bed for a couple of hours. Hopefully I'll be a bit more lucid by then and the words won't be doing bibbly bobbly things on this here iPad!

Chips. there's a diet food for you.

Migraines are the pits. Hope you feel better soon Madwoman. My best advice is to take two cocodamol and sleep it off.

well looks like our next mission is to have more fluids then madwoman! hope you feel better soon.

moose - glad concert was good, shame that your DS was uncomfortable, it's bad enough as an adult keeping still when in discomfort at these events, never mind.

on the plus side, I have lost another pound, now 12 stone 9. On the minus sign at my wits end with the DS and soiling situation (have thread in SN about it)

TLP you are doing really well with your weightloss.

I think what you're losing is finding it's way to me - I daren't weigh myself this week.

Haven't seen your thread. Will go and read.

Up now.

The school dd1 wants to go to just called me to arrange an interview and woke me up... But I do feel much better, so am having some lunch and lots to drink.

Will check out the soiling thread, tlp. It abso-freaking lutely does your head in.

I lost the thread! We were on page two of the diet and weightloss section.

Dreadful week foodwise, also had the most horrendous period with delightful accompanying hormonal migraine and spent most of the weekend in bed. Had to go out today, as there was a big uni reunion lunch thing with everyone bringing their dcs to meet one of our friends new baby, who no-one had met as she's been in and out of hospital since birth due to cranio facial problems. Just about managed to get through lunch, but am way beyond exhausted now.

Ds2 seems a lot happier knowing I have spoken to his teachers and fortunately the meeting went well, even if there were two rather obvious staged door knocks - the first so that the scariest of his teachers could get involved and tell me he just needs to man up and the second right on cue to end the meeting within half an hour. BUT after spending a few minutes trying to browbeat me without first listening to what I had to say she seemed to suddenly realise that I might not be the demon parent I have been made out to be by her job-share counterpart and actually started being helpful. We now have a plan of action to support ds in becoming more confident to speak up for himself with teachers and classmates and they also have a temporary list of things to put in place to make him more comfortable until he has his first physio appointment and I can get some more specific advice.

Also had a few lightbulb moments regarding the whole hypermobility thing and managed to get my mum to remember the details of my own medical history relating to it.

It seems they were initially going to put me in a double hip cast, then decided they needed to do something more drastic and had plans to break both my thigh bones, plus cut me open from hip to knee and knee to ankle on both legs and pin and realign my leg bones from top to bottom! I was by this time around 13 years old and obviously horrified by the prospect, so when they sent me in for arthroscopy in preparation for the main op I lied and told them I didn't get pain in my legs anymore. They had a quick meeting and decided that if it wasn't causing me pain, they couldn't justify carrying out an op that would leave me with extensive scarring for life - particularly as, being a girl, I might want to wear skirts in the future!

Also found out my Mum's ortho history. She was in traction for a whole year while they tried to straighten out her hip (coincidentally the same one that dislocates on ds2 and I). She was then in a full leg caliper for a further year after than while her hip and pelvis recovered.

Sooo, we are obviously genetically well shonky in the leg bone dept.

The another lightbulb. I was told the lesions on my brain look more vascular than MS, but are MS-ish in location - hence the working dx. So, could they be related to EDS? I have the pale super-soft skin with clearly visible veins, extremely stretchy and floppy ears, resistance to local anaesthetic, easy bruising, slow wound healing and hypermobile joints - all markers which apparently back up the dx scale.

So, it seems I need to get in touch with ds's paed, update him with all this and ask if further investigation into the possibility of EDS is necessary. Bit scary, because if the lesions did turn out to be EDS related, I would be high risk for ruptures and aneursyms and so could the dcs, so they would all need to be tested.

Hope you are having a nice weekend - was it this weekend for Brownie Camp madwoman?

hello! did eat more and exercise less than normal over weekend away, so put on 2lbs, gah. So need to get back at it. Sorry it's been a trying week(end). Glad that you are getting somewhere with school re:DS2.

After hearing that description of what they wanted to do to you surgically as a teen I completely understand why you preferred to put up with things as they were, sounds dreadful. does you mum think the traction etc she went through helped her in the long run?

I don't know much about EDS beyond the fact that there are different forms of it (massive long thread on SN board about it), some with wider ranging implications than others. Sorry you are having this extra worry to deal with.