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?

there are no tests in the womb to diagnose EDS and no blood tests or similar to diagnose it in a smaller child

Lottikins Mon 25-Feb-13 12:02:45
"She said all hers suffered with the condition from 11 right down to the baby. "

That doesn't mean they were all diagnosed shortly after the birth of the first child.

And even if they were, the condition is highly variable. Most people will not find it stops them from leading a rich and full life. Some people sadly do.

Does it not occur to you, Lottikins, that it's just possible that they were all diagnosed after only one of them was? That perhaps, just perhaps, the oldest one was the one who gave the clue and had the first diagnosis, after the others were born? Possibly not the 10mo, but certainly quite likely the other 2 children in between? As has been said, they don't come out with labels on.

But you carry on with your judgemental unhelpfulness. I'm sure the OP is thrilled that you have posted on her thread.

Why do we never see these comments about irresponsibility on threads about breast cancer- another condition that is known to be genetically determined? And is also fatal. Why aren't people suggesting that it is irresponsible to have a child if your mother has had breast cancer?

We did not know dd1 had eds till she was 3. That was when dh was diagnosed.we were told it was 5050 chance another child would have it and ds1 did then we had more tests and I was diagnosed as had had dis and pain.

We then had dd2 and ds2.

We are not selfish people, we love our children.

Don't rise to it, ariane, please ignore.

We already know ds2 has it as he has had a dislocation and also has pectus excavatum (chest prob that dh,dd1 also have to do with eds).

Dcs do have pain yes but they are happy as well its not as if they have no quality of life whatsoever.It is hard but it does not mean they shouldn't be here.

Thankyou Thumbwitch.

Theres lots of shitty diseases and problems any of us can pass on, i have a whole load of family diseases i can pass on to DD, these include, hearing loss, eye sight loss, diabeties, cancers, early age strokes, dementia, knee problems, my family has a whole list of things, my DD could have got from birth until her end of days, doesnt make me a selfish person.

Ariane Is coping amazingly with poorly children, and with that dedication, theres no reason they cant grow up and have a normal life, Ariane is certainly not selfish.

Just ignore, ariane.

Noone can know when they conceive a child whether that child will find life worth living or not. Some people overcome horrendous pain to lead rich and wonderful lives. Others fold at the first sign of adversity and think life isn't worth living.

If we felt obliged to guarantee our children a happy and trouble free life, nobody would have any. It isn't lack of trials that makes life worth living.

*ariane58 you don't have to justify your decisions to have your children to anyone, much less one needling ratbag on the internet. I'm glad your DH didn't respond to his mother-let's hope it is the beginning of a new approach from him and you all get a bit of peace from MIL.

Lottikins Mon 25-Feb-13 12:27:30
"'We did not know dd1 had eds till she was 3. we were told it was 5050 chance another child would have it

so you knew before the other 3 were even conceived that there was a 50:50 chance that each one might have a life of (in your own words) daily pain?"

I keep trying to explain this but you are not listening.

The 50-50 chance of inheriting the syndrome does not mean a 50-50 chance of experiencing daily pain, because for most people the syndrome does not cause daily pain.

The fact that it did so for ariane's children is sad, but not foreseeable. And even she can't know it is for life; ds was in pain and then got better.

I have the syndrome; I get a slightly sore wrist if I write by hand. I spent a year having to write with my left hand as a 10yo. Hardly a lifetime of suffering.

Ds walks over a mile to school every day and then plays a vigorous game of football. Again, he has the syndrome.

All I will say is that yes,we were aware they might all have eds.yes it causes them pain and yes we had 4 with eds.

They have got each other, they will grow up understanding how the others feel, they will help and support each other.
They will learn to deal with difficult situations and being in pain is horrible.I know that.

They will grow up to be considerate and kind.Things will not be easy but it might make them appreiciate things more than others.

One thing I'm sure of is they won't grow up to be unkind.

DD1 has JHS (the same as EDS, just a different name) and has a lot of pain; DD2 has EDS and no pain (except when she faints and sprains something - the fainting is from a related condition to EDS); DD3 is very hypermobile, but doesn't have a diganosis, and no pain. I could probably get a diagnosis, but have very little pain; my DM could certainly get a diagnosis, and has a fair bit of pain.

You can't tell how someone is going to be affected, just because they have EDS/JHS.

"Things will not be easy but it might make them appreiciate things more than others."

I think this is true of dd. I was watching a video clip of her dancing in a theatre show the other day -this was the child who used to have to crawl to get to the loo and asked me to close the windows so the neighbours wouldn't hear her cry out in pain. She absolutely lights up the stage! I know noone with such a capacity for enjoyment.

Hindsight is a wonderful thing, but Ariane is not gifted with it, but i doubt, she would change having her kids, she sounds like a truely dedicated parent.

Ariane I think your amazing, and with the support you give, they could lead a great life, and thats down to you being there through thick and thin.

If I could go back in time and knew what I do now I would still have had them.

They are my children and I love them.they are not perfect-who is?

I hate to see them in pain but with the right pain medication/physio/support their eds and other conditions are manageable.Hard work but manageable.I fully expect them to lead fulfilling and worthwhile lives.

No, Lottikins, but she is not the one who may go on to have her child's full and interesting life either.

When you conceive a child at risk of inheriting EDS, you cannot know how much pain (if any) that will cause them.

And you cannot know if they will grow up into the kind of person who finds life not worth living because of pain or the kind of person who finds life so wonderfully exciting that the pain won't matter that much for them.

It is not for me to say whether my dd's life is worth it or not if the price she has to pay is pain. It is for her to say.

And dd has repeatedly said that she would not hesitate to have children herself.

Yes actually I do, so does dh. We are not as severly affected as dcs but we have pain due to eds too.

Dh dislocates his knees DAILY due to eds but he goes to work and tries his best.He has good days and bad days but he does not have a terrible life.things are just more difficult for him.

My pain as a child was put down to 'growing pains' and my jaw dislocating a lot was just a mystery to the doctors.

You can say what you like Lottikins to try to justify your point of view but it seems nobody agrees with you.

You think about all the bumps in the road, the para Olympians have had to endure in their lives, and they have done amazing things.