Our SN area is not a substitute for expert advice. While many Mumsnetters have a specialist knowledge of special needs, if they post here they are posting as members, not experts. There are, however, lots of organisations that can help - some suggestions are listed here. If you've come across an organisation that you've found helpful, please tell us. Go to Special needs chat, Parents with disabilities, SN teens, SN legal, SN education, SN recommendations.

Moose here - again. Following on from my epilepsy thread.

(639 Posts)
moosemama Thu 14-Mar-13 16:45:40

Hi folks, we were up to 995 posts, so I thought I'd better start a new thread

LeonieDelt Sun 31-Mar-13 09:56:44

Happy Easter everyone. xx

CouthySaysEatChoccyEggs Sun 31-Mar-13 19:58:11

Happy Easter. DS3 loved his free from chocolate that I made a big egg, mini eggs and lollies from. His first ever taste of chocolate.

Free from dairy / nuts / soy.

Cost £26 for enough to make one standard sized egg, some lollies and some mini eggs though! shock

Worth it to see his face. grin

How is Easter going for you?

CouthySaysEatChoccyEggs Sun 31-Mar-13 19:59:40

The chocolate is made from rice milk. It's lush though. It's got bits of freeze dried strawberries in and he's lucky I haven't stolen it all!!

LeonieDelt Sun 31-Mar-13 20:55:19

well done re the egg. some things are worth it no matter what the cost.

I'm making it - struggling with lots of things, not sure i want to talk about it any more cos i'm just running up post count and boring the shit out of you guys.

With any luck, i should have my head screwed back on straight by time school resumes, but i gotta make it til then. And i dont look forward to it.

LeonieDelt Wed 03-Apr-13 14:22:08

bad week, last week, from the pushchair onwards. Horrible weekend. Have lost so much weight - i'm down to 150lbs, i was 168lbs/76kg - i'm not trying, its just happening. i'm not hungry. i'm not talkative. When i go quiet, its usually bad sad

The stomach thing got so bad i thought it was cardiac - it is RIGHT in the middle of my chest, and up towards my throat. I hurts - there's no "burn" in my heartburn, its heartPAIN. Two GPs (out of hours, and the good GP at our surgery) say its GORD/reflux, and hiatal hernia. I'm praying they're right. When it plays up, my heart starts skipping which frightens me - they say its anxiety causing the extra systoles. Last week they were so strong it was like a horse kicking me in the chest - while i tried to walk (cos of nicked pushchair), carrying bags and backpacks, and tried to keep DD2 out of traffic...

Its been a rough time. I need to build my confidence back up - i'm scared to go out with the kids, afraid in case one of these spells of palps start back up. GP told me what to do but DD2 is so difficult...

Am still having seizures, but they seem so mild compared to thinking you're going to have a heart attack at 36... i'm not even "obese" any more fgs.

DD2's behaviour has been so off the wall bad, its hard to cope with her.

I hope you guys have had a good holiday and that everything's going peacefully.

CouthySaysEatChoccyEggs Wed 03-Apr-13 23:59:54

Your not boring me. I'm just ill. And despite the illness, I thought it would be a bright idea to take 4 DC's to the Science Museum. In London. On my own.

I need my bumps felt or something...

DC's are ok bar loads of actually minor meltdowns though I did have to go overground from the tube to the museum rather than through the tunnel. DD only elbowed one person encroaching on her personal space on the tube (which is very good for her).

I'm happy that the I creased dose of Gabapentin seems to have held most of the szs at bay - only had 3 small ones this week, first week of any, as I was due on.

Feel like poo though, going to London has given me an asthma attack, all wheezy like Darth vader. Going to have VERY painful joints (more do than now!!) tomorrow, probably be wiped out for days now.

CouthySaysEatChoccyEggs Thu 04-Apr-13 00:03:55

I hope it is 'just' anxiety, Leonie. I get what you are saying about the epilepsy being secondary to your heart things.

What is the issue with your DD2? Maybe I've got some suggestions? (Probably not, as I'm crap with sorting issues with my own DC's, so unlikely to have many of the answers for someone else's!)

LeonieDelt Thu 04-Apr-13 16:44:18

DD2 is struggling with the lack of routine. Melting left right and centre. Constant complaining, bitching, refusing, etc. Once the hols are over, all will be good again.

The heart stuff is scary cos its my HEART yanno. But that said, i figured out a huge piece of my puzzle is actually my sternum itself - swollen, painful to touch, and responsive to painkillers! therefore MUST be costochondritis, and not cardiac pain! Yay.

And breathe.

I am feeling a TON better. Yay me. I had bloods done today, and they looked for so many things i dont even know what they all meant. I mean, what's Gamma G anyway? I know what hba1c and the LFTs and TFTs and CBC and all that is... My blood pressure was NORMAL!!!!! 126/86!

The girls were fragile X tested (and others, thyroid, iron, whatever) today. TRAUMA ensued but after some My Little Ponies and a trip to McDs for ice cream, all is just about forgiven.

All without a pushchair. And we survived!

My bus pass came, after we left, naturally. I'm not quite sure how i feel looking at it - like a fraud tbh.

You went where??? By yourself? You madwoman! Well done, anyway. Hope you guys had a nice time.

Sorry to hear you're ill. Get well soon couthy! Hope all is ok in the Land of Moose.

LeonieDelt Thu 04-Apr-13 17:43:25

I need my bumps felt or something...

Took me a few tries to "get" this one.

I get it now! Lightbulb moment! Phrenology! We'd say "you need your head examined." to mean the same thing.

Aaah, english. You funny little language, you.

Chocolatemoosemama Thu 04-Apr-13 20:15:02

Hi, sorry have been awol.

Last week I was very low with horrible period and back to back migraines and my CRPS has been pretty hellish since it was manipulated by the physio last week as well.

Been a bit better since dh had 4 days off over Easter. Managed a short trip to a local farm to see the lambs, piglets, chicks and calves on Tuesday and them took the dcs out for the afternoon with dh yesterday, as he had the afternoon booked off. We had to do something as we have the damned nursery bear this week and need to put something over and above pj days in the diary!

Unfortunately I have paid for it today. Had my first episode since the 26th last night and literally could not get up this morning, I could barely wake at all. Dh had to feed the dcs before he went to work, then plant them in the boys' room with my laptop to watch back to back Pokemon episodes while I tried to wake up and be capable of looking after them. Eventually managed to peel myself out of bed at 10.00 am, but only made it as far as the sofa, where I have been all day. God bless my lovely dh for having made the dcs all packed lunches or I'd never have coped.

So a pj day all round today and I am for my bed very soon, as can hardly hold my head up or keep my eyes open.

Am definitely seeing a pattern of them occurring after several nights of poor or disturbed sleep and also when/if I am daft enough to eat anything sugary late at night. Last night I had a pack of revels at 10.30 am, the time before it was iirc some Ben & Jerry's ice cream.

I also blame myself for stoopidly saying to dh last night that I seem to be doing better episode-wise, having gone over a week without so much as a hint. I should have known I was tempting fate.

Saw our old vet, who agreed that palliative care and watch/wait is the best course of action with the dog, given her age and general standard of health. Unfortunately, she then became seriously lame on her offside hind leg and was in a lot of pain. Rushed her to the vet expecting a ligament or joint problem, perhaps as a result of slipping on ice in the garden, only to discover that the pain is actually at the top of her shin and could well be a secondary. She's on a week of anti-inflammatories and painkillers to try and work out if it is an injury, but six days in and she still won't put it to the floor. She's happy enough in herself - still eating well and chasing her toys - just on three legs instead of four, but gets very upset and restless late on in the evening when she is due her overnight dose of painkillers. Vets want her in for an xray if she is no better by Monday and to be honest, she won't be because there has been zero improvement so far. Not sure what to do now, xray means day patient treatment, which is what we were trying to avoid with surgery, as she has poor sight and is almost deaf and I really don't think she'll cope. Vet did say that if she is going to have a general for xrays, they may as well excise the tumour at the same time, but it just doesn't feel right. Dh has an appointment on Monday evening to discuss it all with the vet and decide what to do, so I guess we'll have to have some serious discussions over the weekend. sad

Other than that, ds1 is being a nightmare with all this unstructured time. Easter weekend was really hard going with him, better the last couple of days while we've been out and about but absolutely bloody awful today, just when I really couldn't cope with the chaos he creates. He's not well himself either, having horrible digestive problems again and now seemingly passing blood - can't get a straight answer how much and haven't actually seen it myself but it has pushed his health anxiety through the roof and we are back to constant hand washing (which of course has caused his eczema to flare up) asking if he might have touched or ingested something poisonous and checking if x, y or z imaginary symptom means he has been poisoned or caught something terminal.

It's his birthday next week and he's so ridiculously excited about that, plus stressed at getting his room ready for his best friend to come to tea, plus doesn't do unstructured time, plus all the stress of upcoming SATs and it being his last term at his current school next term - that he is just in freefall really, beyond stressed and not coping on any level.

LeonieDelt Thu 04-Apr-13 20:48:09


Poor pooch!!! I hate to hear about any animal in pain. I hope you come to some arrangement that suits everyone and is as humane as possible. I dont envy you, and you have every one of my sympathies.

Oh, your DD1 and my DD2... they'd make an explosive pair i suspect! lmao. Poor fella, passing blood is not cool. I hope it turns out to be nothing.

Sugar? That's a very interesting coorelation... Very interesting. Have you had a diabetes check?

You'd have been proud of my health-anxious DD1 - who had a blood tests and only cried a little at the pain, no worrying or drama or anticipation! Then again, as i went first, hours earlier, it helped.

moosemama Sat 06-Apr-13 13:59:48

Thank Leonie.

Things have taken a turn for the worse. I got the day wrong for her follow-up, it was this morning. Dh took her and they rushed her straight in for emergency xrays and possible op while she's still under. Last night and this morning we kept finding spots of blood on the floor where she'd been, but couldn't find a source for it.

Vet who saw her this morning said her leg muscles have completely atrophied, which would suggest she's been off her leg longer than she has - which obviously isn't the case. Also very confusing as the vet last week didn't notice and he's an amazing vet. She Has limped intermittently on it over the past month or so, but we just assumed it was a bit of arthritis, given her age and the fact that she was still happily running around and chasing toys etc.

Another possibility is, would you believe it, neurological damage, but this vet found a big swelling on her rear leg, just below the hock, that runs from the back of her leg right round to the front and almost meets up again at the back. So after a week of anti-inflammatories and not using the leg at all the lump/swelling the fist vet found has actually got significantly bigger, which suggests it could be a tumour, but vet said could also be a fracture. confused

Basically, we won't know until they've done the xrays. We have to call between 5 and 6 to see what they found and whether or not she's going to be kept in. Bill for this is already at £200 and that's if they don't decide to excise the first tumour while she's under, then if they find anything they need to deal with there and then that could add significantly more. If she has to stay in over a weekend it's going to be £££'s that we just don't have.

Dh is panicking, because we've just bought all the boys' birthday presents (both birthdays are in the next fortnight) and to cap it all his team didn't meet their target, so he's not going to get his bonus, which would have been due this month.

Dcs all at Pokemon League with dh and I am on pins at home alone, have even ironed everything in sight to keep my mind off it. I was really looking forward to having a couple of hours to myself, but can't enjoy it now.

Our other do is really upset as well, he's whining constantly, keeps doing proper full on haunted howls and has planted himself on the bench in front of they bay window to watch for her coming back. sad

I've now done too much, can't stand on my bad foot and am completely wiped out, so can't keep active to distract myself. Think I might try and immerse myself in a computer game and see if that helps.

moosemama Sat 06-Apr-13 15:45:32

Vet called us - always bad news when they do that.

It's aggressive osteosarcoma with extensive bone destruction. Vet did say she would refer to specialists and they would be the ones to decide what/whether treatment would be appropriate, but that she would def lose her leg if we went for treatment. Also offered to do further xrays to check for secondaries, but finally suggested not waking her from anaesthetic.

Dh wanted to let her go, but I couldn't do it. We lost my beautiful boxer gsd cross to fibrosarcoma in almost an identical site, under near identical circumstances when ds1 was a few weeks old. He went in for limb removal, had xrays, found multiple secondaries and didn't wake him up. I have never really come to terms with it and he was definitely ready, whereas my girlie is still eating, being cheeky, chasing her toys and enjoying hugs - she's just not ready ... I'm not ready. sad

So, we're bringing her home at 5.30 and the vets are going to give her palliative care. I don't want her to be in pain, so she's going to be on tramadol and anti inflammatories, but apparently if she falls on her leg she could fracture it and that would be that. I'm guessing we have a couple of weeks at best. Vet said prognosis with this type of cancer is usually a few months max, but that given the advanced stage it would be much less for her.

I am worried that she will just be zonked out on the tramadol and if she is, we will have to think again about whether or not it's fair to keep her going.

I think I must have been in denial, because I am in shock, actually shaking and so many tears. sad

LeonieDelt Sat 06-Apr-13 15:58:35

Moose, i am so, so very sorry. all our love to you and your family. xx

moosemama Sat 06-Apr-13 16:55:39

Thank you Leonie.

We've just been to the pet shop and bought a lovely soft memory foam mattress for the bottom of her bed in the hope of making her as comfy as possible.

I am doubting myself so much re the decision to wake her and bring her home, but I guess I have to trust my instincts. I suppose we'll know soon enough if it was the wrong choice. sad

CouthySaysEatChoccyEggs Sat 06-Apr-13 17:23:06

(((Hugs Moose & Family)))

LeonieDelt Sun 07-Apr-13 08:07:06

I hope it was a peaceful night in the Moose and Couthy households.

CouthySaysEatChoccyEggs Sun 07-Apr-13 11:21:16

Peaceful yes, as DS3 is at his dad's for a few days.

Until DD woke me up as she wanted to go out with her 'friends'. Who haven't bothered with her at all for 5 weeks now - what's the betting that her 'friends' can't find anyone else who is free to go out with, so they call on DD as a last resort.

And no matter how I explain it to DD, she doesn't get it.

They treat her like a last resort.

Yet she has no social problems...

Why do the school not see that it isn't normal for a 15yo to only go out with their friends once every 5 or 6 weeks outside of school, they just see that she 'hangs around with' a group of girls at school.

But I feel that they just 'tolerate' DD hanging around the edges of their group, but don't make any real effort to include her in social things.

moosemama Sun 07-Apr-13 11:32:25

Not really peaceful here. Dd is unsettled by all the dog stuff and had us up three times in the night and ds1 is all over the place.

The dog had a good night though, slept right through and was still snoring - loudly - at 9.00 am.

She woke up when dh took the other dog out, had some chicken and her meds then went outside and brought dh her ball on a rope to chase! Came back in, went back to bed, then got up again to beg for the apple and pear cores when dh was making the dcs porridge.

She's been a bit whiny in the last half hour, but I think that's her meds kicking in and making her feel strange.

Am feeling better that I made the right decision now, as she is still full of life, despite her leg.

moosemama Sun 07-Apr-13 11:36:05

Couthy, teenage girls are the pits aren't they. It's vile the way they treat each other and it's so much harder if you don't have good social skills to start with.

That said, the boys in ds1's year are similar. Ds is often used as a last resort friend by many of them and he doesn't understand it when I try to explain either.

LeonieDelt Sun 07-Apr-13 20:21:25

Sorry i'm so quiet. I am struggling with some of the strongest anxiety i've ever had in my life, and it is bordering on full on proper agoraphobia.

I dont know wtf happened.

My bilirubin is 42, btw. No other elevated liver bloods but that one. Apparently i ought to look like a banana but i dont, not my skin, not the whites of my eyes, and apparently the reason, Gilbert's, could be why i couldnt take the lamotrigine - it is eliminated using the very process in the liver, glucuronidation, that my liver lacks, hence the buildup of bili.

And apparently starving/dehydration shoots bili up - which i've done al ot of in the last 2 weeks cos of anxiety.

And then the weight loss makes thyroid meds suddenly become too potent which makes a mess of everything.

capital le sigh. So, trying to re-balance my thyroid meds, keep sane, not jump off any cliffs, and keep kids busy for the next week - its intimidating to say the least.

And find a replacement for my cunting pushchair, argh! might have that one licked though, hopefully i'll know in the morning.

I wish to god i could sleep past 5am, and stop waking up sweating and heart pounding with worry - its not nice.

LeonieDelt Mon 08-Apr-13 17:02:30

pushchair sorted and in the post. thyroid meds lowered, and feeling much better. costochondritis better, somewhat. heart not skipping if I don't drink so much tea (!!!) so perhaps that's why it felt so awful. reflux still refluxing but it doesn't burn as much. hopefully with time...

come on school. I need routine back. I almost went crazy...

and then there's the appointments next week - neuro, bum man, bladder guy (which I think I'm gonna fob off due to being overwhelmed)....

I haven't had a chance to come to terms with epilepsy... I have my bus pass now but I feel like a fraud using it. ugh.

CouthySaysEatChoccyEggs Mon 08-Apr-13 20:26:21

Guess what letter I got in the post today?


I'm not sure if it was me telling the GP I felt he had been negligent that caused him to send off a referral, or the fact that the psychologist said that she felt the GP was being 'difficult' in labelling me 'non-compliant' for not doing a test that I can't get childcare for when there's an alternative...

(She went right downstairs to the GP's after our appointment, so maybe she had a hand in it?!)

Whatever way, I couldn't give two craps, I HAVE a neurology appointment in mid-June!

Not soon enough for DLA, but you can't have everything...

Now I need to work out what to say, start keeping diaries etc...

What should I write down?

Headaches as well as szs? When I feel drained in the morning? Whether my period is due? (As symptoms are always worse then).


CouthySaysEatChoccyEggs Mon 08-Apr-13 20:27:22

Glad pushchair is sorted. Hope you get your thyroid stuff sorted soon.

What are they going to do about your liver then?

CouthySaysEatChoccyEggs Mon 08-Apr-13 20:29:26

I still feel a bit funny using my bus pass too.

Logically, I know I'm 'entitled' to it, as the DVLA would sooner poke themselves in the eyes with sharp pins than give someone with szs that don't have a full dx, and have been there on and off for 9 years, and happen frequently a driving license, but still...

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now