Meds or no meds apparently not parents choice

Niknak · 4. Jul 2012, 05:47

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

theresa4 · 4. Jul 2012, 10:30

HI
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

Niknak · 4. Jul 2012, 13:05

Hi Theresa thankyou for your reply. It's a bloody joke to be honest, and exactly as parents to be basically told if a consultant says they want a child on meds and parents disagree worse case scenario they can get a court order to make you. Now these drugs are powerful and side effects are more than just making your child they feel ill they can be deadly and damage unrepairable. Well my poor girl banged her toe this is how it all began and it swelled and then banged her knee six months later that swelled. What is making me angry and sending me round the bend is thy this consultant has not so much as x rayed her toe and trauma clinic ultra sounded her knee which they said was conclusive to injury. This consultant has done nothing to explain anything. We put nic on methotrexate as we put out trust in consultant but all it has done is make nic catch everything going so she never gets to three months on it due to antibiotics. Now nic has not even been on methotrexate 6 months and consultant was angling for entanercept 3 months ago when nic had only been on methotrexate 3 months and her dad said don't even go there with other meds you haven't even give methotrexate chance to work. The consultant speaks to me like crap, infact when she said entanercept I said what are side effects to which I got I new you were gonna ask that. All I want is things explaining and a bit of evidence to warrant all this medication. Thing is now we don't know what to think as nic hurt her toe when she was two and a half the same time she was a toddler doing toddler things such as tantrums sleeping in day etc, but now nic complains gets up in the night and is tired. But we don't know if this is through side effects belly ache sickness of methotrexate and it disrupting her sleep due to feeling sick cos of methotrexate or if it is Arthiritus related. All I know is this is a living nightmare, I don't claim to be the best mum in the world but I adore my children I live and breath for them. Of course I would give what ever necessary to help Nicole but surely there has to be some balance between side effects illness and quality of life. To be told or should I say try to be bullied with the s word social services is a disgrace. Any advice I need all the help I can get because I will fight for my child's rights xxxx

theresa4 · 4. Jul 2012, 14:07

Get in touch with PALS Patient service and ask their advice I think you need to take someone with you and write things down. Actually write through PALS to the consultant or copy them in to the letter outlining your concerns and that you feel before advancing to further drugs you feel other non invasive non drug test should be carried out ie. xrays, mri, ultrasound and results discussed along with blood results. Get your GP on board too if you can. In fact what does your GP say?? I hope this gets sorted out soon for you and your daughter.
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

Niknak · 4. Jul 2012, 15:11

Theresa, thank you so much you are a life saver, I will do all suggested. I am so sorry to hear you suffer with this terrible illness and your daughter is also un well I send my best wishes to you both.
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

theresa4 · 5. Jul 2012, 02:50

Hope all goes well on Friday, and dont thank me yet I hope it helps is all as thats what I would do as a mum of 4 ages 16, 18,22,24. Dont let anyone think youre doing it wrong all you want is the facts and information to make an informed decision about your childs medical care as shes not old enough to do it herself. Youre not saying No youre saying why first!

Theresa

stickywicket · 5. Jul 2012, 04:04

Hello again, niknak. I see you’ve made arrangements to see a different consultant and I do hope this will help you. We all need to have faith in our consultants.

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.

Niknak · 5. Jul 2012, 09:10

Thanks Theresa and sticky, I will keep you posted.
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

Niknak · 5. Jul 2012, 09:27

It is me again nik nak
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

stickywicket · 5. Jul 2012, 10:53

Don't be too hard on yourself, Niknak. This is a big decision with repercussions either way if you get it wrong. Just list the things you want to ask and then listen carefully to the answers. (())

Niknak · 7. Jul 2012, 16:59

Just thought I would update, had second opinion consultant was brilliant he spent a couple of hours with us explaining everything. So yes my poor girl does have this awful illness and we have decided to change methotrexate from oral to injection as apparently it works better injected any thoughts on this? Nicole is also going to have steroid in her knee under anaesthetic on Thursday. I am upset but now no we need to do whatever it takes to try and control this awful illness. He also said he thinks Nicole copes with the pain as she has has it very young and may think it is normal? I am angry as if the first consultant would have explained everything properly then I would never have doubted the diagnosis and treated the Arthiritus aggressively. Thanks for all your support. Oh he did say that he didn't think nics toe Arthiritus but soft tissue injury looking into that further so that throws psoratic out the window. And he also
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

theresa4 · 8. Jul 2012, 03:22

Hi niknak
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

stickywicket · 8. Jul 2012, 14:09

I'm glad you had a good appointment, Niknak, even though the outcome wasn't what you might have hoped for. I do hope your little one improves on the new treatment. I've not had meth injections as the pills work for me. Among the adults on here (I don't know if it's the same for children) consensus seems to be that, by injecting, you avoid the worst of the side-effects and can usually manage on a lower dose.

Michmack · 8. Jul 2012, 14:15

I'm glad you got it better explained to you. I saw that you said Nicole is up during the night, Kirstie is also up, nearly every night. She as big black rings under her eyes all the time. She also runs and jumps about with her brother and sister, but again she doesnt know any different. Hopefully the methotrexate injections help better than the medicine.

Michelle xx

Niknak · 8. Jul 2012, 17:27

Thanks everyone for your support, I'm hoping as nic gets older she will be able to communicate with me better about how she feels, and that Nicole will also understand her illness and pace her self when she is having bad days. The consultant said methotrexate works better injected and has better results as it does not need to by pass her stomach and can get straight into her system. I am really hoping it works as it hasn't up to now, because I really want to avoid more drugs if it can be helped.

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

Pegsboard · 10. Jul 2012, 16:26

Hi NikNak I've not been on for a while so missed your initial posts. My girl is 3 1/2 and had JIA a long time but only diagnosed in February. She seems to just get on with also, altough she struggles to do everything her peers do it doesnt faze i think shes had pain so long its now the norm fir her. sorry that your first consultant was such a prat! I have nothing but praise for all the team at Leeds General Infirmary but understand your frustration as the medical professionals at my local hospital are hopeless, apart from the wonderful physio.
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

earthspirit · 15. Jul 2012, 14:22

i am an adult with RA but i had it since childhood from at least the age of 3 or 4 along with raynaulds syndrome. i have photos showing the flaring in my knees ankles and wrists, its all detailed in my medical records. i got a diagnosis at the ripe old age of 51 and had a lifetime of intense physical activity and good health. i used face clothes wrung out in cold water and later as i got in control of my own body around 10 or 10 i used wet bandages to ease the pain and soothe the swelling. i used to get into trouble for this...for making things up & pretending i had things wrong with me. i have recently been trawling through old family photos for further evidence of flaring.....i can remember many incidents well and can pinpoint years i had more flares. ive only had one batch of dmards and they made me sick sick sick....now only pain meds though my condition is currently quite severe.

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.

Chelle123 · 17. Jul 2012, 05:07

Hi, I have just read your message about your relationship with your consultant. There has been some great advise on here and I think you are always right to question the need for such medication. As a parent who suffers this condition and the side effects along with there child vital for you to understand the side effects of drugs and the pro's and con's.

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

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