Am I in denial, my three year old had just been diagnosed

Niknak

Hey there, my beautiful 3 year old daughter has just been diagnosed, what started as a swollen toe that I equated to injury and then followed by a swollen knee again I thought was due to a bang, a year later a steroid in her knee and still little fat fourth toe. Consultant wants to start methotrexate but y, I am totally devastated an emotional wreck to be honest. I struggle to believe this diagnosis as my baby girl super active she does not complain of pain. Blood tests normal, toe hasn't been x rayed but ultra sound of knee showed thickening of synovial something or other but that can show in injury as well. I'm frightened to death of meds. Am I in denial can children still be active please help

traluvie

Oh how awful..Your head is obviously all over the place, and too be honest i can't say i know how you are feeling, because i don't..But i have children and i know if they were to have a diagnosis i would be feeling scared,angry,confused,etc..You must not deal with this on your own.Do you have family and close friends you can confide in? Not sure if there are support groups parents can contact, might be worth giving the helpline a call, they will be able to advise you more as i am not familar with this situation..
Although i may not know alot i am here if you want to talk, i hope someone comes along soon to offer you some advice..

dreamdaisy

Hey, it's nice to meet you but I am sorry you have had to find us. Arthritis in children is especially cruel, and I can understand why you are so upset. This is devastating news and I bet all you want to do is sweep up your little one and cuddle her 'til it all goes away. This is not going to go away, but the cuddling will help, of that I am sure.

The meds are a necessity, this is a foul disease and it needs proper meds to bring it under control. On the plus side your girl seems to be carrying on as normal, which is good. The meds are there to dampen the underlying symptoms and to slow the possible progress of the disease so they are important. I guess it's the synovial lining of her joints which is being thickened by inflammation - do the affected joints feel warm or hot to the touch? Please do not research the meds on the interweb, talk to us about them as we are the ones with knowledge and expertise.

I hope you have other family around who can help you through this very tough time - I reckon I can guarantee that you will hear 'She is too young for arthritis.' but you, sadly, now know differently. Talk to your GP, your girl's consultant and also ring the helpline here. They are great listeners and know all-too-well the impact a diagnosis such as this has on one's life. Arthritis not only affects the one who has it, its ripples spread and touch everyone in the family. Your girl will probably be blissfully unaware of the impact of this and if at all possible try not to let on to her just how upset and frightened you are as that may well worry her. I was a seriously ill child (not with this disease) and I just thought everyone's life was like mine - I never once realised the strain my parents were under and I am glad about that.


I hope some parents pop in soon and see your post but as you can appreciate they are busy people! Give yourself time to absorb this news, it is a terrible blow and it takes some adjustment. Look after yourself, I will pop in again tomorrow and see how you are. DD

Niknak

Thankyou so much for your lovely replies, yeah my partner great but he is struggling too, and we have a 9 year old daughter as well it's hard on everyone. It doesn't help that my gp refused to give her meds at surgery for methotrexate told me how dangerous they are and says she's too young active for jia. I'm worried meds will make her poorly when she's so happy, I am totally in love with my baby girl. Seeing consultant Thursday I need some reassurance with this diagnosis meds etc. Her dad my partner is Ill with it. I have asked for her toe to b x rayed is this normal procedure. Still don't get how she is hyper and has this, just want some one to make it all go away x :

dreamdaisy

Just a quick reply as I am out on my feet: GPs know nothing about meth and inflammatory arthritis, it has to be 'left' to consultants and a rheumatology team of nurses. (GPs deal with osteo, a different thing altogether.)

This is a dreadful time for all of you, partner, 9 year old, little affected one and you. I take it from your post that your OH has something similar? Oh I am so sorry Niknak, I have to go, I am cooking (Mr DD due in soon) and my hands are playing up (long and very boring story! ) Rest easy, or as easy as you can: you have found here and here is a good place. DD

worriedmum

Hey there,
I just read your post and had to reply as your story sounds so familliar.
Our daughter Freya was two when one of her toes swelled up. I noticed it was red and fat and asked her if someone had stood on it whilst she was playing, or if it hurt. She kept saying it was fine but eventually i became so worried i asked the gp to see her. She had had something similar in her hand a year previous which had been treated as infection (cellulitis) so gp assumed it was the same and gave her antibiotics. After three more visits, i asked them to X ray it. Then i got a call asking me to pack her a bag and go to the childrens hospital. They kept fobbing us off in a and e saying it was nothing but i asked them to do bloods which showed raised inflammatory markers. They splinted her, in plaster to the knee, sent us home and asked us to come back in 4 days. She was referred to an orthopaedic surgeon who when the plaster was removed, said the toe ooked worse Also her ankle was swollen and by now she was in a bit of pain and with a limp.
A few days later she woke up screaming, couldn't stand/walk so went back to the hospital ad said i wouldn't leave until someone called a rheumatologist - sorry, but i work for the NHS and have a huge respect but no-one else is gonna fight for my child so it;s down to me.- Got a referral to rheumy and were told Freya had active arthritis in her toe, her ankle, her knee and her elbow. Devestated isn't the word! Feel like your treading water waiting for the waves to calm down and they never do...
Freya is now 5, she has had ten joint injections, is on Methotrexate, folic acid, ibuprofen and iron sulphate. She is also about to start Humira injections because she has had uncontrolled Uveitis for over a year and there is a very real threat to her sight.
I can't strress enough how YOU are now the ones who can makea differenc to how this plays out. Enjoy the days when she is active and does what a three year old does, treat her normally and include her in everything. When she is old enough, talk to her about her disease and help her to understand and own it. On the days when she is in pain, be spportive and compassionate but don't let it rule youu as a family. Get used to the endless hospital appointments and accept help with this from family wherever it's offered. It can be axhausting. Be strong in front of her and don't let her see you're scared but don;t feel afraid to fall apart and tell eachother how you feel . Most of all, challange what you are being told, read all you can, get a second opinion if you feel it's needed, trust your instinct and fight for her every was you can.
You no doubt feel scared, disbelief, afraid of whats to come. You should have been told about Uveitis but this is a very real threat which I am just beginning to understand and you need to make sure she enters a screening programme immedicately.
I will stop now, but suffice to stay, i would like to support you on your journey, if you'll let me. (Probably support me too along the wway!)
Stay in touch and let me know hoe things are going. I check in most days so any specific questions i can help with just ask. In the meantime, take great care of you and yours and i wish you all luck.
Sam. xx

Niknak

Hope your hands feel better dd and my other half Ill with worry not the disease sorry for confusion, thanks for support. Sam so sorry to hear your story, I will support u and thanks I need all the support I can get right now. I live in fear another joint will flare up every fall or knock it's horrendous, consultant saying psoratic and living in fear she will get the skin condition also as she dosent have that as yet,nicole that is my little nik nak already being screened for eyes and having physio as they say it's affecting her balance, maybe that's y she falls alot. Still active though good thing, all her bloods fine, surprisingly inflammation markers never risen. Seeing consultant Thursday to start methotrexate my worst nightmare, did your little ones toe go down on it. Does the meds work. I have refused up to now and basically told the consultant I didn't believe her, it's hard when Nicole apart from swelling seems okay. But time to face up and deal with this nasty disease head on. My doc told me for nearly 7 months toe soft tissue injury, it was only in may when knee swelled she got refered, consultant wanted to start her on meds 6 weeks ago but I really felt it was too much, now I am beginning to worry what if I don't , I will let u know what consultant says Thursday. Thank u so much and I wish your little one a speedy recovery xchrissy x

dreamdaisy

Hi Niknak, I hope you are feeling a little better this morning having spoken to us and thank you for the clarification about OH. Bless him, men like to fix things and this cannot be fixed, as such. Men do find this tough but in a different way to women I think.

Hon, she HAS to have the meds. They are the only way to bring this disease under control and to minimise the risk of joint damage. Oh god, this all sounds so scarey, and it is, but this is the time for plain speaking and I do mean it kindly. Methotrexate is not the big bad wolf that many would have you believe, it can be a very effective treatment and the side effects are not guaranteed. I too have psoriatic arthritis (but with only very rare bouts of the skin trouble) why have they mentioned that?

We cannot guarantee what will happen and when and how. Everyone's arthritis is different, and I am sure that must apply to the little ones too. To give her the best chance she needs to begin the meds, she will be carefully monitored so they can assess what is happening and I sincerely hope it is all brought soon under control and your girl can carry on with being three ('cos as every one knows, being three is very important. ) I am thinking of you all. DD

traluvie

Morning NikNak,

Just popped in to see how you are this morning..
I see you have had some good advice..
The consultants i believe are the best ones to talk through meds and that.So any worries you should go over with them..
Although you may feel it at times, you are not on your own,anytime you want to talk use the forum or the helpline..don't deal with it on your own luvie..x

angie1973

Bless, my heart goes out to you. When you have children you just want everything to be perfect for them, and you don't want them to have face things like pain and disease when they are so young.

But kids are amazing little people and they are so full of happiness and love and they adapt to things so much easier than we do, mainly because they don't really know any different at that age, so things will come to them more naturally than it would to you and I.

The love you feel is so deep. I'd do anything for my children and fight tooth and nail for them. You will be doing the same right now.

I hope your gorgeous girl starts to get things under control with the medication. It's a shock knowing this is the path but as DD said, it's a necessary evil to get things under control, and for your daughter to get back to being a toddler again.

You sound like such a wonderful mum, I've no doubt you are her world, and she loves you back just as much.

Take care.
Ange..xx

Niknak

Thanks everyone your support is amazing, I was just telling my friends about u guys and how much better you all are making me feel, gorgeous girl fell again today at nursery, she seems to fall much more than other kids, 2 more sleeps til we see consultant, her and I dont get along, mainly as she hasn't x rayed nicoles toe and I want to know why, and she didn't discuss meds she abruptly told me this is what I'm doing , and I said not until u explain all of this to me and y you're not doing anything. My health visitor says we have been so mismanaged with this, then consultant threatened me with further action if I don't give Nicole meds so as u can see complete nightmare. But I told her I won't be bullied I will do what is best, and the meds have scared me, you are all helping more than u know. So psoratic yes well bewilders I am , originally she said can't say which type has to be assessed over a period if time and less joints swollen in 6 months less severe, now she saying psoratic assuming due to toe, but she has no skin psoriasis and I pray to god that does not happen, so as u can see slightly bewildered, any thoughts on this my lovely new friends. Hope you all feeling well today and all the little ones have had fun at school xxxxxxxxx

Niknak

Also sorry just quick thing the meds, I see hair loss sounds pathetic i know given comparison of disease, but my daughter has the most beautiful curly hair which she loves and worried of pscychological damage if any comes out, is hair loss common xxxxxxxxxcxxxxxxxxcxxx chrissy

dreamdaisy

The meds may be scaring you, and I understand why, but they are there to help your daughter. If you deny her this help you could cause far more harm than good and I very much doubt that you want to do that.

This is no ordinary disease, and it needs extra-ordinary meds. The meds are designed to slow the progress of the disease, lessen the damage to joints and ease the living of every-day life. That is paramount. Your consultant does not sound too good at explaining the whys and the wherefores (she's not alone in that) but she is the specialist, I am sure she knows what she is doing, she has the knowledge and she is the last person you want to antagonise. It is so sad that she seems to lack compassion for you, but we have that. I know you don't 'know' us as such, but I am sure there mums on here can absolutely relate to your feelings and emotions. (I ain't a mum but I was a seriously ill child. ) This is far from easy for all of you, but we are here, yes? As is the helpline. I am thinking of you. DD

PS Just because side effects are listed DOES NOT MEAN they will happen to your girl. We are all different in how we react to the meds, hence the careful monitoring. DD

Niknak

Good evening dd, thank you for your support and advice, you are absolutely right we need to prevent damage and we have decides to medicate for this reason as we are afraid of the outcome if we don't meaning if the disease progresses, I am so sorry to hear you were so ill as a child, and hope you are in a better place now with the disease. We find it hard to accept as nic doesn't complain of pain and never has, lucky in that respect I know, but anyone who we tell the diagnosis to doesn't believe us as she is so active, is this normal. And I know this sounds personal but do you remember your symptoms as a child, as my consultant is saying psoratic but she does not have the skin condition. And most of all thank you and I was kind of hoping you would support me on my journey, as Sam, Tracy and others have kindly offerd and I need as much support as u can get, I won't lie I am frightened, constantly checking her joints and I dont want to believe it, some things are hard as she us three, so sometimes I'm like is this you being three or disease, I mean she can cry out in her sleep she sleeps alot. Then there's shud we immunise against chickenpox but if we do that's post poning meds for another 3 months. My nik nak has only been diagnosed recently because doctor said toe was soft tissue injury and if I'm honest as a mum , mothers instinct deep down I knew summat wasn't right, so there's my own answer I'm in denial. So a year on from toe swelling due to misdiagnosis I want to treat Nicole to give her a better chance, but I am so very afraid, mainly as Sam googled mtx which u wish he hadn't and I wudnt be so afraid if side effects. I'm not much help but any way I can support you dd and anyone else I will try. Thankyou so much hope your hands feel better today chrissy xxx

Niknak

Sorry if post does not read well, typing on my phone and it changed bits sorry x

illihor

My 5 year old has been on MTX for 1 1/2 years (2 in January) and the difference has been good. They then put her on Etanercept along with MTX and this mixture of meds has worked wonders for her. She was 3 when diagnosed although that was a long drawn out process to get the gp to even refer her but that's another story.

My daughter has polyarticular which basically means lots of joints 30+ at last count physio said and they don't want to count any more. I'm surprised they are bouncing psoriatic to you so freely, my consultant is holding back making that diagnosis on my daughter although she showing the signs and her toenails have gone really thick and splitting her skin isn't bad although she has patches that seem to flare up now and again.

I too like you was in denial about it all when the gp first told me what he "thought" it was but had to wait for a paed rhuemy to confirm and just gave us paracetamol and ibuprofen. Once consultant had confirmed it and things got moving I felt so relieved as finally someone was taking me seriously that my little girl wasn't just lazy, and crying for no reason (she also became VERY withdrawn it's taken 2 years to get her talking in school). I still get the looks and "she's too young for arthritis that's and old persons illness" I have to really hold my ground then I get the "well she doesn't look like she has arthritis" no that's because of the drugs she's on to try and hold it at bay so that she can grow up a happy child, and hopefully relatively pain free.

I dread to think where my little girl would be now if these meds weren't around, as she was reduced to a wheelchair, couldn't cut her food let alone eat as it's in her jaw as well basically would just sit there all day crying she now runs around at school, plays just as well as the others although does tire far more quickly than her peers but she laughs and plays and that to me is the most wonderful gift of all.

Michelle

worriedmum

Chrissy,
Right, first thing - stop apologising!!! Don't worry about typing, your abusy mum, don't worry about being bewildered - aren't we all !!
You are under more stress than ever before im guessing and trying to keep the wheels of every day stuff in motion whilst wanting to just STOP and give yourself a minute - no-one gives us this opportunity, so it's a good job the role of mummy is assigned to women, what with the mens pathalogical inability to multi-task and everything...
Some of your questions:
Hair loss- Freya has been on MTX for over a year and like you i was terrified and hled off for as long as possbible. In fact she tolerates it really well, gets a bit of a tummy ache on the sunday/monday after taking it (oral) on the saturday. I have noticed her pony tail is a bit thinner and theres a bit more hair on the brushwhen I brush it but luckily Freya also has lovely thick curls and so it's not really noticable, doesn't come out in clumps or anything.
Meds or not meds - Really, do we have a choice? well we do, but eventually the threat of joint distruction or in Freyas case, sight loss is such that you beg for meds! Seriously, have come full circle about this one myself and now consider the risks of not intervening and treating aggressiveky and early is much more dangerious than doing so. They are so well screened, blood tests drive Freya nuts but she knows as I do how important it is.
Where in the country are you? Do you go to a childrens hospital, rheumy regional centre? Make sure you are getting proper help and if not, ask them to refer you to a specialist in paed rheumatology, even if it means travelling.
Freya is also very active and people are forever saying there isn't mch wrong with her cause she does whatever a 5 year old does! Drives me mad though cause they don't see her mid flare, hobbling to the bathroom first thing in the morning. However, between flares she is great and no-one would know. Her toe, by the way was ine=jected, and a nother one a coupke of years later, with good result. Her joints flare with a temp/sore throat or cold etc and ofetn goes away with the infection but if it sticks around after the cold or whatever is gone, it usually needs injecting.
Freya has extended oligo-articular arthritis and is ANA positive.. How have they diagnosed Nicole with psoriatic in the absence of skin complaint? Not suggestiing they are wrong, just curious...
Hope this helps and im glad you've had so many great responses. Keep in touch ad let me now how she goes. Take care of you and yours and stay strong. Thinking of you
Sam. xxx

Niknak

Thankyou so much for sharing your story and bless her kitten cotton socks , so pleased to hear she is much better now. Yes my consultant is saying rather alot, yet surely to hard to be specific. I am in Manchester, I want to change hospital but nearest is Leeds or Liverpool for this condition and it just isn't practical. She wants to give meds because of toe. I really struggle as I hear what an improvement all the children have made on methotrexate, my confusion lies with the fact that my daughter is active it isn't hindering her running round. All of which I am going to ask consultant Thursday. But thank you so much Michelle, I thank my lucky stars and fingers crossed it's only 2 joints. Your daughter is a very brave little lady. When I started reading your story it brought a tear to my eye, but a happy smile to hear she can run round and play x

Niknak

Hey there Sam, I'm glad Freya on the mend, you sound like you cope so well and her eyes how are they now. Nic started with swollen toe last august I thought she banged it, doctors only refered her when knee swelled both right side of her body, again thought knee was injury. So may this year bloods ultra sound of knee not toe though, bloods normal ultra sound showed thickening. Steroid injection in knee and toe august, knee went down but consultant said she only managed to get a bit in toe, toe still swollen so now wants to start methotrexate. All based meds on fat toe. I'm in Manchester so at children's specialist hospital. I dont know how can she say psoratic so early on, think her toe shud be x rayed what if toe summat else, oh here u go again denial. I'm going to see consultant Thursday so ile keep you posted much love thankyou chrissy x

traluvie

NikNak,

I am happy to see you have had some replies from moms, people who know exactly what your going through..Hope that has helped alot..

Although i am not a child i amaze myself at how active i can be one minute and not the next..You wouldn't believe i was bending myself backwards singing marilyn monroe's happy birthday to my oh the weekend and today can't walk...Being a child i think they cope with things really well, maybe your daughter is active because she doesn't feel the pain as you suspect?? She is still young and probably doesn't realise the full extent of whats going on,??Starting the meds should slow the process down so she can lead an active life.I understand your fears regarding the meds.I take a whole cocktail of drugs with lots of side effects, but the only one i really notice and that affects me is dry mouth and constipation,..If someone was to suffer too many side effects that was causing problems then they would stop it and try and alternative.
I hope the appointment goes smoothly, get that list of questions and worries written down ready to ask..Will be thinking of you..x

Niknak

Thankyou Tracy, I'm sorry you suffer, and you must make the most of good days, Thursday can't come quick enough to see consultant. I'm so glad I have found this site everyone is so helpful and supportive. My other half struggling Like today she fell over and her knee is up a little bit, he was angry blaming school but school cant stop her. I remember the day they utterd those horrific words, he sobbed all day, we've been together 12 years and I have never seen him so upset. I just want to start the meds now, thankyou so much and take care I will keep u updated xxxx chrissy x

illihor

Good luck with your appointment today, hope all goes smoothly and don't forget to bring your list of all your concerns/points you want to raise with you I always forget at appointments things I wanted to say lol

Michelle

baby

Hi,

It's a hard diagnosis to deal with. Like your daughter, my daughter was still extremely active just before she was diagnosed, even though her right knee was 3 times it's normal size! Even when she's having a flare up she is still quite active, though she will rest when she feels she needs to as the last few flareups have actually caused her to tell us she's hurting.

Eithne was diagnosed in April 2010 and including the injection she had then, she has had 3 sets of injections (in both knees and left foot) and is due for her 4th injection on Monday. There is also a lot of talk by the specialist nurse that she really needs to be put on permanent medication, even though she doesn't appear to be affected every day by the JIA.

Don't be afraid to ask as many questions as you need to. Your daughter's rheumatologist and their team, are the best people to help to reassure you.

Use the forum as well - I haven't used it much but I do use other forums quite a bit and find them very helpful.

*HUGS*
Arianna

Lyndz

Hi, through reading your posts my heart goes out to your daughter. Have they decided what meds she is going on? ?I am on mtx and humeria additional i take solpadol for pain control,anti-inflammatory's and pills to protect my stomach. I must admit the meds are horrible and I have not tolerated them well over the last 6 years however i have remain stable most of the time which is great. With regards to hair loss i did lose a lot of my hair 5 years ago after suffering a large flair up however it grew back and is now down to my waist again.
To reassure you, although this is a horrible condition i am positive that your daughter will live a full and active life....i got diagnosed during a crucial time at school however i have now graduated as a teacher and have a vibrant social life. Times do get hard however when meds are stable there is no reason that you should not live life to the full
if you have any questions about meds or anything don't hesitate to contact. x

catherine22

Hi, I hope you're appointment went as well as possible and you managed to get your point of view across.

I wanted to try to put you at ease a little about methotrexate, my son was diagnosed with oligo arthritis at age two and had steroid injections which worked for a bit before it came back in lots more joints including his toes. (by the way i know about feeling guilty, ignored a intermittently limping boy for ages, refusing to carry him as i was 8 months pregnant and thought he was being lazy - oh the guilt) He was still really active and never complained of pain. So a year a go (now aged 5) we started on methotrexate, which we really didn't want to do but the consultant said that the damage would be much worse if more flare ups occurred.

So, so far no flare ups in a year. No hair loss or any of the other side effects that they warn you about, except recently a bit of nausea lasting 24 hours which is reduced with an anti-sickness medicine. Monthly blood tests for any problems with the liver are fine. He's still a very active little boy and you wouldn't know he had arthritis, he keeps up with his school friends and plays football and goes to swimming every week. I still wish he didn't need the methotrexate but if it works the positives will far out weigh the negatives.

If they are sure its arthritis they wouldn't routinely x-ray any of the joints, and it doesn't help with diagnosis. It does sound strange to diagnose psoriatic arthritis without any skin problems (any family history of it). Did the steroid injections work? has the swelling reduced? If it has why not have the chicken pox vaccination to buy you a bit of thinking time and see how her joints are in that time. Our consultant only put my son on methotrexate after it went to more joints, although i do know they said it was more significant if it was in the smaller joints like toes. Your GP is clearly not helpful at all, ask the consultant to write to the GP for the medicines to be prescribed.

You have to trust the consultant as its hard enough without doubting their expertise, if you really don't trust them it would be worth asking for a second opinion, either from a different consultant or different hospital even if its just for the diagnosis then go back to them if its confirmed.

Sorry realised i wrote a whole essay. Keep in touch.

Catherine

Niknak

Hey there everyone thanks for all your great advice and support, so consultants appointment. Asked all the questions I wanted to, and suppose I can't deny the fact she has had swollen toe and knee. I still think she is being presumptuous saying psoratic. None the less the steroid injection did nothing to fat toe, and I'm lucky that gorgeous girl still active. Although reading different stories and the added fear of what could happen and the damage that could be done, I give in so methotrexate it is oh and predisonole if that's how u spell it steroids for four weeks while mtx kicks in. Consultant also thinks her ankles and other knee stiff, but touch wood not swollen. Still struggle with diagnosis as I have a hypo child but I'm also aware flare up things can change anytime . So frightend of the Meds and side effects she is taking it liquid form. So as soon as she gets over cough we start the meds. I don't know what to expect and pray she tolerates them. Also is it common for her not want to wear clothes she says they hurt? Chrissy x