To be so angry at comments about nurofen/calpol

(164 Posts)
ariane5 Thu 21-Feb-13 22:51:14

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?

GregBishopsBottomBitch Mon 25-Feb-13 13:04:36

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.

5madthings Mon 25-Feb-13 13:05:22

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.

ariane5 Mon 25-Feb-13 13:09:07

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.

Reported posts which were breathtaking in their insensitivity to a woman coping with 4 children with pain

5madthings Mon 25-Feb-13 13:10:23

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.

Good luck Op, you sound like a great caring parent

5madthings Mon 25-Feb-13 13:11:42

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!

ariane5 Mon 25-Feb-13 13:23:31

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)

5madthings Mon 25-Feb-13 13:41:08

Thankyou lovely, are there any other symptoms i should keep an eye out for?

ariane5 Mon 25-Feb-13 13:43:46

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

5madthings Mon 25-Feb-13 13:52:12

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.

5madthings Mon 25-Feb-13 13:53:42

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.

ariane5 Mon 25-Feb-13 13:55:20

Yes def get checked as physio/hydro/orthotics etc all make a difference.

Good luck

Thumbwitch Tue 26-Feb-13 02:02:52

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).

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