[Rhi]

Hi all, in my first post on this site, I mentioned that my 3 year old daughter also gets pains in her knees like me, and I have tested +ve for lupus antibodies. Now the problem is, the paediatric consultant phoned me today with my daughter's 2nd lot of blood results as the 1st lot came back with a high WBC due to a cold. Well now her ESR is 20, and for her age she should have a count of 10. I was terrified of her having leukaemia as she had all the symptoms, my 6 year old sister died from this horrible illness. No sign of it with my daughter thank god, but the consultant said that there is a high chance she has either juvenile arthritis or SLE. I am beside myself and soooooo angry at my stupid GP who dismissed her pains as growing pains.
She has to have all the arthritis tests done next Wednesday - ESR, lupus antibodies etc. What other factors do they test for?
I just need someone to talk to, I am so scared that my little girl could keep having pain forever, I don't know where to turn... please keep my beautiful daughter in your thoughts x
Rhi xxx

 

[Katharine]

Hi there,

I'm afraid I really can't help you with what things they may test for and I have no experience with juvenile illness but I just wanted to say hello and to send you as many positive thoughts as I can.

It is awful when a child is ill and the thought that they may have a chronic disease must be so worrying.

I hope you get some good answers from the people on here who have gone through similar experiences to yours. There are some, though they are fewer and maybe post less,

We will certainly keep your little girl in ourt thoughts, hugs to both of you :hug:
Katharine

 

[Joandublin]

Hi Rhi

Im really sorry to hear about these new worries. Its so much harder to take when our little ones are ill.

I dont have any paediatric experience either but I presume they will run a gauntlet of blood tests and perhaps this will give them a better idea of what is going on. Make sure to ask the Rheumy as many questions as possible and to explain things to you.

Did you already have the appointment today? How did it go?

There are a few members here who have children with Lupus. They dont post terribly often but keep checking your post to see if they have replied.

Other than that I can only send you the best of wishes for yourself and your little one. Let us know what the test results are.

Take care
Joan:rose:

 

[Hatty]

Dear Rhi

Poor you, how horrible for you all. I can sympathise as I have lupus and my daughter is currently being tested for possible Ehlers Dahnos syndrome/Hypermobility syndrome, and she too has joint pain, tiredness etc (she is only 22 months). It is deperately worrying, and hard not to make yourself literally ill with worry. However, you are on the case very early, and your daughter is so lucky to have a mother who is so proactive on her behalf and who understands chronic pain herself, and can help her cope and give an example of coping.
I was diagnosed at 11 with juvenile arthritis (in retrospect it was lupus, which went into remission at 16 and then got much worse at 21) and so I have also seen the other side, ie being a 'disabled' child, albeit an older one. It was difficult, but on the other hand, if you grow up with something you are able to be much more stoic about it and just accept that that is how your body is. It is frustrating, but children are remarkably adaptable. I myself know that my own disease makes it easier to understand how my daughter feels, and to be more sensitive to her need for rest/quiet/sleep at specific times.
My heart goes out to you and I hope that you get the best medical listening ears and willingness to help that there is. Keep us posted with how you get on with her blood tests.

They will probably test her for ANA antibodies, rheumatoid factor, complement C3and4 etc, as well as all the thyroid etc. They will probably test her urine for kidney function etc. Be prepared that they will need an awful lot of those little tubes of her blood as there an awful lot of tests! i don't know exactly what they do specifically differently with children, however. Just wondered: is she very bendy? If everything comes back negative she might have HMS...

A big hug and lots of good luck

xHatty

 

[Maia]

I'll be keeping your daughter in my thoughts and prayers. I hope this is just a temporary thing & it's not lupus/juvenile arthritis, but if it is lupus then you've caught it early which is a very good thing. Let us know how it turns out.

 

[Rhi]

Thank you all so very much xxxx
Beth isn't 'bendy' so I doubt if it's HMS. I'm so scared for her, I feel sick, it could be all my fault through having knee problems myself, I feel so guilty...

I told her teacher a while ago about her legs, and guess what, the stupid woman 'forgot' to tell me yesterday that another pupil 'fell' on Beth while she was sitting on the mat. Lo and behold last night she woke up screaming with pain in her left leg, all the way from her thigh (where the pupil fell on her) down to her shin. Could a 'trauma' like this cause anguish pain in her knees?
Being the paranoid mother that I am I looked up juvenile arthritis on the net. Another symptom is eye pain, yep she gets that too, although it only started a week or so ago.
Thank you for your well wishes for my little girl, just praying we get definite answers when her tests come back xx
Rhi xxx

 

[peonyprincess]

Rhi,

It is always difficult to find out that your child might have any kind of long tedrm illness. The first thing we do is blame ourselves for their illness and we really shouldn't. It is difficult for us as parents to have a child that has an illness that we cannot give some medication to and fix. Of course, anytime that our child is in pain, we are in pain.

I have had Lupus for over 26+ years and initially my mom and my doctor brushed the pain off as growing pains as I was in the 6th grade, you know, the years of puberty. When the pain continued and I couldn't walk, then they took notice and delved deeper and found that I had Lupus. It took several weeks, but once they found it, we were able to get the proper medication on board and the pains were more manageable. There were times that we had to increase or simply change medicationw to find the right one.

Now, fast forward to the year 2006, and my youngest daughter started complaining of terrible leg pains. I took her to the physician and they determined that she too has Lupus. Unreal. Currently all she is on is Ibuprofen three times a day and all is going well. There have been a few times that the Ibuprofen doesn't quite cover it and we then resort to narcotics as well as a heating pad. That normally does the trick.

What I would do if I was you, I would most definately keep an eye on those labs that are coming up. I am sure that you will keep am eye on her pain and please listen to her when she tells you it hurts. Don't let anyone what your daughter is or is not feeling. Believe your child when she tells you she hurts or is tired, and doesn't feel well. Just imagine a minature you.

I wish you the best of luck for you and your daughter as well as the rest of your family. Again, don't blame yourself, it is not your fault. Give your children hugs and kisses and love them forever, then nothing else really doeszn't matter.



Nancy

 

[Rhi]

Thank you Nancy xx I am so sorry your little girl has lupus too, it must be so hard for you all.
Yep I listen to my daughter every time she complains and I've got to the stage where I am asking her every hour if her legs feel ok. I give her ibuprofen when she complains and also massage her legs for her, this seems to help a little. Sometimes I put an ice pack on her knee and that seems to help too, if it is used with the painkillers. Is this ok or should I be using a heat pad instead?
We have a lot of family history of RA, so looks like this is a very possible outcome for Beth, and maybe myself.
How old is your daughter, if you don't mind me asking?
Wishing you both lots of pain-free days ahead xxx
Rhi xxx

 

[rudi]

Hi Rhi,

I will also pray for your little girl and keep my fingers crossed. Being a mother, I also know what it feels like when your child is ill.

Hang in there and keep a positive mind ...

Love,
Rudi

 

[Rhi]

Update

Thank you all for your well wishes for my little girl xx
She had her blood taken on Wednesday (4 vials) and the consultant phoned me today with some of her results. Her ESR has dropped down to 13, her FBC is fine too. Rheumatoid factor is normal although some more complicated auto-immune tests came back iffy. We are waiting now for her ANA results and some others, the consultant says that although some levels from the tests are a bit high, she is hopeful that she has merely growing pains. But would this cause her ESR to raise?
Anyway, will update here again as soon as I hear anything else, and thank you all for your support xxx
Rhi xxx

 

[greenhaggis]

Hi Rhi,

I' glad the results are being given to you quite fast! I hope your little girl was not daunted by having bloods taken.

When my little boy was just four he had bloods taken as his legs kept giving way and also suffered pain in knees. They all came back reasonably normal expect a couple that were raised which I think was ESR and WBC. We were told all his problems were due to a virus which made him weak plus growing pains! I'm not positive as this is now three years ago. He still gets pains and legs give way when tired or viral, but now they say its down to hypermobility - a physio attend our home! Jake due to his problems has very tight muscles (not develped properly) so can't sit straight and still gets pains! He tries very hard to do everything sportswise at school and we always encourage him to continue with normal childhood activities.

If the doctors do say its viral or growing pains I would still personally keep a diary of how she is without making a big deal of it for her so you can always follow-up in the future if things are still not quite right. I have learnt now (perhaps a bit late) with my own medical experiences and those of my children to follow my instinct. Is she hypermobile! Has a physio assessed her to check whether her muscles are working correctly for her age. This may or may not be the problem or indeed the only problem but I do now for know my son is feeling something is helping with the physio. Perthes Disease (arthiritic) is also something to be aware of and ask about. It is more common in boys, some specialists do miss the signs for this as well.

I'm not sure if any of above helps, but please take care, keep strong and continue to do as many normal things as possible.

Hope all works out well for your daughter keep us informed!

Lesley

 

[Maia]

Many things can cause the ESR to raise - it's much more common for it to be elevated in the "general population" for non-autoimmune related reasons when it is only slightly elevated. If was 20 before... which is relatively speakin only slightly elevated... and now is down to 13 without any kind of treatment, then that is a promising sign it was due to a viral infection of some sort.

I'm certainly hoping that is the case... the other test results will provide much more specific and relevant information to determine if she has an autoimmune process going on.

 

[jaki]

hi rhi
please God your daughter will be ok i will keep her in my prayers my own inlaws are having the same problems as you the little girl is 4 and has been complaining with leg pain especially at night her ana just cane back positive so w are all quite worried.waiting for more results to confirm.take care and stay positive and mind yourself you need to be well to deal with this kind of stress

 

[julie42575]

Hi all, in my first post on this site, I mentioned that my 3 year old daughter also gets pains in her knees like me, and I have tested +ve for lupus antibodies. Now the problem is, the paediatric consultant phoned me today with my daughter's 2nd lot of blood results as the 1st lot came back with a high WBC due to a cold. Well now her ESR is 20, and for her age she should have a count of 10. I was terrified of her having leukaemia as she had all the symptoms, my 6 year old sister died from this horrible illness. No sign of it with my daughter thank god, but the consultant said that there is a high chance she has either juvenile arthritis or SLE. I am beside myself and soooooo angry at my stupid GP who dismissed her pains as growing pains.
She has to have all the arthritis tests done next Wednesday - ESR, lupus antibodies etc. What other factors do they test for?
I just need someone to talk to, I am so scared that my little girl could keep having pain forever, I don't know where to turn... please keep my beautiful daughter in your thoughts x
Rhi xxx

Hi, Rhi
Just wanted to let you know that I understand what you are going thur. My
3Yr old son was very ill this summer. They did not know what was wrong. Because he had very high blood presure 200's over 170's, Blood & protine in his Pee. He also had like 5 time or more antibodys than he should, His liver was enlarged and his pancrsip. He was in the hospital for over six weeks in the ICU. It took about 4 Weeks for them to say he had SLE because it is very uncommom it small kids and also him being a boy make him even a more uncommon case. He is on 14 meds. has had tranfussions and has Chemo once a month. Just remember there is help and treatment. I know it's hard to think of your own child having SLE. One other thing he also has the Arthritis with the SLE he just learned when his legs start to hurt to take a break. I give him warm packs for his ankels because they hurt the most with his knees. The way they finely said he had SLE is after the did a Kidney Biyo.

Keep you in my pryers
Julie42575

 

[Rhi]

Another update

Hi all, thank you all so much for your messages x
We went to the hospital today for my daughter's blood results. Thankfully everything came back clear!! I guess I'm a very paranoid mother with the family history etc. but after a few dodgy results these ones have come back normal so they think it is merely growing pains. We are to keep an eye on her over the next year regarding her knee pains, and if they get worse we are to get re-referred for more tests. Looks like my GP isn't 'stupid' after all lol, but better to be safe than sorry eh.
Now waiting for my own diagnosis lol
Thanks again x
Rhi xxx

 

[Sage Hen]

Oh Rhi!

What wonderful news! I am so happy all the tests came back normal for your little girl..

Sandy

 

[karen.w.]

That's wonderful news rhi!!I'm so pleased :eleph: what a relief for you all.
& it's good to know they are keeping an eye on her too.

It's understandable you are very concerned rhi,especially under the circumstances.
I am the same way with my daughters too,due to having lupus myself,my sister has APS & my mum is coeliac..but we have to try & stay as positive as we can & hope for the best!!

I hope you are keeping well too & getting plenty of rest
take care
:hug: karen x