Questions and looking for support

[Gullyabb]

Hi,
I'm new and would like to start off by thanking those of you who take the time to answer questions from scared parents like me.

My two year old son has had 10 courses of antibitotics in the last twelve months for ear infections. He's been taken to ER twice for the croup, and has been a very poor night sleeper since birth. He gets unusually tired, black circles under his eyes and has recently lost weight.

8 weeks ago he started complaining that his leg hurt and on several occasions his leg gave out and he fell over. The problem seems to be with his hip or femur.

We've been for blood work and back and forth to the doctor. X-rays ruled out tumours or a break. At the pediatrician's today, the dr asked me several times whether he's ever had a rash on his face or stomach. (he hasn't) It didn't occur to me to ask what a rash would signify, and after doing a bit of reading tonight, I'm thinking that the dr. may suspect lupus.

His original bloodwork was neg for RH factor, but his white blood cells were low.

The first doctor thought it may have been Perthes' disease, then the pediatrician thought it was reactive arthritis, and now he's saying that if it were reactive arthritis, it should have improved by now.

Has anyone heard of ear infections being an issue with lupus?

We go for more bloodwork next week and back to see the pediatrician.
I've been keeping notes, and lists of questions, so any suggestions other parents may have would be helpful.

I could cry writing this, but in my heart I know there is something wrong. Whatever it is, I just want to know and deal with it. I'm a very strong person and we have a wonderful family. The not knowing however is exhausting.:sad:

Thank you.
Gully

[goats]

I don't have a child with lupus so I am unable to help you there.
but I wanted to say trust your feelings and don't let them stop till the fiqure it out. you know your child better then anyone.
keeping a daily diary of symptoms and what if anything relieves them
Does the sun make your son worse, noise ,lights, food
I am sure they have thought of all this
best wishes. someone with children will come along and give more information

[Raglet]

hi there, nice to meet you.

The good news in terms of lupus, is that if it was lupus it would be extremely unusual for only one joint to be affected. Lupus is characterised by multiple joint problems, with hands feet knees and elbows being the most commonly effected joints. So if he only has problems with his hip, it doesn't sound terribly like lupus (in my non medical opinion).

My daughter had endless severe croup until she was nine - children usually grow out of at around 4, so she was unusual. But she did grow out of it in the end, croup it a horrible thing, but it's viral and not related to lupus and often runs in families (there is lots of croup in my family).

Ear infections - no again as to a link with lupus, although they are very common in children, my daughter had her first at 11 weeks (she does not have lupus).

Whatever is happening to your son sounds very worrying, though to me does not sound like lupus, but if you are concerned it may be talk to your doctor about it. Many diseases and infections have rash as a symptom, so it is not automatic that the doctor is thinking about lupus.

Hope you get to the bottom of it all soon

regards

raglet