To be so angry at comments about nurofen/calpol

[ariane5]

My 4 dcs-dd1 (11), ds1 (6), dd2 (3) and ds2 (10ms) all have a genetic condition EDS causing them pain on a daily basis.

Ds1 also suffers from migraine requiring painkillers and all 4 frequently get viruses and infections (usually throat/ear) that gives them extremely high temps.

Ds1 has been very very poorly for the last week, temp up to 104f at one point and I thought he would have a fit it was terrifying but we got it down eventually with nur/calpol.

Dcs physio recommened these medicines for the joint/muscle pain they all get and gp always says to give calpol and nurofen even today adjusting ds1 dose to try and stop his temp going so high.

MIL has always made comments that my overuse of painkillers is the reason the dcs catch every bug going and are such sickly children.

She said it again today and I just lost my temper then cried. She is making out it is my fault then went on to say they are all on anti b too much as well. I have had enough of it-she is talking rubbish isn't she?

MIL is adamant these painkillers are causing dcs ill health but the gp/physio/consultant wouldn't keep telling me to use them surely if they were contributing to the problem?

I have anger issues Greg!

Pessary You might have found an outlet, i just need the exercise.

Bring it on Greg

She sounds delightful. I don't really have any experience or knowledge about the EDS and painkillers - apart from the obvious that you don't want your kids in pain. My DD does get recurrent ear infections and at her last GP visit the very nice GP suggested giving her a daily probiotic drink (yakult type thing) to boost her immune system (she reasoned the antibiotics were stripping out the good bacteria and thus leaving her open to a recurrent infection - she had 3 in 3 months, was clear for a couple of months, then 2 in 6 weeks). I did this for a couple of weeks and she has been infection free since - might be worth a shot?

Some people cling to the comforting idea that everything in life is very simple, despite all evidence to the contrary. In your MIL's case, she seems to be holding on to 'Oh, just stop the painkillers and everything will right itself'. It is of course a cowardly cop-out, as unlike you she doesn't have to face the reality of your children's conditions.

My SIL airily informed me and DH when we were terrified DS had a duplex kidney and might need major surgery that his prophylactic dose of anti-biotics was the devil's work and would cause him health problems in future. Easy to say when you don't actually have to weigh up the risks of giving them vs not giving them and make major decisions to protect a small child as best you can. Lazy, unkind bollocks.

I don't really know what to suggest, I just wanted to say I completely sympathise and your MIL should really just keep quiet. No idea how you achieve that though.

and your MIL should really just keep quiet. No idea how you achieve that though.

Industrial strength Gaffa tape might work.

I had considered probiotic drinks but ds1,dd2 and ds2 all have milk allergy and I couldn't find one they could have. I think the benecol one is dairy free? But I'm sure it was not suitable for unnder 5s(not sure why) I will check.

MIL phoned dh yesterday but he didn't answer his phone.I think he's just had enough of it all.Finally.

It won't last Ariane, sadly. :(

"Last weekend I was told NEVER to tickle ds2 feet as if you do that to a baby under a year old they will have a fit???" In amongst all the other gems of shit, this one stood out for me - really? WTAF? Well my DS2 is only 4.5m and I've been tickling his feet pretty much since he was born - oddly enough, not a single fit has he had yet! I wonder why... let's see, could he be incredibly lucky? Or, could your MIL be an asinine bitch who spouts the first bit of crap that comes into her head without thinking about it and obviously believes the umbilical cord was never cut between her and your DH?

I'll go for the latter.

Please try and keep her away from both you and your DC and I really hope your DS1 gets better soon - sounds awful for him, poor lad. :(

Oh lottikins - HOW in fuck is that helpful? What a bitchy comment!

Lottikins, what a dreadfully unpleasant thing to say, and quite gratuitous. OP is looking for help with a MIL situation, not views on whether she should have had children at all. You should be ashamed of yourself.

Lottikins - you know fuck all about the OP's life apart from what she has posted here. You have no clue when they found out about the EDS. So keep your foul opinons to yourself.

Have reported that trolly post.

Lottikins Mon 25-Feb-13 11:21:36
"I think it is very selfish to have 4 children knowing there was a good chance they would get a heriditary condition which would cause them constant pain "

I don't need EDS to dislocate my jaw at this one!

a) How do we know that the OP and her dh even knew they had EDS when the children were conceived???

This is a syndrome that has only been understood in recent years; most middle aged people have been diagnosed as adults, often when their children develop problems in their pre-teens.

b) Not every child will inherit EDS: out of 3 biological siblings I am the only one who has it, but both my dc have it. So my younger brother (and his son) should never have been born then, because of me?

c) There is no knowing that any one person who has it will actually develop a problem. I have it but used to make a living doing manual work.

d) Some people only have symptoms for a short period in life. Ds had a period of joint pains between the ages of 9 and 11 and is now symptom free, would that be reason for him not to be born?

e) Even people who suffer pain can have an interesting and worthwhile life. Dd may have made a couple of impulsive suicide attempts in a panic but once she came to her senses she said very clearly that she does not want to die because she finds life worth living.

What am I doing feeding a troll?

I'll go and shoot dc instead.

You'd do better shooting the trolls, Cory!

EDS is still often only diagnosed in young adults, isn't it? I have a friend whose DD was diagnosed in her 20s a couple of years ago. OBVIOUSLY she should have known before her DD was born that she was going to have EDS, despite there being no apparent family history of it, and not had her.

A few years ago there was a survey on the Hypermobility Forum on how long people had had to wait between first asking for medical help and finally getting a diagnosis. C. 50 % of the people surveyed had had to wait more than 10 years!!!

Dd was only diagnosed when her younger brother was 4 years old- so a bit late to start asking ourselves whether to TTC or not. This was also when my mother and I realised we had the syndrome- I was then approaching my 40th birthday and my mother was 72, so definitely too late to worry about our conception.

I think people who know nothing about SN often assume that all babies come out neatly labelled, not only with "Baby has This Condition" but also with "This Is How It Will Affect Their Invidual Life".

Lottikins Mon 25-Feb-13 11:56:30
"After the second and third child was born with the condition, most people would have had an inkling that it was a distict possibility that subsequent children would inherit it too. "

Are you not reading the posts? EDS is not usually diagnosed in babies. And for most people, it does not cause the horrendous problems it is causing for ariane's dc. I have it and I am fine. My ds has it and he is fine.

Lottikins you are still talking out of your arse, quite frankly, as you (again) have no clue when the OP's children were diagnosed.
Try for some sense.

For those who know nothing of EDS, typical times of diagnosis are:

the 7-10 years growth spurt

puberty

first pregnancy

middle age

this is because pain will often flare up when extra strain is put on the body