no more treatment

saraht · 15. Jul 2010, 08:44

hi my name is sarah,

i am here for some help and support as i have a 9 year old daughter who has chronic jia, lucy has it in her jaw, neck, elbows, wrists, all fingers, spine, hips, knees, ankles and all toes.

i will just give you abit of history about lucy and then explain the awful situation we find ourselves in now.

lucy started limping just before her 2nd birthday for no reason, after a couple of weeks i took her to see our gp who didnt know what was wrong with her so sent her to hospital for an xray, the xray showed nothing but we were sent to orthopedicts as lucy screamed if you touched her leg, we spent the next 2 years in orthopedics with no luck, lucy was getting worse but i was told on our last visit that she was going to be referrred to a psychiatrist as in this consultants proffesional opinion it was all in lucys head. we went home and tried to get on with things, lucy was due to start school for taster sessions and i was called in to the school to see the head, i lived in a tiny village and had 2 boys already at the school, they were worried that they would not be able to cater for lucy as by this time lucy permenatly dragged her leg behind her, i had to take her out of playgroup as they could not give her the time she needed, lucy could not run, get on or off the floor and talked so quitely you could barely hear her. i felt like they were accusing me of being a bad mother as i could not tell them what was wrong with her. in desperation i went back to my gp and saw another gp, i sat about 5ft away from him with lucy on my lap and told him what was happening with lucy, he never examined lucy just starred at her on my lap and said your daughter has artritits.
upon examining her and me thinking while he is doind this he has lost his marbles, he gasps and says this child has severe jia and needs to go to hospital immediatly. we were seen within days by a proper consultant who told me that lucy had the worse case of artritits he had seen in years. but did it stop there? no!!! due to the fact that lucys jia had been left un treated for the 2 years we were in orthopedicts she had extreme damage to her hands, feets, knees and ankles..

to date lucy has just been told that there is no more treatment currently available for her, lucy has been on methotrexate for 5 years with a small response, lucy has been on steriods on and off for 5 years which work fab but due to the high doses she has to have they are now concerened that she will develope organ problems, lucy is allergic to anti tnf drugs which she found out after taking etanercept, severe migrianes and infliximab nearly killed her she had anafalaxis luckily we were in hospital and she made a full recovery. we have been on abatercept for a year now and unfortunatly she is not responding well enough to it. lucy also takes diclofenac daily. so where do we go from here her cosultant has never met a child like lucy in 20years and it was clear to see on her face that she is as upset about these turn of events as me and lucy are, we are currently waiting for her consultant to get in touch as she really does not know where to go next, steriods are the answer but lucy has had so many of them already she is worried about the long term damage internally. lucy has come really far in the last 5 years and has had some dedicated professionals looking after her, through physio and hydro and to some extent the medication she has been on she now runs, walks, talks and no longer drags her leg behind her, we know that lucy needs alot of surgery in the future and things will never be easy but my question now is what does the future hold for her now? with no treatment being available suitable fior children its likely she will be permantly wheelchair bound in a couple of years, or alternatlivly go back on steriods and have organ damage later on. lucy said to me that she feels like giving up but i wont let her, when someone tells you that your child does not know what it is like to not have pain it breaks your heart but i will not let artritits break her spirit.

andylambs · 15. Jul 2010, 12:05

Sarah your and Lucy's story is heartbreaking. I wish with all my heart that you have some good news soon.

You are totally right not to let Lucy give up. It's awful that the anti-TNF drugs are an allergen for Lucy. But the research into Arthritis drugs is moving forwards every day.

Who knows what will be available tomorrow? Enbrel was released in 1998, Infliximab was approved for Crohn's disease in 1998 (I can't find the RA date), Adalimumab was released in the US in 2003, Abatercept approved in the US in 2005, Certolizumab pegol was only approved in Europe last year.

So much has changed in the last 12 years. Without these drugs so many children would be facing a life of permanent disability. Maybe there's a drug that already exists that Lucy isn't allergic too and you've just got to find it. Or maybe the next one released will be the right one for her. Do not give up hope.

The prospect of organ damage is a scary one. We lived with that prospect on methotrexate which didn't agree with my daughter's liver at all. You can only make the best choices available at the time.

The joint steroid injections have little do little of no systemic damage; here's hoping that you can hold off joint damage with those until you find the right drugs.

Finally, look after yourself. If you need to vent there are people here who have an inkling of what you're going through.

All best wishes to you and Lucy,
Andy

loopylou · 16. Jul 2010, 06:05

dear sarah

that is the most heartbreaking story i have read on here. i really feel for you. i struggle enough as it is with PA in my left knee toes and fingers and i think now my left wrist and i've only been diagnosed since oct 09. i cannot even begin to imagine what lucy is going through.

you are right not to let her give up, i really hope that someday soon a treatment will be found that helps lucy instead of making her worse through allergies.

all the best to you and i'm sure everyone else on here will be thinking of you both

lou
-x-

worriedmum · 17. Jul 2010, 16:25

Sarah,
I just replied to you on my thread about JIA in a 4 year old and asked you for details about your daughter, then I read this and I know! I am devestated that Lucy's symptoms wern't spotted sooner - i am certain this must have made a huge difference to her outcome. I can't believe that her sypmtoms were missed by a GP, who faced with a child of that age presenting in such a poor condition shoudl have asked for an opinion from his/her colleagues at the very least! As a GP, faced with something you don't know about yourself, surely it's your duty of care to find out! I am appauled that there was such a delay in diagnosis, but am happy now that you are seeing a proper rheumatologist.
The sad part about having a child with JIA is that we can't begin to understand their pain, their state of mind and anxiety and theres nothing we can do about it. As a mum you just simply want to protect them and take it all away but you can't.
It sounds as though Lucy is pretty fed up. (No surprise given all she has to endure - poor thing) Is there any emotional support from her utside of the family? Is she in touch with any other children with JIA? I know the oung peoples forum on this ebsite offer days out and meetings where young people can get together to support eachother and form friendships wherepeople really understand what they are going through. Perhaps ou have already explored this for her?
I find this site really helpful for getting tips from other parents, but mostly as support for me emotionally, but when our children are so young it is hard to know how to best support them.
I really hope things get better for your and Lucy soon and that there can be some respite for her I am sending you both my love and best wishes and hope you will conatct meif you need to share your thoughts or have a good rant whenever you need it. Take care, both of you and let me know how things progress.
Sam. xxx

lucymum · 18. Jul 2010, 01:53

oh hun i feel for u so much. my little girl, also lucy, has suffered since the age of 2, but was only dignosed at the age of 7!!! we went to dr's for years and no one would listen!!!!
it was nly with the support of teachers at her school that we finally got things sorted out.
lucy has been on mtx since feb and we are starting to see positive results, like your daughter, however, they can not yet asess hopw much damage has been done because of the years of neglect.
i am so sorry to hear that ur little girl is still in so much pain, and is beginig to give up. My daughter has began to have emptional problems because of all this so has to see a counsiler once a week. Maybe it would help your lucy to do the same? Try getting in contact with your local action for children, if you have one, or Sure start, they may know of places to go.
Keep your chin up hun, I know it must be so hard!! I am sending all my love and best wishes. If u ever need a sholder just message me, i'm on facebook too x x x x Sometimes it just helpt to talk to ppl who understand a little of what we as jia parents are going through x x x x

anniesmum · 19. Jul 2010, 14:54

saraht wrote:

hi my name is sarah,

i am here for some help and support as i have a 9 year old daughter who has chronic jia, lucy has it in her jaw, neck, elbows, wrists, all fingers, spine, hips, knees, ankles and all toes.

i will just give you abit of history about lucy and then explain the awful situation we find ourselves in now.

lucy started limping just before her 2nd birthday for no reason, after a couple of weeks i took her to see our gp who didnt know what was wrong with her so sent her to hospital for an xray, the xray showed nothing but we were sent to orthopedicts as lucy screamed if you touched her leg, we spent the next 2 years in orthopedics with no luck, lucy was getting worse but i was told on our last visit that she was going to be referrred to a psychiatrist as in this consultants proffesional opinion it was all in lucys head. we went home and tried to get on with things, lucy was due to start school for taster sessions and i was called in to the school to see the head, i lived in a tiny village and had 2 boys already at the school, they were worried that they would not be able to cater for lucy as by this time lucy permenatly dragged her leg behind her, i had to take her out of playgroup as they could not give her the time she needed, lucy could not run, get on or off the floor and talked so quitely you could barely hear her. i felt like they were accusing me of being a bad mother as i could not tell them what was wrong with her. in desperation i went back to my gp and saw another gp, i sat about 5ft away from him with lucy on my lap and told him what was happening with lucy, he never examined lucy just starred at her on my lap and said your daughter has artritits.
upon examining her and me thinking while he is doind this he has lost his marbles, he gasps and says this child has severe jia and needs to go to hospital immediatly. we were seen within days by a proper consultant who told me that lucy had the worse case of artritits he had seen in years. but did it stop there? no!!! due to the fact that lucys jia had been left un treated for the 2 years we were in orthopedicts she had extreme damage to her hands, feets, knees and ankles..

to date lucy has just been told that there is no more treatment currently available for her, lucy has been on methotrexate for 5 years with a small response, lucy has been on steriods on and off for 5 years which work fab but due to the high doses she has to have they are now concerened that she will develope organ problems, lucy is allergic to anti tnf drugs which she found out after taking etanercept, severe migrianes and infliximab nearly killed her she had anafalaxis luckily we were in hospital and she made a full recovery. we have been on abatercept for a year now and unfortunatly she is not responding well enough to it. lucy also takes diclofenac daily. so where do we go from here her cosultant has never met a child like lucy in 20years and it was clear to see on her face that she is as upset about these turn of events as me and lucy are, we are currently waiting for her consultant to get in touch as she really does not know where to go next, steriods are the answer but lucy has had so many of them already she is worried about the long term damage internally. lucy has come really far in the last 5 years and has had some dedicated professionals looking after her, through physio and hydro and to some extent the medication she has been on she now runs, walks, talks and no longer drags her leg behind her, we know that lucy needs alot of surgery in the future and things will never be easy but my question now is what does the future hold for her now? with no treatment being available suitable fior children its likely she will be permantly wheelchair bound in a couple of years, or alternatlivly go back on steriods and have organ damage later on. lucy said to me that she feels like giving up but i wont let her, when someone tells you that your child does not know what it is like to not have pain it breaks your heart but i will not let artritits break her spirit.

Hi Sarah - what a lucky girl to have such a strong, lovely sounding mum as you. Annie was diagnosed with onset systemic jia in feb of this year, aged 5 and I know how tough that was but not a patch on what you, Lucy and the rest of your family have gone through for years - I am honestly shocked at how horrific it must have been and still is. I am sorry but can only offer a sympathetic ear and echo what others have said about ranting. I think someone else has mentioned perhaps Lucy meeting up with other JIA suffers - the conultant/nurse have suggested this and have local families they are going to speak to that also want to meet up. Arthritus Care do weekends away and stuff like that - may be good for Lucy to find someone her own age to rant to - she may feel less lonely in her pain - poor baby. Take care and make sure you look after yourself. Lucy

saraht · 21. Jul 2010, 04:17

Thankyou all so much for your messages, we used to know a couple of children through hydro but when the hospital closed the pool we lost touch but to be honest lots of children came and went as they got better or moved away. I am new to the website and was not aware of any group activities but i am sure lucy would like to get to know other children, any ideas on how to go about this? she has her last abatercept infusion next week and we still do not know what is going to happen but me and lucy remain positive. take care to all of you.

no more treatment

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