Hey everyone, I have not been on here for a while/ I originally posted am I in denial rebating my gorgeous girl being diagnosed with juvenile arthritis. I'm not in denial but I syllable don't get how my Nicole is so active when the consultant wants to pump her full of medicine that I feel the side effects make her ill not the Arthiritus itself. So to cut a long story short. Nicole was diagnosed a year ago when she was three, put on methotrexate which hasn't done anything as according to consultant it's not working, however, it is suppose to take up to three months to get in your system and six months to have full benefit. But nic never gets to three months as she always ends up on antibiotics due to side effect of low immune system/ now consultant wants to add etanercept and I have said no. Mainly due to the side effects and the fact the consultant hasn't explained why she warrants it. My gorgeous girl can out run most 4 year olds dosent complain of pain. But this consultant says if I don't do as she says she will ring social services as I won't medicate . But I am medicating she is on methotrexate and just because I am questioning what when where and why..... What I should be bullied into it. So now I am going out my mind and I have asked to be transferred to another consultant for a second opinion/ Nicole has had this since she was 2 and a half but my go was a waste of time. It has always been hard to compare how she is to a child of the same age because she has done her funny little things for a long time. Could she have really built a tolerance. Nicole is always tired she still sleeps like a toddler. Now I don't know which way to turn because it's like a living nightmare, and to find out you really don't have that much say when it comes to medication is beyond belief. So sorry to ramble
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I dont know much about JRA but to tell a parent they are not in charge is questionable to say the least. I would dig your heels in and demand another consultant opinion. Ask them for a Patient centred meeting to discuss with you the results of bloods, scans etc..... and their reasoning for wanting to further medicate your daughter based on these facts. The fact shes always tired suggests somethings not right but you need to know why they want to medicate with such strong drugs at sucha young age. Although I know its not unusual I would want all the information and risks before I would let my child have anything. Keep a diary of your daughters days where possible so that can be added to the meeting.
Good Luck
Theresa
Theresa xxx
Its not as bad but my daughter hhas inherited my thyroid condition and I had to push to get her checked out properly in paeds although my GP was great. the last thing I wanted for my 14 year old was to have a thyroid condition but she has and so she has to take meds for life she was ok about it . As a parent we have to protect our kids from harm and that includes the drugs they are offered for medical conditions too. I dont like the biologics they make me ill all the time Im currently not on one but my Methotrexate Ive been on 6 years now and on the MTX day I feel sick and stay in bed and try sleep it off. Without it I cant walk with it I cant do much either but there is a difference to my life with it. A 4 yr old cant really make an informed decision like we can so its up to a parent to do that for them. My plan of action woould be
1. speak to my GP to be transferred to new consultant and get them on board.
2. keep a diary of your daughters daily .life
3. write a letter to PALS and consultant demanding xrays, etc.....
4. Go armed to appointments with someone else if possible diary, and concerns and ask for supporting evidence that your child has the condition and is worsening. (these woould be the xrays, mri, scans bloods)
It seems madness as Im sero negative RA and have had to fight to get my diagnosis and treatment and other adults are still fighting as the results of scans, bloods etc are negative or inconclusive and are not receiving treatment yet here we have a 4 yr old having it practically shoved down her throat before doing any extensive tests and examinations??????? surely children need more before giving them these drugs, that we as adults with the condition are scared of taking.
Good luck
Theresa x
Theresa xxx
I am going to do as you suggest with pals.
I have demanded for Nicole to be transfered to the other rheumatoid consultant at the hospital, her appointment is Friday I am very anxious about this, but thank you for your advice in asking for further tests and explanations you are absolutely on the ball and I shall take your advice and go armed. I am fortunate that nicoles dad my other half is amazing and supportive whilst also feels the way I do regarding what consultant says.
He is alot calmer than me im goig to write everything down and let him do the talking, as to be honest I'm that mad right now I don't want to jump the gun and fly of the handle at the new consultant
I am worried though as I'm hoping that they don't all pee in the same pot so to speak and we get his opinion and not other consultants opinion fed via the new one
Then there is the fact new consultant will have to rely on the past of old consultants notes of nicoles previous inflammation and meds as he has never seen her before and Nicole has now had this if it is the a word for 18 months.
But I am going to push for MRI
Thank you so much
Xx
Theresa
Theresa xxx
However, I’ve just read through your earlier thread and to me – with no diagnostic qualifications but 51 years of arthritis behind me – she does seem to have some form of arthritis. She sleeps a lot and falls a lot, has swelling which is worse when she falls but is relieved by steroid injections. I do understand that she’s otherwise active and doesn’t complain of pain but kids are often like that. She could be so used to pain that she regards it as normal. Most of us do after a while.
Anyway, keep the appointment with an open mind. If your little lass does have arthritis it doesn’t much matter whether it’s juvenile RA or psoriatic insofar as the treatments are virtually the same. And new research and treatments are coming out all the time. And we will always be here to support you both.
I am not saying nic doesn't have jra, what I'm saying is little has been done to say other wise, the swollen knee and toe were both injured separately, no test such as MRI bone scan has been done and nothing has been done at all to her toe looked into. I think you have to be a hundred percent sure before giving a tiny girl potent meds without further investigation. Arthiritus can mirror Other illnesses, this consultant has explained nothing even though we have questioned, her bloods normal,
This is a consultant who told me to give nic 10 mil of ibuprofen three times a day for 3 months. any way my doctor contacted the consultant disputing diagnosis and we tool nic on holiday for 2 weeks, we then were asked to go back to consultants to which she said oh the ibuprofen is working her knee is right down, to which I said well she hasn't had the ibuprofen as u should no as my go contacted u.
So as you can see I'm having a hard time accepting anything.
If this consultant says it is then I will be asking why how etc, and if he says entanercept I will ask why benefits etc, Nic already on methotrexate but having nightmare with that. I need re assurance. I don't want my baby to have this, but I will and would do anything to keep it at bay active in nic
What's upsetting is the way we have been managed I need to have trust in the consultant, I am hoping tomorrow gives answers and we can move forward.
Sorry to ramble I am very anxious about tomorrow.
I love my little nik nak so very much xxxxx
I have just read my other post which I posted last year
The post am I in denial my three year old just been diagnosed
Omg I am doing it again aren't I
I wobbled at methotrexate and then decided to give it
I am doing the same thing wobbling at entanercept
I don't want to keep wobbling I want assuring and trust in consultants
I feel like I'm going mad, it all rides on tomorrow and if this consultant agrees with the first I am
Going to have to get a grip
Said he wouldn't consider entanercept as she doesn't have enough joints effected. But he did say nic tired due to condition and that being in pain is draining. He also upped her folic acid to three times a week, xxx
I'm glad you had a good appointment sorry about the diagnosis though. At least now you understand more about her illness, funny all it takes is a bit of time for someone to explain. It makes all the difference to how we feel. Sorry only short reply having a bad day today
You're in my thoughts
Theresa
Theresa xxx
Michelle xx
Theresa I am so sorry you are not good sending you lots of love and speedy recovery , does this weather play havoc with Arthiritus because we recently took nic on holiday to Cyprus and the sun seemed to help, but since the weather has been like this she has been complaining and I'm wondering if it's connected xxx chrissy
Grace has had 4 methotrexate injections and seems ok on them at the mo although it's not pleasant administering them.
She's had 2 rounds of steroids under anasthetic and they were a great help.
Hope your girl feeling better soon and you too.
Take care
Zoe
anyhow the point of writing the above is to let you know its not all bad but i am so so sorry that some or most of you are in the position of giving meds or risk social services etc. this is a truly awful situation for any of you to me in and i just wanted to say you had my support and a bit of my heart going out to each of your children. i dont ever read any of the things on the childrens sections but something made me click on today and i saw this post.
there isnt anything i can do to help you and there is no advice i can give other than to say you need to really fight the system if you are having doubts about meds your children are receiving. i have gone 50 years with no treatment and i have virtually zero joint damage. they dont know who will get deformities and that is why everyone treated the same way.
if any of you are ever campaingning against meds or need an adult "survivor" of childhood RA then i am more than happy to speak out on your side. my medical notes clearly show i did have the disease but i was otherwise too healthy and latterly didnt complain enough to receive a dx and treatment. (in many ways i feel lucky i didnt get dx as i now feel almost bullied or intimidated into taking them)
in no part of this post am i implying that people should not give their children the treatment as advised by doctors as that would be morally wrong and as a professional homeopath would be ethically wrong, even evil to try to to influence people in this way, regarding their childrens health.
i just wanted to show support for the position you find yourselves in and wish you and all your kids the very best for the future.
As a student OT and after a recent placement in a rheumatology clinic I feel you are quite right to ask questions and be given a choice.
It is possible that your consultant is suggesting the right treatment but possibly needs a lesson in personality and bed side manor. It is important that patients and health care professionals form a partnership and can work together and this is the ethos generally across the health service these days.
Hopefully you will be pleasently surprised by the difference a change in consultants can make and I wish you all the best.
My gorgeous 14 year old son has just been diagnosed with Systemic JIA and even with my knowledge it is so hard to make the right decision. Even as a health care professional myself it is a completely different ball game when your own child is involved. I am totally devastated and my head is spinning with information about medication and quality of life for our whole family.
All the best
Chelle