Scleroderma & Raynaud's UK (SRUK)
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Raynaud in Children

Hi All, my daughter is only 2 years old and has been diagnosed with Raynaud’s phenomenon, looking on some advice as to what you do in order to keep them warm and if they have an episode how to calm them down, also have you applied for DLA and were you successful or not?

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Dear Raynaudchild

I’m across the pond in the USA 🇺🇸. I’m sooo very sorry that your daughter is affected by this disease being just a precious baby 🍼 it is too cruel to know this.

I first noticed mine own reaction about age 10 and both hands and feet by age 12.

In my case I reacted even indoors. With a simple chill for whatever reason I would freeze. In my teens I would have asthma like bronchospasms from eating ice cream. I developed multiple allergies and asthma too.

There are battery operated gloves and socks for adults but I’m not sure if for children.

I inherited it from my dad and his side of the family.

Having the Phenomenon diagnosis means it’s secondary to some other autoimmune condition.

My dad taught me that when the hands and feet blanch white or turn blue that you pink them up by running lukewarm water (not hot as it damages tissues) until the pink color is restored.

What doctor diagnosed her??? You should consult a pediatric Rhuemetologist about the measures used to help her calm down and learn to cope with this disease.

Again I am so sorry about her diagnosis and also for you and how this emotionally affects you and your lives.

Best wishes and abundant blessings.

😊🌸🌿🦋🙏🤗💗😘

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Raynauds can be primary without a secondary condition

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This is true. But RP is secondary according to my doctors. My dad and I both have autoimmune disease and our RP is secondary to that

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Raynauds is just an abbreviation of Raynaud’s phenomenon- it can either be stand alone or secondary to an autoimmune condition (like we have).

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That’s what I said. Thank you.

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Wearing layers, mittens with flaps are better than normal gloves, keeping clothes in the airing cupboard, towels on the radiator, may need to wear gloves inside the house fingerless variety, scarves, inner and outside. May need to wear gloves all year round. Warming hands when they are out in hot air dryers. Keeping hands and feet moisturised is important as well.

Also even if you think it's the most oddest question post it on here and someone will try to help. The SRUK website will be help as well. Take care hope this helps

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It is heartbreaking to hear a little baby with raynauds, I am so sorry. A few ideas I can think of: electric blanket; room thermometer; heating on (in bathroom for example); keep core warm; learn what triggers attacks (maybe keep a list); use your own body heat to warm them back up (avoid accidentally heating too fast/much, which can hurt); see the rheumatologist- perhaps there’s advice available Fromm sruk?

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Hi there, I have primary raynaud’s (not related to any other autoimmune condition) and all 3 of my children have inherited it to different degrees. I’d say use lots of layers then you can add/remove as conditions warrant it, because overheating can be as bad as getting cold. If you check online you can also find specialist clothing that will help, for example I ended up buying special ‘medical socks’ for my youngest son whose feet really suffers at school (https://www.thewoolcompany.co.uk/products/medical-socks?variant=16132066771062&gclid=EAIaIQobChMI0eDD5qTY3QIVjbHtCh2iOgpSEAQYASABEgKZ4fD_BwE). Good luck!

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Hi! I am really sorry that your daughter has Raynaud. I very much hope it is primary and will go away but for your peace of mind I recomend to have her blood examined for underlaying conditions. My daughter started to have Raynauds when she was 9 y.o. We didn’t know what it was till she had ultcers on her 2 digits. GP simply told not to worry and google the internet on how to deal with Raynaud (he probably thought it was primary)! They only send her to children’s hospital after nearly a year into a desease, when she had lost a lot of weight a lot of hair and her skin became very dry. We only saw a Scleroderma specialist a year and a half later. That makes me really sad. That GP could have checked her blood for ANA - that would have made things easier...

Next month my daughter will be 12. At 10 she had a month long treatment for scleroderma in hospital, lots of medication including for her Reynolds and she is better now. For nearly 2 years we have been on AutoImuneProtocol (AIP)/Paleo diet, which is not recognised by our specialists, but we don’t care because we studied scleroderma from every possible perspective and we believe the diet makes a big difference with any autoimmune condition. She no longer takes medication for Reynolds as she hardly ever gets her symptoms. Wishing you strength and as I said hope your daughter’s Reynolds is primary.

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That’s very good to know, thank you for your reply as my daughter does have patches of dry skin but my GP has only put it down to eczema, we noticed it either before 1 year or just after as her hands and feet were always cold and in the winter would turn blue or red. She does not gain weight much and doesn’t grow hair fairly quick so I will go to the GP to get tested for ANA.

Thanks again for your help

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Hi

Sorry to hear about your daughter. My daughter was diagnosed at 2 with raynauds. She then developed linear scleroderma at the age of 6.

Most of the time raynauds is primary and can be treated conservatively. We found multi layers of clothes, warm mittens and handwarmers helpful, and keeping body core plus head warm helps. nursery and school were also good at keeping her in when it was really cold. It is unusual although not unheard of in a toddler, and it can be primary. Has she been diagnosed by a GP or a specialist? I think if she hasn't seen a paediatrician it is worth a referral to a paediatrician as they can check for autoimmune conditions which are usually assessed for by a combination of symptoms, blood tests and clinical presentation. Often though autoimmune conditions manifest slowly over a long period of time and blood tests alone don't always give answers. My daughter was treated conservatively until the scleroderma appeared when she was treated with steroids and immunosuppressants. She found her raynuads did improve with this treatment and rarely struggles with it now. It can be quite scary reading up about these conditions on line, but they are rare and all being well, she is just unlucky to have a primary raynauds young- if it is in the family it can occur in children. Hopefully you can be reassured.

Re DLA I don't think she would qualify for it. The criteria is very strict and significant needs need to be present to have it awarded. They would argue at 2 she needs 24 hour supervision and care requirements are no more than other 2 year old children. We've never applied for it and wouldn't have thought about it as raynauds doesn't require extra help to manage it.

I hope this helps and she manages to avoid attacks, they can be so painful and in young children so hard to explain and reassure.

Good luck.

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Hi Dramatic, she has been diagnosed with raynauds, they had spoke about lupus but looking through her notes has never been tested for it in her bloods, we have seen a paediatrician already who has said only raynauds and the dryness on her skin is eczema, at the moment she is having to have 2 different inhalers to keep her airways open to help with circulation.

I will try what you and others have suggested, it’s just so hard as she does not understand, also is not able to talk or say anything so we don’t know when she is having an attack or not.

Thanks again

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I am very sorry about hearing this. It is a very horrific disease and the only thing I can tell you is to keep her warm. Make sure that teachers and people she’s with need to know this so she doesn’t have to have as much pain if she gets to cold. I use an electric blanket set on low in the winter months since we live in Iowa.Make sure she sees specialized doctors also and not just regular practitioners. Keep her hands moist so she doesn’t get ulcers on her fingers. Use sensitive skin products. I hope all goes as well as it can for this sweet little one!

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Hiddie....,

I had *Raynodes* as a child ...., I would get some of the **Warming Packs** that can be placed in the pockets of her *Sweater, jacket and coat* ALWAYS keep extras in her *Back packs* , or Bag you Carry around with her (extras change of clothes and pull ups (if she is still in pull ups) ...

... Keep around some **Dress up *Gloves* (most little girls like TOO play with *Fancy Gloves*, Hat's , **Dress up clothes**..., Encourage her too *Wear Layers* by **pretending ** THEY are Secret** Super Hero's ** clothing...

Get her a *Fancy little fur muff for her little hands 😇... My girl's were crazy for soft furry gloves TOO...

I had *Raynodes* from childhood ...,

but my Momma always said "Just get yourself warmed up !!!" Don't go outside and stay in the Cold weather so long .......

My Momma had no clue that I actually Had **A form of Scleroderma ..., I even had very thick , dark skin , on top of my feet.., (I remember being teased) ... I would ask why my *feet look different* , the reply "that was caused by your baby shoe's" ...., (Baby shoe's just don't cause a mark that stays around for **Year's**) ...., Around the age of 4 -5 yrs old..., My brother an I both developed a strange condition ..., **Our knees had swollen Up !!!.... We could NOT straighten out our leg's !!! I think the Adults , (older siblings , and parents) thought we were *faking* They tried too *pull our leg's straight* (you want to hear a couple kid's screaming in Pain!!!) Only after a couple months of being *crippled* were we taken to a Doctor, who's diagnosis was : **Growing Pain** or maybe ..,

**childhood arthritis** .., (just let them soak in hot bath water a couple times a day , heat wraps, keep working with the *stretching exercises* .., keep them MOVING , outside playing give them a *a baby aspirin for pain... ) .... The doctor wanted too take pictures of our knee's ..., (I'm sure it was x-rays) .., When you are a child in a *poor family* .., you get the *least expensive Medical care* alternative ....

I'm positive without a doubt..., THAT was a symptom of *Systemic Scleroderma*

*** unless you are **Bleeding profusely** .., have a **bone sticking out of your skin** or the **Neighbor chops Off Your Big Brother's toe** .., (he was helping chop Wood for winter) ..., An a toddler who finds her Big Brother's *kicks* covered in blood ..., DOSE a whole lot of screaming and crying for her *Big Bubba* ... (Fortunately his toe was reattached in surgery)...

My older sister..., Bless her heart.... Had food allergies ...., Momma had made a Fresh coconut cake ..., My sister said all I did was get a tiny pinch of coconut an I eat it ..., Well my throat swelled almost closed , I passed out , an I woke up on the kitchen floor ...., MOMMA said "Girl you get up off the floor!!! You have been laying there long enough!!! What kinda game are you playing...., You still thing."

...... She had no clue her daughter was having an alergic reaction......

Bless your heart 💞 ....

I hope the ideas help.....

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