Anyone have a child or grandchild with Lupus ?My grandson was diagnosed last year aged 11 but had for suffering for at least a year .

[happygrandma]

All survivors of this horrendous illness seem to be female and older .

I would like to be able to connect with someone who knows a younger male ..

Love and my prayers to you all.

[loopy-lou]

Hello happygrandma

I am so sorry to hear your grandson has been diagnosed with lupus at such a young age. It must be extremely hard for him to understand and too young to suffer. I have SLE & fibro. My son who is now 17 is waiting for a diagnosis. He has been having lots of problems for two years. The paediatrician first suggested he was over weight when he was getting severe upper leg/hip pain on one side, even though he had a positive ANA. He then lost 3 stone and is now super slim. At the time we both felt it was not a weight issue. Next he got chest pains. This was then followed by an ECG which showed as normal. Another blood test showed a positive ANA still. He said this meant nothing. He then went on to get pains in his fingers and hands - these are pretty much continual now. He then was referred to my rheumy who is uncertain and is now waiting for an appointment for an MRI scan and results from more blood tests. On top of this he gets fatigue and often sleeps 12 -16 hours at a time. He is also getting chest pains again. I see so much that is like me so I feel it is lupus. I still don't think he is being taken seriously enough as he is young.

My son doesn't want to think he has lupus as he says he is too young. I am aware it can be at any age. How did your grandson get a diagnosis? It is awful to see the young suffering. I hope your grandson keeps well.

[happygrandma in reply to loopy-lou]

Hello

My Grandson first started showing symptoms of something we didn't know what in 2010 aged 10..he was tired all the time and had stopped wanting to do all activities of which he had many ..football ,dancing ,drama and tennis.Dr tested his blood and said he was very anemic and put him on a 6month course of Iron meds.He picked up a wee bit in this time but whenever the course was finished he went right back down ..and much worse than he had been previously .The depression he was experiencing was the worst to watch...

So back to Dr. and he was referred to the Edinburgh Sick Children's hospital....at first they were looking for Leukemia as his symptoms seemed to reflect this.

After many many tests the wonderful oncology consultant mentioned Lupus.. We knew nothing about this condition but they were amazing with the speed in which they reached their diagnosis ..Days after diagnosis the rash appeared right across his face "The Butterfly "

They have a dedicated Lupus team and within day's they had everything set in place for him .

He needed intense treatment at first as they found the Lupus had damaged his kidneys.He has three meds he has to take every day now and monthly checks at hospital but fingers crossed is doing really well at the moment .

My daughter and her husband are coping really well but I think that is a survival mechanism ....

I hope your son gets help soon and you just keep at them till he does , stamp your feet and shout if you have to ..

Kindness regards

Helen..x

[loopy-lou in reply to happygrandma]

Hi

Thank you so much for letting me know. I am so sorry to hear about all that your grandson has been through. It must be awful for all of you to see your grandson suffer, My son has shown no signs of a butterfly rash. I am watching for all other signs - as I have lupus I can observe without alarming him. I am going to wait and see what the MRI scan shows and what the consultant has to say. If we are not satisfied I am going to ask for second opinion. I will certainly stamp my feet if I have to! I hope your grandson keeps well. Kind regards x

[charm81]

I was diagnosed when I was 15. Leading up to my diagnosis my parents/family had a battle with the Drs in order for my symptoms to be taken seriously. Only when I had a number of seizures was I finally admitted into hospital.

Loop-lou, with regards to your son you have to be persistent. When I was in my teens I was very much in denial I didn't want to believe I had this life-threatening illness. I just wanted to be a normal teenager and I suppose your son feels the same.

Happygrandma, I would just like to say that it is an awful illness, but at least he has been diagnosed at an early age so that his symptoms can be managed at this early stage. Unfortunately I do not know of any young males to pass you on to but I'm sure this forum will provide you with much needed support.

All the best

Charm81

[happygrandma in reply to charm81]

Hello

Thank you for your kind response .

Helen.

[loopy-lou]

Hi Charm

Thank you for this. You are absolutely right - he just wants to be a normal teenager. He is now not telling me when he is getting chest pains which is worrying. I want to get him to the GP to have them listen to his chest. I feel the more we turn up they will take it seriously. Can you remember what early symptoms you got as a teenager? They said the MRI scan appointment will take up to 6 weeks. Take care.

[charm81]

Hi loopy-lou,

When I was in my teens I was very sporty and active. My early signs were joint pains in my legs and lower limbs, and my fingers would often swell up like fat sausages and become tender and very sensitive to touch. It made it difficult to grip stuff.

Leading up to my diagnosis I couldn't walk and had to be supported by my mum and sister either side of me. I also had neurological involvement which was cause by the seizures. Apparently I banged my head during a seizure which in turn made me behave in a peculiar manner due to the head trauma.

I also began getting fevers and constantly felt under the weather.

As you may know Lupus is known for mimicking other diseases and the joint pains was just passed of as growing pains and then sickle cell anaemia.

Hope this helps as oppose to scares xxxx

[loopy-lou]

Hi Charm

Thank you so much for letting me know about your early signs. There are similarities to my son. He was getting severe pains in his hip and upper part of his leg. This has now gone and it is his hands that are painful along with headaches, chest pains and fatigue. As I have lupus I can see similarities to me and I would have thought the rheumy would consider lupus particularly as he has a positive ANA. Will have to now wait for the MRI scan and go from there. Will not give up until we find out as it is not normal for a teenager - not growing pains if they come up with anything like that. Keep well and thanks again.xxx