I am looking for advice on my 10yr ol... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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I am looking for advice on my 10yr old sons Raynauds.

Jill68
Jill68

My 10yr old son has recently been diagnosed with Raynauds, he has had bother with 'blue' fingers, toes and lips since he was 2 months old! He also gets a lot of mouth ulcers. Recently he has been complaining of numb feet (which are very white on the soles) and his skin is very mottled. His arms and legs seem to get very cold as well as his hands and feet. I have read that Raynauds is very rare in young children and that there could be an underlying problem - my GP didnt seem very concerned but obviously as a mother, I am. Can anyone offer advice or should I ask for him to be referred to a specialist?

12 Replies
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SEE AN RHEUMATOLOGIST, DO NOT WAIT. THE FACT THAT THE BLUEISHNESS IS SHOWING UP IN HIS EXTREMITIES IS ALARMING IN ITSELF. ALSO MOTTLED SKIN IS A FACTOR OF POOR CIRCULATION. POOR CIRCULATION RESULTS IN A LACK OF OXYGENATED BLOOD GETTING TO THE FINGER AND TOES. GP'S ARE WORTHLESS, THEY DO NOT SEE ENOUGH AUTOIMMUE DIESEASES TO ACCURATELY DIAGNOSIS. TAKE YOUR KIDS HEALTH INTO YOUR OWN HANDS. IF YOU CAN'T GET INTO A RHEUMATOLOGIST VERY QUICKLY AS THEY ARE REALLY BOOKED UP, GO TO THE EMERGANCY ROOM AT YOUR NEAREST COUNTY HOSPITAL..THEY HAVE SEEN EVERYTHING AND WILL BE MORE WILLING TO LISTEN TO WHAT YOU THINK IS WRONG! DO YOUR RESEARCH BEFORE YOU GO. LOOK-UP EVERYTHING ON RAYNAUDS, SCLERADERMA AND ANY OTHER AUTOIMMUNE DISORDER WITH THE SAME SYMPTOMS. BE PREPARED TO FIGHT FOR WHAT YOU THINK IS WRONG AND DON'T LEAVE UNTIL YOU'VE SEEN A RHEUMATOLOGIST...YOUR CHILDREN DESERVE THE BEST POSSIBLE CARE.

Thanks for that, you are right about children deserving the best possible care. I live in the UK so will contact my GP tomorrow and tell him that I would like my son referred to a paediatric rheumatologist asap.

Make sure you stress that you need the referral to a Rheumatologist that has knowledge of auto-immune/connective tissue disease. He may just have Raynaud's and nothing else but there are simple blood tests that the specialist can run to see if the Raynaud's is secondary to something else. Make sure that he keeps his body warm, and to wear light gloves and socks all the time. The best thing is to prevent the attacks if possible, damage is done to the capilaries each time there is an attack. So even though it may be strange and he may not want to do it, if you can get him to wear gloves and socks as much as possible. You can get silver lined gloves from the main RSA sight and they have fingerless ones as well, that he could wear at school. Hope he gets into see someone soon.

MARCY
MARCY in reply to uknlv

Very good advice, the gloves are important. I never used them (I live in TX), so I have suffered a tremendeous amount of contractures. The more you can keep his blood flow normal, his hands warm and the circulation moving, the better chance you can curb the contractures. Daily massages with lotion, yes, that will be hard to do, but make it a game...anything to increase circulation. And the specialist in autoimmune disorders is MOST urgent!!!

ONE MORE THING, go with your GUT, it is always right! Call it Faith, The Holy Spirit, Karma, The Universe, whatever you prefer. But LISTEN!

Jill68
Jill68 in reply to MARCY

I didnt think about the massage thing, I have to massage his little brother as he has excema so massaging lotion into one more child shouldnt really be a problem. Thankyou for your response, definitely going with my gut.

Jill68
Jill68 in reply to uknlv

I took him to see my GP, who checked back his old notes when I mentioned that we saw a Paediatrician years ago, the letter from the Paediatrician mentions Raynauds but was never mentioned to me!! He has been having 'blue' episodes for years but I was always just told not to worry and to keep him warm. I must admit it has only been recently that he has been complaining of numb, sore feet. He has been very good at wearing thick socks and gloves recently (as the weather is getting colder). All his pulses, B/P and heart are fine and my GP suggested putting him on to a pill that is prescribed for adults with Raynauds, I was not happy to do this without speaking to a Paediatrician first so a referral has been sent to the hospital. If I am not happy with Paediatrician I will definitely insist on him being seen by a Rheumatologist. Will also look into the silver gloves. Thank you so much for your reply.

MARCY
MARCY in reply to Jill68

So sorry to hear 1 more physician has dropped the ball when it came to diagnosis of an autoimmune disorder! It happenes more frequent than we would like to believe. Shame on your GP for not confirmig with the ped's doctor and looking into this further back in the beginning. Stay strong, keep researching and look-up this medicine he wants to put your child on for side effects. You child shouldn't have to pay the price for his oversite!.

Hi go with your gut.

Also prevention is important keeping warm wearing gloves, hat, scarves, layering clothes. Putting his cothes in the airing cupboard the night before, so his clothes would be warm to wear the next day. Often find that air conditioning in shops is a problem. With raynauds its often the slight change in temperature which causes an attack. So exercise is quite good idea, also make the school aware of his condition, so he can his gloves for outside sport. Also have you visited the raynauds and schleroma website, there is a link to on this homepage.

Jill68
Jill68 in reply to bookworm

Hi, yes I found the website last night, thats where I found out that Raynauds was very rare in young children. He refuses to wear a vest so I have laid out a T-shirt for under his school shirt tomorrow. I have started warming his clothes on the radiator in the mornings. I am just now really concerned that as this has progressed over the years that it is only going to get worse as he gets older. He is now starting to realise that he has to help himself as well, like keeping warm rather than trying to warm up when he gets cold - prevention is better than cure! Thank you for your response.

Please include him on all the information you gather. He will need to be in on what he needs to do to prevent flares and pain. Make it like homework, looking for different websites, The Scleraderma Foundation and other autoimmune websites that have alot of information for new people. He will llearn he isn't alone and ther is a jr. high kid on this site I read today!

hi my daughter whom is only eight was diagnosed with raynauds just last year and she suffers with it alot when it is cold ,her hands and feet really hurt they go blue and red than she gets pins and a lot as well.when her hands are cold and she catches them on on somthing she screams out in pain .but ive only heard about elderly people havin it not children .thats why ive jjoined this site its help full to know theres other people who have also got children with the same thing.

Jill68
Jill68 in reply to roberts1

My son is the same although its all year round for him, even in the summer. I took him to my GP who referred him to a Paediatrician on 17th November, we have an appointment for 8th December, really pleased that he is being seen so quick. My GP told me to buy him leather shoes to keep his feet warm, its ok for him the wages he is on, I cant afford leather shoes at the rate kids grow! He wears thick socks, sometimes with thin ones underneath and a hat, gloves and a buff, he now recognises that he has to keep himself warm outdoors and indoors. I asked for a referral to a consultant as my GP wanted to put him onto tablets that I know nothing about and I also read on this site that Raynauds is very rare in young children. You should insist on a referral even if it just puts your mind at rest.

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