Raynauds

[Lisa17]

Anyone out there with a child who has Raynauds?

[SVBO]

Hi my daughter aged 10 was diagnosed one year ago. How can I help?

[Lisa17]

Can you tell me what symptoms your daughter experienced and was the diagnosis made on a visual basis or by tests?

I've been told by consultant and GP that no test can tell but my sons hands would need to have colour changes to give indication. I know this is incorrect information as we have a strong family history of it.

[SVBO in reply to Lisa17]

Hi, 2,5 years ago we noticed some blisters on my daughter's finger tips, she said her fingers were numb from time to time. Blisters wouldn't heal and we took my daughter to our GP. GP just advised us to check Reynaud on line and said it will pass as it is quite common in girls. Looking back I am really upset about it as he should have checked her bloods for scleroderma. They didn't and we missed a year into her illness. When she developed few other symptoms (weight loss, hair loss, dryness of the skin) she was urgently admitted to hospital and treated for scleroderma. My advice is ask your GP to send you to Reumotologist to have all the tests. I very much hope that yours is primary and it will pass, ours was secondary. Best wishes. Svetlana

[Lisa17 in reply to SVBO]

Many thanks, I'll keep chipping away at them. His skin on his finger tips keep bursting open and bleeding this starts when the weather changes. Dr/consultants are saying its Psoriasis but we can't get it to heal. He doesn't have the colour change in his hands but gets severe headaches with temperature change and cold/sore feet. My mother has crest so understandably I'm a little more concerned. I would upload a photo but it won't let me.

[SVBO in reply to Lisa17]

My daughter's blisters healed by sea water baths, followed by solkoseril gel m.ebay.co.uk/itm/Solcoseryl... . You have to keep them warm as well. Best wishes

[Lisa17 in reply to SVBO]

Many thanks again

[SVBO]

Any time

[Lisa17 in reply to SVBO]

One more question!!! Please excuse my ignorance...Sea water baths??

[SVBO in reply to Lisa17]

We live in Norfolk, near the sea. In summer she would dip her hands in the sea for a bit. If it was cold we would bring some sea water home with us and warm it up a bit. If you are far from the sea, I suggest baking soda warm hand baths - might be a bit painful to start with but the blisters will heal faster

[Lisa17 in reply to SVBO]

Ah ok that's interesting thank you. Unfortunately we don't live near the sea we are in the highlands of Scotland however if we are ever near the sea I will take some home!!!!!

[AmyJ3]

I don't have a child with Raynauds but I have had it since I was a child/teenager and here's the things I found useful:

- I had gloves in my school backpacks and every coat that I wore, even during the summer time, and I avoided getting things out of the freezers.

- Warm (not hot, it'll exacebate the symptoms) water baths helped, but thankfully I never got to the extent of blisters. I never tried salty water baths but I can imagine it certainly helps preventing popped blisters becoming infected and allowing them to heal.

- I also wore thermals throughout most of winter in an attempt to keep my body temperature high.

- I also drove my Dad mad with having the heating on a lot and making warm squash or warm coffee/tea.

Admittedly, these are quite basic preventitive measures, but I didn't find much solace with Raynauds until I hit 17 and was allowed to try Nifedipine which works well for me.

[Lisa17 in reply to AmyJ3]

Many thanks for this.

It's a real battle some days. He's an 8 year old boy who doesn't think he needs to wear extra layers or hats and gloves, especially when he doesn't always feel cold and more so if others aren't wearing hats n gloves but his school have been great at asking him to wear them anyway!

[AmyJ3 in reply to Lisa17]

I can definitely see the struggle. I was about 12 when I first started getting Raynauds and it was hard for my mum to persuade me to wear thermal trousers! (Though understandably it's easier to convince a 12 year old to wear her gloves!)

We started with a thermal vest as I didn't notice it as much and I didn't overheat too much during slightly milder days. Also if he's a bit tech savvy and uses touchscreens or keyboards relatively regularly I'd try some thin touchscreen gloves may be of use so he isn't waiting for his hands to warm up while he's doing schoolwork.

It sounds like the school is very understanding with his Raynauds so that's fantastic.

Best of luck!

[Lisa17 in reply to AmyJ3]

Unfortunately he doesn't have a diagnosis of Raynauds, I'm having a serious battle with his medical team to recognise what I'm saying unfortunately. I had same issues with my daughter (she didn't have broken skin) and she's only just been diagnosed earlier this year age 17 after asking for a second opinion to an adult consultant and different hospital.

I will continue my fight....a mother knows!

[AmyJ3 in reply to Lisa17]

I've read that your son doesn't have the colour changes on his hands, which is really annoying as it's the main thing the docs look out for, but if you notice any colour change (try the feet too, as I found the heels can change colour before the hands), take a quick snapshot and show the doc!

Pointing out family history can help too, my Aunt suffers from Raynauds too and that added to the evidence.

It can be infuriating when you're told that you or your child will 'grow out of it' or needs to 'put on weight' or 'just wear gloves' when it is getting worse, but in milder cases it does go away on its own or when the child puts some weight on.

My doc was super hesitant to prescribe Nifedipine at 17, but I explained I tried everything possible and then she believed me. Then I moved GP and thankfully found a new GP that was even more understanding of Raynauds.

Best of luck to you!

[Lisa17 in reply to AmyJ3]

Thank you, all the help and tips are great - helps to hear about other people's experiences.

[Mypoorbaby]

Hi my 12 year old just got diagnosed with RA, MCTD and Reynauds 5 months ago. We live in Utah where this cold has been brutal. We are thinking of moving to Tuscon which should help. She wears her snowboots and double layers her socks. My advice is just keep him warm.