My daughter has JiA with uveits

sarahthesinger

Hi my name is sarah and My daughter was diagnosed with JiA with uveitis when she was 2 years. It was devastating news that had lots of long waits to see how many joints would be affected in the beginning. Her main joints affected are her knees with a toe and finger too. In the beginning salfasalizine was introduced alongside ibuprophen and steroid injections. When it was found that Emmie had Uveitis meds were changed and Emmie then needed to change her medication to Methetrexate 10mg. She had been on Methetrexate for 4 years then as she was doing well cons decided to slowly take her off. Finally Emmie came off Methetrexate , 9 weeks later it all came back. This was awful I really thought it was gone. She has been in a flare now for 14 weeks and back on Methetrexate and just recently had 2 steroid injections in her knees, she has had hydrotherapy constantly.. I feel so terrible, lonely, useless as a mother. I feel so bad for her. I hate this disease I wish it would go away. So many people make me feel alone. It is so hard to deal with this unpredictable chronic illness.
As a mother I want to take it from her. She is 8 in two weeks and we can't even celebrate on her birthday as she has to have her injection, we will the next day, but I want so much to do it on the day. I feel so sad with nobody to talk to I worry so much. Now she is on 15 mg of methetrexate. I am in shock still. Sarah

dreamdaisy

Oh Sarah, I am so, so sorry to read this. This is a pig of a disease, isn't it? I did not have it as a child, and don't know the pathology of it in children, but I am on similar meds and had similar treatment and it is such a trial - not only for the child but the mum too. I think that the pressure on mums is often forgotten, the child gets most of the attention (and rightly so) but this disease hits everyone in the family, not just the afflicted one.

You know that the meth brought things under control before, so let's hope it does so again. I am sure there was still some residual meth in her system so hopefully the re-start of treatment will soon bring her levels back to the beneficial ones and the improvement will begin to happen.

You are not a useless mother - you are one who cares but the helplessness and isolation are very familiar feelings. Illness does isolate both the child and the parent - I spent my childhood being very ill, firstly with severe eczema then chronic asthma, so mum and I spent a helluva lot of time together. For you the roles of mother and nurse are blurred to a ghastly extent - having to inject your daughter must be hell for you, but if it helps her then it is worth while. Cold comfort, I know.

I hope she is able to have a lovely birthday, no matter what. Let us know how you get on, please, we're here to listen. DD

stickywicket

I'm so sorry, Sarah. As someone who has had what was originally a juvenile form of arthritis for many, many years and has also had two children (now 40 & 37) I know without a shadow of doubt that I'd much rather have this nasty disease myself than have to watch my sons suffering.

It seems so unnatural, doesn't it? As a parent you just want to protect them and keep them from harm and kiss things better. You can't do that with arthritis but, please, don't go to the other extreme and blame yourself. You are definitely NOT 'useless as a mother' though I can see you are almost certainly feeling alone and cut off from how life is for other mothers. Please remember that we are here anytime you want to talk about it. My own arthritis also made me feel lonely as a Mum because there was so much that I couldn't do and join in with. I was kind of separate and different from the other Mums. It does get easier. You do, along the way, find good people who, even though they're not in your position, do genuinely want to share it and try to understand it so you end up feeling not quite so alone.

I hope the methotrexate kicks in again quickly. I had to come off it once for weeks before a major op and I was back on it afterwards with it helping just as much as before. I hope it will be like this for Emmie, too.

sarahthesinger

Thank you both for such kind words. As I read both of your messages I suddenly felt someone was there to listen it was so refreshing. It is so hard tackling this disease. It made me cry to read such kind words. I must be more positive and not so negative. I am so tired! I just want my little girl to be well. Thank you again sarah :P

dreamdaisy

Anyone's journey with arthritis is like being on a rollercoaster, it swoops up and down and we are dragged along with it. This pernicious disease does what it will with our joints and our emotions, it toys with us, gives us moments of hope then moments of black despair. It is doubly hard for you as you are watching your lovely little one battle on and you know there is nothing you can do to change it.

Come and talk to us whenever you need, share the bad times and the good ones. We are always here. I wish you both well. DD

stickywicket

sarahthesinger wrote:

I must be more positive and not so negative. I am so tired! I just want my little girl to be well.

Sarah, those three sentences say it all. I think we all have to stay positive, and there are many reasons why that is rational and logical, but there are times when it’s so, so difficult precisely because the disease has worn us out both physically and emotionally.

Of course you want Emmie to be well. I’m sure they will soon get the disease under control again. It will always be there but there are positives even to that. You will both discover strengths you didn’t know you had. Arthritis teaches us many lessons we’d rather not learn but, having learnt them, we wouldn’t wish to be without them.

Remember we’re always here.

Joroyle

Hi Sarah,

I'm so sorry you are having such a dreadful worrying time with your Daughter. My Daughter was diagnosed with JIA and Uveitis days before her 7th birthday. She spent her 7th birthday in hospital having steroid injections into her eye and knee after intensive steroid drops failed to work. She had been having problems with her knee since she was three and her Arthritis had never been picked up or diagnosed, I was just told her aches and pains were unexplainable! I believe that had her JIA been picked up earlier, her Uveitis may not have occurred. Jenny is 8 now and is still on eye drops daily and has been since diagnosis, she is also on Methotrexate 10mg. She's been on oral soloution then changed to Sub Cut injections. I've now had her put back on oral meth as she was developed a phobia each week to having the injection, it was awful. She constantly seems to have a sore throat/ear ache but everything is put down to a weakened immune system.
I do hope you get help and some reassurance and that your Daughter settles down again soon.

Jo

worriedmum

Hi Sarah & others,
Haven't posted for a while but your thread prompted me.
You may have read about my daughter Freya on here somewhere but will give you a whistle stop history: Diagnosed aged two with Oligoarcticular JIA. To date has had 9 joints injected, is on 10mg Meth (oral), Folic Acid, Iron supplements for persistent anaemia despite good diet, Ibuprofen PRN, and since June 2010, Pred forte eye drops for bilateral Uveitis.
When the Uveitis was first found at her routine screen, she started on hourly steroid drops, then gradually has been weened several times down to 2 drops a day, even once a day for a short time but below two, the inflammation returns. Just been found to have IOP of 28mmHg and 31mmHg so now also taking Timalol eye drops OD to bring pressure down, and we are back this week to see if it is working. Still on one drop Pred forte too so can't help thinking they are working against eachother.
We are discussing Humira with her rheumatologist and eye cons and may start taking it as part of a clinical trial in September, as they have said she will need some other therapy to control the Uveitis.
As her parents, James and I are really scared about trying something new and as yet unlicensed for this age group in the UK and wondered if anybody had any experience of Humira. Would be grateful for any response and to hear of similar experiences if you don't mind sharing. Meanwhile, I hope your children are all doing ok today and wish you all a lovely weekend.
Sam. x