To be so angry at comments about nurofen/calpol(164 Posts)
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 wonder how many people might have this mildly without ever realising or being diagnosed?!
But then I suppose some of the symptoms are common to other conditions, or just "growing" as well, aren't they? I know I had a fair amount of leg pain growing up and I used to get this horrible feeling behind my kneecaps, as though I had an elastic band twisting round itself (like those balsawood planes with elastic band propellers, iykwim) but I don't think I've got EDS. Just weak crappy joints (and ginger hair).
Yes def get checked as physio/hydro/orthotics etc all make a difference.
And yes its his legs he gets pain in and he is quite clumsy. I shall keep a diary i think and make an app to get him checked.
Hmm he does get tired, he had kawasakies disease when younger and was tired for months after tgat.
I just read eye problems can be common? It listed isdues with blurred vision and seeing double/cross eyed which ds3 is also being monitered for. He is due to see the optician again next mth as his eye muscles are weak and he cant always focus very well.
My 4 get a lot of pain particularly legs and severe fatigue.
Dd1 has got a v painful lump on neck shoulder but her PE very uneven (depressed severely on l side) and she is growing unevenly and it hurts quite a bit.
She has pots which makes her dizzy/faint so watch out for symptoms like this as its all related to eds
Thankyou lovely, are there any other symptoms i should keep an eye out for?
Could def be eds related if also has pain, worth checking
Pm if you need to I am happy to go through everything and help if I can. On sn board thers an eds thread (I used to be on it loads but not so much recently)
Yes the op was mentioned but they said ds3's isnt serious enough but to moniter as he grows.
They did not mention eds or any other issues tho!
Good luck Op, you sound like a great caring parent
I just checked ds3's red book and it is pectus excavatum. On the midle of his ribs itgoes in. Looks very odd, drs saud not sevre enough for surgery but to watch/moniter as he grows he is now 8. No-one me tioned any related conditions? Isthis something worth checking... He moans about achey legs at night, i said it was growing pains sorry for hi jack just wondering if i should get him checked ovet.
Reported posts which were breathtaking in their insensitivity to a woman coping with 4 children with pain
Yes it is pectus excavatum and is related to eds. Dh dd1 and ds2 all have it but dd1 has it very severly.
She is seen at GOSH in the cardiothoracic clinic. There is an op that can correct it.
Dd1 also has PoTs (causes fainting dizziness and related to eds and causes her a lot of difficulties.
ariane your mil is vile as are certain other people...
Ignore ignore ignore.
Can i ask re the chest/rib issue my ds3 has a funny dip in his ribcage, it looks really odd and drs have commented on it and monitered it.. They didnt msntion it may be related to other conditions tho.
I am surd it had a name like pectus excavatum... Maybe it was something else...he is very bendy and flexible.. Hmm.
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.
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.
And dd has repeatedly said that she would not hesitate to have children herself.
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.
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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.
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.
"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.
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.
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.
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.
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