Hi, just wondering if anyone has a young child with Lupus at all and any advice. xx

[Claregilchrist]

[Davros]

My lupus developed when I was pregnant with my oldest and then caught chicken pox off of her. Everything kicked off and come her first birthday and Christmas I thought I would never see her second.

She is hitting teen years soon and new difficulties abound. When they were young they both learnt quickly that mummy does everything on the couch. In the afternoon we would all go watch telly in my bed and end up dozing off. I also joined a mother and toddler group. One a week we met up in a play area. When the kids got to the stage of going off from the toddler zone and get stuck my mates would rescue them and bring them down and I would guard the cups of tea. As we rpwerre regulars the staff knew I couldn't do too much at times so they kept a special eye on my girls and by then they were so familiar with the place that they had loads of friends there and we're very confident it trundling back to me when they wanted a drink.

[Claregilchrist]

Hi,

It's actually my daughter who has Lupus and is 8. School a problem especially when they have to go outside for break times etc and the sun is out. She ends up flaring up and then being off sick and in pain galore again.

[nanny4 in reply to Claregilchrist]

Hi there,I feel deeply for your daughter,my daughter is 26 and was dxd with lupus a few months ago,I do feel she had had it since she wad a baby and even her peadiatricans all missed the signs.

She has twin 3 year old daughters who are being checked,as they suffer from fatigue,one suffers skin sores mainly in the spring/summet she also has raised inflammatory markers in her blood rrsults,also asthma. Hayfever and food allergies like my daughter does.

Also one twin always had a very slow heart rate in the womb,just like my daughter did.

I am sorry I haven't been of any help ,but I can imagine how you must be feeling as a mum ,I do hope someone here can give you some good advice on what will help your daughter,bless her.

I feel glad for her that she has a dx ,so she can at least get some good treatment, which in turn will minimize any damage to her little body.

Hope Paul from lupus UK comes along soon to give you some good advice.

Take care. Sandy

[Cariow1 in reply to Claregilchrist]

My son is 14 diagnosed with SLE last Sept . We have had similar problems. Does she have a school health plan? If you want any advice personal message me .Take Care Caroline x

[Jacks99]

Hi, my daugher is 9 and was diagnosed in February. My only advice is stay positive. Its so difficult, she's changed so much because of the high dose of steriods and she's been picked on at school. Make sure the school is aware, that's all you can do xx

[nanny4 in reply to Jacks99]

Ah bless, children can be so cruel,i hope your daughter's get all the help possible from there school's, if not perhaps your g.p or health visitors can help by contacting the school.

When my daughter was 11 she was bullied at school (15 years ago),when the school didn't help,we changed her school and when she wad well enough,she started a kickboxing class,within 2 years she became a black belt instructor,don't get me wrong,she never used her skills outside the class,but i made her feel so much better about herself,and the bully's thought twice.

In actual fact she did use her skills out of the class when she wad 19,she was on a morning jog,to try to loose weight,she always ran the same route,she was grabbed by a guy who jumped out from know where,he tried to sexually assult her,her boxing instinct kicked in she punch him in the face which in turn made him put his hands to his face and let her go.

Sorry I went a little of track there,I always told my daughter,every dog had its day! What goes around comes around,and it always did.

Take care, Sandy.

[Paul_Howard Partner LUPUS UK]

Hi Claire,

Can I ask where your daughter is currently getting her treatment? Please let me know if your daughter or any of the family need any support. The chair of LUPUS UK, Jane Dunnage does a lot of work with families that have young people affected by lupus and she would love to help you in any way that she can.

P.S. This goes for Jacks99 too.

[Claregilchrist]

Hi, We are based with Aberdeen as our nearest Children's Hospital but just going through Lupus UK to try and find her a specialist to be referred to as there is no one for children here. Think it will be a head down to Glasgow, but prefer to see someone who knows what they are doing. Local very kind but none eager to treat because she is only 8. Taking shed loads of Brufen for the pain, Ranitidine for the Reflux, Amlodipine for the Raynauds and inhalers for the asthma. Rather than start on yet more medication for the fact she keeps wetting herself when it flares and other problems they feel sensibly it would be better to see someone who deals with Lupus and happy to refer her so will wait on some ideas of who and go from there asap. Many many thanks, as school somewhat of a nightmare at the mo, but finishes today for 7 weeks. xx

[westlife1 in reply to Claregilchrist]

Hi we are based in Scotland and been told after years of illness my daughter has lupus or mixed connective tissue disease and if you would like to talk my email is [e-mail]

[AngelaW]

Hi Claire, just stumbled upon this article on the american lupus website

lupus.org/webmodules/webart...

There is also a link to a book written by a child, can't see it on Amazon but perhaps a local bookshop could get you a copy if you were interested.

Good luck with getting a good consultant for your daughter, it makes life easier.

Angela x