Possible toddler lupus
Posted , 2 users are following.
My daughter is 23 months old. She has been getting near monthly fevers (without any known reason), lethargy, and irritability since 6 months old. She also has a rash, typically on her tops of her hands and tops of her feet as well as in a patch one hip/buttock area- always that one same spot. The rash, we were told by GP, was probably eczema and he gave us a steroid cream that helps as long as we use it, but returns as soon as we stop. She just had blood work done Monday, I'll see the pediatrician tomorrow, but he called today to say her inflammatory response was up, that he wants more blood work done tomorrow and that he's still waiting for the results of the ANA test. He mentioned lupus. I'm extremely nervous and was wondering if anyone has any experience with a toddler with lupus and if this sounds like the symptoms of lupus to you guys? I know I'm jumping the gun but it's hard not to when it's your baby. Thank you for any insight you may have.
0 likes, 3 replies
margaret22116 taram1979
Posted
hey there, I can't give you experience of observing a toddler with Lupus. But I have experience of the other end of things in that I have something very similar, since birth but with periods of remission so can tell you a bit about that side of things. Heartfelt sympathies if it is that. But also, on the positive side....I'm still here at almost 54. I had a normal education and got a degree, I run my own business and it is not an insurmountable hurdle for a lot of sufferers.
Totally understand your concerns and totally understand that everyone who has vasculitis is different. But the big positive that is flashing up here is that, if your daughter has Lupus, it is being diagnosed early.
I know from specialists I have seen that the earlier you get diagnosed the better your long term prognosis just in terms of getting disease well controlled which is the key to a comfortable life. I think if your docs are catching this early you have very good possible outcomes.
I would say, from personal experience, diet will be important to your daughter if she has any form of vasculitis. Keep her food healthy. I know she is young at the moment but as she grows up this will be more important to her than it is to other members of the population.
And remember, as I have just pointed out to someone else, Venus Williams has Sjogren's. Very similar to Lupus. Treatment is advancing all the time. These illnesses quite often come with periods of remission. My illness went away from about age 7 til early 20's. I am currently in remission again after a long treatment. And yes, that has it's down sides. But for me, it wasn't that hard and it was worth it.
I may not be telling you anything which confirms whether or not your baby has this condition. But I hope speaking to me can be reassuring in a way about the life that she can expect to lead. Much love to your and to her. If you want to ask me anything please do. But obviously in terms of diagnosis, your specialists will have to do that. I hope they do it quickly and you are not kept waiting too much. The vasculitis foundation of America may be a good place for you to seek support pre diagnosis. They can answer medical and technical questions for you. x
taram1979 margaret22116
Posted
Thank you for your response.(I also forgot to mention that she doesn't eat any solid food during her episodes. I'm grateful I'm nursing still as she will do that.) I'm glad to hear that you're in a remission. <3 to you. I guess now it's just a waiting game. On one hand it would be nice to finally have an answer, but of course, this isn't the answer I was hoping for. It was good to hear about Ms. Williams. I didn't realize she had something similar. That makes me less frightened. I was worried about quality of life. I am also worried about the steroids and other aggressive tx, and what that means for her future, ie future children, weight gain, growth, puberty. There is so much going through my head. I take comfort in that you say you've lead a pretty regular life. Thank you for that. I will check out the site you mentioned. Thank you again, and take care.
margaret22116 taram1979
Posted
Yes, I appreciate your worry and concern. It is a natural place to be. And I remember well that my appetite was affected when I was young and I was the pickiest eater ever! Drove my dad crazy.
Also I don't have any children - that wasn't by choice but I am sure was nothing to do with the condition. I am in touch with many in a help group on facebook who have had children without any problem and their children don't necessarilly inherit their condition or any other auto immune condition.
And the facebook group I mentioned, it is invaluable. If there is a diagnosis, look for a group on Facebook. People on there share experiences, tips and just support. From all over the world. Some of them are mums of young sufferers. Good luck with it and wish you both well.