Please help me understand

[Dominobob]

I am very confused and worried. My babyboy (10 years) may or may not at this point have lupus. We received lab results back with a positive Ana ifa... and a speckled Ana pattern 1.... as you can imagine none of this makes any sense to me at all. We have an appt in June for a emg/nerve conduction study. First off I just went to library and checked out several books on lupus as lupus is a possibility. But I’m very confused on the positive Ana and what speckled means in human language and not doctor language. Also his Ana titer is 1:80... also I don’t know what that means. Will not get a definiate diagnosis of anything until after more blood work and the emg. For now I’m trying to understand what them 3 things mean. What I can do for him while I wait and how can I help my baby? Any advice or what I might expect next from doctors would be greatly appreciated as I have never been this scared and helpless in my life.

[Melba1]

Oh I’m so sorry to hear you’re going through this worrying time. Absolutely nothing worse than when it’s your child 🙁

A positive ANA can be one of the things that diagnoses lupus but it can mean all sorts of things and is found in lots of healthy people too. This ratio 1/80 is also quite low so it doesn’t mean he has lupus.

You say he’s having nerve conduction studies? What are his other symptoms?

Have you been referred to a rheumatologist? This would be the first step as they will either help diagnosis and give him all the support and treatment he needs (and lupus can be very well treated - you’ll read some scare stories but most people with the more mild type- which is the majority- get on with mostly normal lives, so you’ll only usually hear from those of us struggling) or they’ll be able to put your mind at rest and help find the diagnosis.

My son became very poorly at the same age as your son. Very rapidly lost the use of his legs, became incontinent and it progressed to him being unable to eat properly and very weak. It was a truely awful time and we searched and searched for a diagnosis (and got some ridiculous ones like school

avoidance and chronic fatigue!) he was in and out of hospital. Eventually he was diagnosed with guillain barre and received great support in recovering. It was the worst year of my life but children are exceptionally resilient and will accept whatever is thrown at them. It took about 3 years to make a full recovery and I remember the early pre-diagnosis days as tough times (far worse than my health problems because it’s your child) but he’s totally undamaged by it. The consultant asked him if he ever thought ‘why me’ and he said ‘well no because the statistics (he was a very mathematical boy 🙄) say it’s 1 in 200,000 get this so someone has to be that 1 so why wouldn’t it be me?’

I totally understand the fear and feeling of helplessness 🙁. I think the key is getting the right medical support and finding someone you absolutely trust. If you let us know where you live people on here can suggest good rheumy’s and if you ring Paul at lupus uk he’ll point you in the right direction and give great advice but don’t despair, it may be something curable and if it’s not it may be very manageable with the right care.

Lots of love to you and your son. Very happy for you to message if you want a chat.

Xx

[Dominobob in reply to Melba1]

Thankyou so much! After months of watching him decline we have finally found a diagnosis ... he has CIPD . Very confusing but he just left hospital after 8 days and 5 days of infusions.. thinking he has a long road ahead but with a diagnosis I can now educate myself fully on his condition. He is very determined young man to get better and run and play with his friends again so for now our focus is on infusions and pt.. so happy to hear your boy is recovering well. Cipd is the chronic form of Gillian barre... I have my stack of library books to get myself educated. My heart is a mess but we got this. So thankful we have finally gotten a diagnosis. Thankyou so much for your message as it seems you and I have a lot in common especially with the Gillian barre . Thanks again

[whisperit]

Hello Dominobob,

What a horrible place to be. As Melba1 says, the positive ANA test is fairly non-specific. It just means that your son is producing some antibodies against his own cells. But 1:80 is a fairly low level (the higher the number, the more the antibody production - mine was 1:1280 - more than ten times your son's - when I was first tested) The other tests will give you more idea on why this test is showing a positive result.

By all means, learn more about lupus/SLE, but do bear in mind that there are many other possible explanations, and it may turn out to be something fairly minor. The leaflets on the "home" page here are very good - clear and authoritative.

Meantime, maybe the best thing you can do for him is to be a good role model - show him how to deal with uncertainty and worry in a positive way?

Do keep in touch and let us know how things go x

[Chanpreet_Walia LUPUS UK]

Hi Dominobob,

Welcome to the LUPUS UK HealthUnlocked Community.

We are not medically trained here therefore, we cannot comment on your son’s blood results.

An ANA test gives an indication of whether a person may or may not have an autoimmune disorder. A ‘positive’ result usually indicates that an autoimmune disorder is present. There are specific tests and criteria that need to be met in order to make a diagnosis of lupus, to find out what they are read our blog article here: lupusuk.org.uk/getting-diag...

We offer a free information pack which you can download or request here: lupusuk.org.uk/request-info...

We published a blog article on ‘getting the most from your medical appointments’, you may like to read this before attending your son’s next appointment: lupusuk.org.uk/getting-the-...

Please let us know how your son gets on, wishing you both all the best.