Sticky Blood-Hughes Syndrome Support

13 year old son with possible Hughes

Hiya, I have hughes syndrome and have been diagnosed for 6 years now. Tom, my youngest son, 13, has had livedo for ever really but of late has had chest pain, nose bleeds lasting half an hour, petechia and ecchymoses, pulled ligaments both knees and now purple freezing cold right leg. They are querying raynauds but with possibly something else such as Hughes underlying.

He was admitted overnight Friday till the purpleness and icy cold limb came back to life then discharged with a plan of orthopaedics and rheumatologists. I have asked for him to see great or mind street cos they deal with these problemsmore and the local doc said Tom has no symptoms of Hughes....mmmm???

Grateful for your thoughts zxxx

Much love

Ally xxx

2 Replies

Hi Ally, I'm sorry your son has'nt been well, it must be very worrying for you.

I would think you need to persist in getting docs/specialists to listen to your thoughts & fears on this, tell them to test him as it will at least set your mind at rest whatever the outcome, I know it would me.

If it isn't then great, but if he has at least he his caught with it before any other symptoms apear. I dont understand there way of thinking.....'lets wait until we get an episode before we test!' surely it's better to find it early!

Hopefully he hasn't and its just us seeing things because of ourselves worrying for our children, I know I'm constantly watching my son, hoping not to see any more symptoms than his pins & needles in his feet .

Good luck & best wishes to you both.

Sue xx


Hi Allyson

welcome n glad you found us. I hope we can help. I know how you feeling about your son. I suspect my son may have autimmune condition as he suffers fron chronic hip pain, headaches, back pain, allergies, and hearing issues. Hopefully as my doctor says it's nothing to worry about but is prepared to test and refer, trouble is he has autism and is petrified of needles and docs in white coats so hangin fire till can get him through this. I really hope your son is ok, but do push for testing and referral.

Take care gentle hugs love sheena xxxxxxx :-) :-) :-)


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