my two year old has just been diagnosed with JIA

mythree

My 2yr old daughter started having problems in december she was walking around as much as usual and then in january of this year she refused to walk. Her right knee had swollen i took her to AnE and was sent away after 3 xrays an ultrasound a stay in hosital and 6 referals later we were referred to a peadiatric rhumetologist and have finally been diagnosed.
She has to have an injection into the knee and physio because one leg is now longer than the other and she has muscel damage.
because she is only two she cant tell me anything so I would love if someone can tell me what happens now? :?:

elnafinn

I am very sorry to hear about your daughter. If no one answers your thread I would phone the helpline because there is a number that can be called especially for parents of children with arthritis. There is also an email address and postal address. I expect there are some booklets they would be able to send you too. I saw the information on this site but cannot actually locate it now. It was called source. If you phoned the number at the top right hand corner they would be able to advise you, pass you on to the appropriate helpline very quickly.

I really wish I could help you. I so sympathise. My children have flown the nest now but I do have a 9 month old grand daughter whom I absolutely adore.

Luv
Elna x

mythree

yes thanks a lot i have just started phoning them all the are really good they are going to send me a lot of info, the best i think is the information on the hospital treatment might make it easier on my 7 yr old.

elnafinn wrote:

I am very sorry to hear about your daughter. If no one answers your thread I would phone the helpline because there is a number that can be called especially for parents of children with arthritis. There is also an email address and postal address. I expect there are some booklets they would be able to send you too. I saw the information on this site but cannot actually locate it now. It was called source. If you phoned the number at the top right hand corner they would be able to advise you, pass you on to the appropriate helpline very quickly.

I really wish I could help you. I so sympathise. My children have flown the nest now but I do have a 9 month old grand daughter whom I absolutely adore.

Luv
Elna x

suzster

hi, sorry i didn't reply, i will admit your post really upset me, maybe because i have RA and know how painful it can be and because i have a 2 yr old and can't imagine what your little one is going through.
i'm sorry i can't offer any advice but please feel free to message me if you need to talk.
again i'm sorry i really wasn't ignoring your post.
i hope they help you out and that your little one and you are ok?
sue

mythree

honsetly dont worry we all coming to terms with it now she has good and bad days but you have to try and get on with it especially with two other kids but we have had tons of support just wish family members would be a bit more supportive but thats family!!! thanks xxx tan

suzster wrote:

hi, sorry i didn't reply, i will admit your post really upset me, maybe because i have RA and know how painful it can be and because i have a 2 yr old and can't imagine what your little one is going through.
i'm sorry i can't offer any advice but please feel free to message me if you need to talk.
again i'm sorry i really wasn't ignoring your post.
i hope they help you out and that your little one and you are ok?
sue

elnafinn

Hi Tan

I think you are doing really, really well. As they say you cannot choose your family....... I am pleased you are getting good support from elsewhere. You know you can always post on here. People are looking out for you here too, with moral support at least, as unfortunately we cannot do anything else.

Luv
Elna

mythree

thanks moral support is the best and definatly what the doc ordered !!! xxx tan

elnafinn wrote:

Hi Tan

I think you are doing really, really well. As they say you cannot choose your family....... I am pleased you are getting good support from elsewhere. You know you can always post on here. People are looking out for you here too, with moral support at least, as unfortunately we cannot do anything else.

Luv
Elna

konnie

hi mythree. my 2 year old daughter has just been diagnosed with oligoarthritus in both knees too. She cant weight bear at all at the moment and it's quite distresseing to watch her pull herself around the floor on her hands and stomach

She is going to have knee injections tomorrow. Has your daughter had this proceedure yet? Was it successful?

My daughter has also been prescribed naproxen which tastes absolutely foul and i cant get her to take it. Has anyone got any tips?

page35

Hi konnie
could you put sugar in the naproxin or some chocolate drops/powder. might be best to ask gp or pharmacist before you do just incase.
Or may be you could put it in some juice?

funkym

hello tan
firstly lovely forum u will get right support sad to see your little un having arthritis ,my mum had it from 3 years old .all best

dobbie

Hi Tan

I'm sorry to hear about your daughter, I was also diagnosed with RA as a child.
You say your daughter had physio, does she have hydrotherapy?I had weekly sessions as a child and as well as being fun it really helps with your joints.

Sarah x

bexmum

Hi there, I'm new to this forum but not new to watching a child cope with arthritis, sadly. My 12 year old daughter was diagnosed when she was 3 and I still shudder when I think of the shock and grief of those early days. However, we currently have a bit of a success story going on. After not brilliant care at the local hospital for several years we finally were transferred 2 years ago to the paediatric rheumatology clinic who are just ace. She had to have 70 joint injections 18 months ago followed by a top up of 5 more 8 months later and is on oral mtx. And currently you would hardly know she has the disease! On top of which she is an incredible strong minded, kindhearted little person (with whom you CANNOT win a debate...). We've just dropped the NSAIDs after 9 years of them and we will see how she gets on. My recommendation to any parent is FIGHT for referral to a specialist as the earlier the treatment is started the less damage is done. She has 8 years of damage to contend with but copes very well - pure determination!

elnafinn

A very warm welcome to you. Your story will give hope to others in a similar position. You and your daughter really have been through it together. I cannot believe what it must have been like to have all those injections. It is so good to hear that in the end your daughter got the care and treatment she needed. That is what is so awful about this when one cannot get the right medical attention.

Sounds like you have one great daughter out there and this seems to have made her all the stronger mentally. She will go far and my very best wishes to you all.

Love
Elna x

bexmum

Thank you for the warm welcome Elna. I DO hope her story gives others hope - the things we have gone through, the ups and downs - the lack of a cure...Over the years we have tried diet, homeopathy, massage, spiritualism while at the same time being on NSAIDs. It has taken the joint injections and mtx to get her to the physical place she is now and I would say to any parents faced with that choice for their child to go for it asap even though the suggestion makes you feel emotionally like that 10 ton truck is heading for you again......Without them she would now be in a wheelchair. The day after the 70 joint injections she SKIPPED downstairs! (Despite looking a little like a well-worn pincushion from her toes to her jaw!)

jellybags

Hi, My 15 month old girl was diagnosed with arthritis 3 weeks ago. She has it in both knees and right ankle. She is pretty bad in the mornings just now and is unable to weightbear. After some excercises and a hot bath she comes around. However , i am worried as her left leg is now shorter than her right as her knee is so swollen . she is going in to hospital this wednesday for a general anaesthestic to have both knees and ankle injected with steriods. Dreading it !! The only things keeping me sane just now is the hope that the injections will put her into remission and it will never come back . I know that is a little naive but the thought of her in pain for the longterm is unbearable . Finding it really hard to come to terms with. I know i should be positive and i really try but all i do just now is think about it.

bexmum

jellybags wrote:

Hi, My 15 month old girl was diagnosed with arthritis 3 weeks ago. She has it in both knees and right ankle. She is pretty bad in the mornings just now and is unable to weightbear. After some excercises and a hot bath she comes around. However , i am worried as her left leg is now shorter than her right as her knee is so swollen . she is going in to hospital this wednesday for a general anaesthestic to have both knees and ankle injected with steriods. Dreading it !! The only things keeping me sane just now is the hope that the injections will put her into remission and it will never come back . I know that is a little naive but the thought of her in pain for the longterm is unbearable . Finding it really hard to come to terms with. I know i should be positive and i really try but all i do just now is think about it.

Hi jellybags, I'm sure so many of us understand your emotional turmoil. The first few weeks after diagnosis are horrible, you feel numb, in shock, angry, questioning why. I remember going into overdrive researching the disease, especially looking for prognosis clues - and there aren't any. Nobody can tell you how your childs arthritis will behave, you just hope it will go away. From my experience, please don't be afraid of the steroid injections.It was definitely the best decision we made for my daughter and I sincerely wish she had been under the care of the consultant who gave them to her since she was diagnosed at 3. As it was, she was 10 when she had them and has to contend with years of prior damage. yours daughter's injections should relieve the pain and swelling and she should start to progress well. I will keep my fingers crossed and you both in my heart. Keep us posted. Dee xx

elnafinn

bexmum wrote:

jellybags wrote:

Hi, My 15 month old girl was diagnosed with arthritis 3 weeks ago. She has it in both knees and right ankle. She is pretty bad in the mornings just now and is unable to weightbear. After some excercises and a hot bath she comes around. However , i am worried as her left leg is now shorter than her right as her knee is so swollen . she is going in to hospital this wednesday for a general anaesthestic to have both knees and ankle injected with steriods. Dreading it !! The only things keeping me sane just now is the hope that the injections will put her into remission and it will never come back . I know that is a little naive but the thought of her in pain for the longterm is unbearable . Finding it really hard to come to terms with. I know i should be positive and i really try but all i do just now is think about it.

Hi jellybags, I'm sure so many of us understand your emotional turmoil. The first few weeks after diagnosis are horrible, you feel numb, in shock, angry, questioning why. I remember going into overdrive researching the disease, especially looking for prognosis clues - and there aren't any. Nobody can tell you how your childs arthritis will behave, you just hope it will go away. From my experience, please don't be afraid of the steroid injections.It was definitely the best decision we made for my daughter and I sincerely wish she had been under the care of the consultant who gave them to her since she was diagnosed at 3. As it was, she was 10 when she had them and has to contend with years of prior damage. yours daughter's injections should relieve the pain and swelling and she should start to progress well. I will keep my fingers crossed and you both in my heart. Keep us posted. Dee xx

Dear Jellybags

I have just read your thread about 10 minutes ago and saw that no one had yet replied but I now see that Dee has and what a relief that is to me. I was going to post but it is so good that someone in a similar position has got in touch with you.

I am so saddened when reading about these little ones being diagnosed with "arthur" and also those that are older but still so young if you know what I mean. It breaks my heart so goodness knows how you all manage to keep buoyant. We do find this inner strength, though, don't we?

As Dee says, your little one is getting the correct attention now. At the moment on the forum there are a few of you mums in similar positions and I do hope you will keep in touch and support each other in this.

You know that you can Private Message on here which is a very useful asset.

There is also the Helpline that you can telephone, number at the top of the screen or you can post a thread to them on the Helpline zone.

I send you both lots of love and hugs and strength to cope with the situation. Please let us know how your children are getting on, if you feel like it and have time.

Elna x

jellybags

bexmum wrote:

jellybags wrote:

Hi, My 15 month old girl was diagnosed with arthritis 3 weeks ago. She has it in both knees and right ankle. She is pretty bad in the mornings just now and is unable to weightbear. After some excercises and a hot bath she comes around. However , i am worried as her left leg is now shorter than her right as her knee is so swollen . she is going in to hospital this wednesday for a general anaesthestic to have both knees and ankle injected with steriods. Dreading it !! The only things keeping me sane just now is the hope that the injections will put her into remission and it will never come back . I know that is a little naive but the thought of her in pain for the longterm is unbearable . Finding it really hard to come to terms with. I know i should be positive and i really try but all i do just now is think about it.

Hi jellybags, I'm sure so many of us understand your emotional turmoil. The first few weeks after diagnosis are horrible, you feel numb, in shock, angry, questioning why. I remember going into overdrive researching the disease, especially looking for prognosis clues - and there aren't any. Nobody can tell you how your childs arthritis will behave, you just hope it will go away. From my experience, please don't be afraid of the steroid injections.It was definitely the best decision we made for my daughter and I sincerely wish she had been under the care of the consultant who gave them to her since she was diagnosed at 3. As it was, she was 10 when she had them and has to contend with years of prior damage. yours daughter's injections should relieve the pain and swelling and she should start to progress well. I will keep my fingers crossed and you both in my heart. Keep us posted. Dee xx

Hi Dee ,
Thank you for the reply. Glad that your wee girl is getting on well. She has been through so much. Had a bad night with Emma last night , up until 4am. She was rubbing her wrists which has me worrieed. I am grateful that i have a great team of docs looking after her and that it was only 8 weeks ( been to GP twice) from symptoms to treament. I took her straight to the childrens hospital A/E and got referred to rheumatology within 5 days. Feeeling very teary today . Need to get a grip of that !! Think it is just tiredness. Anyway , iam off work till the weekend after today so i can focus on Emma. Thank you again for you kind words and best wishes. I'll let you know how wednesday goes . Majella x

jellybags

elnafinn wrote:

bexmum wrote:

jellybags wrote:

Hi, My 15 month old girl was diagnosed with arthritis 3 weeks ago. She has it in both knees and right ankle. She is pretty bad in the mornings just now and is unable to weightbear. After some excercises and a hot bath she comes around. However , i am worried as her left leg is now shorter than her right as her knee is so swollen . she is going in to hospital this wednesday for a general anaesthestic to have both knees and ankle injected with steriods. Dreading it !! The only things keeping me sane just now is the hope that the injections will put her into remission and it will never come back . I know that is a little naive but the thought of her in pain for the longterm is unbearable . Finding it really hard to come to terms with. I know i should be positive and i really try but all i do just now is think about it.

Hi jellybags, I'm sure so many of us understand your emotional turmoil. The first few weeks after diagnosis are horrible, you feel numb, in shock, angry, questioning why. I remember going into overdrive researching the disease, especially looking for prognosis clues - and there aren't any. Nobody can tell you how your childs arthritis will behave, you just hope it will go away. From my experience, please don't be afraid of the steroid injections.It was definitely the best decision we made for my daughter and I sincerely wish she had been under the care of the consultant who gave them to her since she was diagnosed at 3. As it was, she was 10 when she had them and has to contend with years of prior damage. yours daughter's injections should relieve the pain and swelling and she should start to progress well. I will keep my fingers crossed and you both in my heart. Keep us posted. Dee xx

Dear Jellybags

I have just read your thread about 10 minutes ago and saw that no one had yet replied but I now see that Dee has and what a relief that is to me. I was going to post but it is so good that someone in a similar position has got in touch with you.

I am so saddened when reading about these little ones being diagnosed with "arthur" and also those that are older but still so young if you know what I mean. It breaks my heart so goodness knows how you all manage to keep buoyant. We do find this inner strength, though, don't we?

As Dee says, your little one is getting the correct attention now. At the moment on the forum there are a few of you mums in similar positions and I do hope you will keep in touch and support each other in this.

You know that you can Private Message on here which is a very useful asset.

There is also the Helpline that you can telephone, number at the top of the screen or you can post a thread to them on the Helpline zone.

I send you both lots of love and hugs and strength to cope with the situation. Please let us know how your children are getting on, if you feel like it and have time.

Elna x

Thank you Elna for your reply. Its good to chat with othe mums in similar situations. Just waiting for Emma to get injections now and hope that she will respond to them . Will keep you updated. Majella xx ( Jellybags ) !

steph120786

Hi sorry for late reply am fairly new to this site and only just seen this post,

you are not alone seem there are a few of us with kids, I am so glad i found this site as it helps to speak and get support from people who really understand.

My Daughter was 18 months when diagnosed has had 15 joint injections under 5 lots of general anesthetic, been on mtx for a year orally but just switched to injections.. as previously said all these things are daunting but take them as soon as offered as they do help to control it although my daughter has had flare up on meds she can actually walk now i would even want to think about things off meds,
I feel it is a case of taking every day as it comes as it is so unpredictable but stay strong and fight..

all my love steph xx