Please Help xx

livinginhope

Hi Everyone,

My 13 year old son has been recently diagnoised with
Arthritis
Dactyalitis
and possibly connective tissue disease, however awaiting bloods!

He also has
Aspergers
Severe Asthma
a wee touch of eczema

Our emergency appointment was in JUST days before christmas, and his consultant (who is lovely, and very education focused) whilst scanning him discovered tumours.... Her words were oh my, this isnt good, there are tumours here and called her registrar in and another Dr.

My son in turn looked at me and said what does that mean, I burshed it off saying it could be cysts, however he said she would have stated cysts, not tumours.

I rang the hospital last week, to see if any results were in, and the Drs PA, told me that his Bloods need to be done again, I asked why, and she told me that something may have happened to them, or they may have had a contamination, or indeed something could have happened in the lab! She asked me to ring back on Monday past so that she could update me further. I rang on monday, and she was off i rang today and she is still off, but apparently will be back this Monday coming!

My Son is allergic to ibuprofen, diclofenac sodium and a range of other anti inflammatories His chest tightens within 30 mins

Oun next appointment is on the 30th Jan, but he is in so much pain, his hands are swollen, he can hardly bend his fingers, his knuckles are purplish/black. His knee is swollen and sore, and one of his toes is quite inflammed, and hot to touch.

My heart is broken for him, he is overthinking things, he said the other night, he has all the A's Asthma, Aspergers and Arthritis the B's were starting now too, as he got braces on the 14th December the next letter is C, poor pet cried and through sobs said mummy i dont want to get C**cer.... My son just fell apart, and I did too, not infront of him tho.

Today, we went to see our GP, who prescribed paracetamol, 0ne 4 times a day. I spoke to him about the pain, and my son also told him he had a sore ear, so the Dr looked in his ear, and he said, ach poor you, your not having a good time at the minute, my son said to him, nothing is going good for me, everything bad seems to happen to me.

I am torn, do i say, come on, we can deal with it, it will be rough until we know exactly whats going on. Or do i seek some sort of professional help?

dreamdaisy

I've replied on your other thread. I am thinking of you both. DD

elnafinn

I can see that you are on line, dear livinginhope. Oh, I am so sorry to read your thread. You must be heartbroken and trying to be strong for your dear son at the same time will need such strength. I do not have any suggestions for you unfortunately, I wish I could say something that would be of comfort to you both. The only suggestion I can make is that you call the helplines - number at the top of the page - on Monday - and talk to someone in this totally dedicated, trained team. Sharing with someone at the other end of the phone who is dealing with people every day with all kinds of problems relating to arthritis in some way, may help you, even if only to unload and be listened to and they will most certainly do that and may well have some ideas for you both.

Life can be so unbearingly tough at times and my heart goes out to you both.

Gentle hugs to you and your son

Elna x

livinginhope

In truth,
I posted, because i need help!

I have a basic knowledge of how Azathioprine works, My 11 year old Daughter has been on it for a number of years, but for severe eczema.
Not for Arthritis
And I think that because she has an "autoimmune issue" The rheumatologist is saying my son has a "connective tissue disease"

Whilst examining him the Rheumatologist commented on his mottled skin, (he looks as if he has a wide net of purple viens on his arms and legs) medical term used with registrar was Livedo Reticularis.
She also queried Lupus several times (TBH I had never heard of it) and osteoarthritis, I rang my Mum whilst the Drs were beside us and asked her if there was any family history of these, and she told me NO.

My son has been complaining of sore hands, feet, knees and chest for months, we were first refered to rheumatology in September, (after a whole hoo ha of going into the out of hours Dr because his fingers had swollen so much i thought he had broken them, he diagnoised him straight away, i then had to go to my own GP to refer him to the hospital) got appointment through for November, and they said no he doesnt have arthritis, but gave me a number if he ever displayed the sewlling symptoms again..... 4 weeks later and I rang the hospital, who arranged the emergency appointment the following week......

The first Dr who my son had seen (the out of hours Dr) had been right, he does have arthritis.

Sparkys6887

Oh my Livinginhope. What you are dealing with is to much for one person to bear on their own. Have you thought about contacting your local careers centre for emotional support? Many offer Counselling. In regard to your son I guess he is frightened. It might help him understand what is going on for him if you name the feeling?? Only you know what's best. Though I do hope you both get more practice support and emotional support too. One past thought could it be that the tumours are benign?? You'll both be in my thoughts.

kellerman

Both you and your son are going through a horrible time and your son is bound to think "why me" Elna has given you good advice about ringing the helplines and maybe the doc's surgery can suggest someone your son could talk to.Neither of you should look on the negative side and think of the the C word. For such a young man he has a lot to deal with.
I'm sorry I can't be of much help. I can only hope that things get a little easier for you both. May

frogmorton

Hello livinginhope and welcome to our forum

I am not likely to be much help, but I really want to offer my support

However I am a Mum of three teenage girls, luckily I am the one with arthritis - not them. My 'Baby' is having her braces off very soon so you can tell him it is so worth it The last little bit is some 'gorilla' elastics from the teeth downwards so she can't open her mouth wide. I am terrified as she has epilepsy what could happen if she has a seizure.....so l understand how it feels to be a Mum with a poorly child.

I think in answer to one of your questions; I would to tell one of mine that whatever it is we will fight it and win the battle together, but at the same time there is nothing at all lost it getting some support for both of you emotionally.

Love and ((()))

Toni xxx
Toni xx

stickywicket

You have so much to deal with, livinginhope, and uncertainty is always the hardest part. That will remain until you get some answers and it sounds as if nothing will begin to happen on that front until Monday at the earliest. In the meantime we are here to support you but, unfortunately, can't provide those answers. You could try our helplines. I believe there might be someone around at the weekend but there is no guarantee. Samaritans do offer a 24 hr helpline.

I think, if there is an auto-immune disease in the family, children can inherit a tendency towards that or another one. It doesn't mean they will get any but they could.

I'm not quite sure, from what you've written, if your son did actually have his bloods done again. It sounds as if you are waiting on the secretary to report back to you. I hope you get some positive news on Monday but, if not, I think things need shaking up a bit here. Your GP sounds kindly but not at all pro-active. And it seems rather unhelpful of the consultant to speak of 'tumours' to a 13 yr old, before Christmas, and then leave everything hanging in the air until Jan 30th.

I think you need answers quickly, livinginhope, and, if neither consultant nor GP is fighting your cause, I suggest you contact your local PALS. They will, hopefully, listen and get things moving. Take care.

lululu

So sorry to hear of your plight livinginhope I do hope you get some results soon.

livinginhope

stickywicket wrote:

I'm not quite sure, from what you've written, if your son did actually have his bloods done again. It sounds as if you are waiting on the secretary to report back to you. I hope you get some positive news on Monday but, if not, I think things need shaking up a bit here. Your GP sounds kindly but not at all pro-active. And it seems rather unhelpful of the consultant to speak of 'tumours' to a 13 yr old, before Christmas, and then leave everything hanging in the air until Jan 30th.

I think you need answers quickly, livinginhope, and, if neither consultant nor GP is fighting your cause, I suggest you contact your local PALS. They will, hopefully, listen and get things moving. Take care.

No he hasnt got his bloods done again
The Drs PA was trying to sort it out, but she seems to have become ill herself
Ideally, I was hoping his bloods would have been done before his next appointment because, as I said before, some of them take 3 weeks to culture/test

The tumours, could be fluid filled space, they could be nothing, but no one has offered any explaination of them. I took a picture on my phone of the ultrasound scan, to show my OH, (He is a CPN, and stupidly :oops: I thought well he is in the medical profession, he should have an idea of what this is) but no, he hasn't a clue!!

I have dealt with much worse, on my own, and My son has a lot of reason to think "why me", and "bad things happen to me" (however that's a book in the making :roll: ) Our family's journey hasn't been an easy one, but I have never allowed the children to use previous incidents as any sort of excuse.

Colin1

My heart goes out to you both i am writing through tears as i read your post, its just not right that children should suffer he must be so scared and you so scared and worried. I have no words of wisdome but i wish i had a magic wand for you and your son. Love to you both from all of us.
Colin XXX

barbara12

Hello livinginhope and a warm welcome from me
Gosh my heart go out to you,to have to watch your children in pain is awful.
I do hope you get some answers very soon and the ones you want. what a brave little boy he is and such a brave mum.
Together you will some how get through this,and pleased dont forget we arent just hear for advice but to support one another, so if you want to talk more I for one am willing to listen.
I do wish your son well and please let us know how he gets on...sending you loads of love xxx

villier

Hi and a hello from me, I am so sorry to hear of all your heartache that you are going through, I'm afraid i can not advise you much as I have never been blessed with children(although got loads of lovely family) and got OA in my hands and a lot of other goings on, but I am an adult I can cope with the crap that's been flung at me, I feel for you so much trying to deal with everything that is happening and trying to be so strong for your wee one, we are all here to listen day or night, there is always someone around, keep us up informed as soon as you get any results back................bless you livinginhope my thoughts are with you and the wee one(also the rest of family), keeping fingers crossed things are not as bad as they seem................tc..................Marie xxx

nearlybionic

Hi
I am sorry to read your post, and to see all you and your son are dealing with . You said your son has Aspergers, and asthma, so I presume he is under a Paediatrician? And/or a CAMHS team too? Have you spoken to them about being told about tumours? They may be able to help both of you cope with dealing with this news, whatever the full diagnosis will be. I expect that the Paed`s or CAHMS team will know your son well, and will be able to support you both, in addition to the rheumatologist. Do they run a joint clinic (Paeds/Rheumy) ?
I hope that you can get some answers and further tests soon xx
PM me if you want to talk xx
NB

livinginhope

Hello All!
Still no answers, he is so sore!!
Wheat packs and paracetamol and antibiotics (for an ear infection)

School have been amazing!! TOTALLY amazing! He has access now to counselling, and he has told me that he is feeling some benefit from it!

Appointment on the 30th in Belfast, I hope the snow clears!!

Things at home have been hectic, I have 5 children!
A lot of things came to light in the 2 counselling sessions that he has had, he openly told me. My Best friend has stage 4 cancer, and she has just been told (today) that tumours are a lot worse that the first mri scan back in november.

As you can imagine we are devestated, for her, her husband and their two little boys.

My son heard MRI scan and Tumours at the appointment, and put 2+2 together and got 5... he has a tendancy to overthink things... bot revelant and irrevelant.

He came home from school this evening and asked me where his heart was, I said just a little to the left of your sternum... he said he was in a lot of pain there and it isnt muscular :-( I was going to take him into the out of hours Dr, but he said NO, they will just tell him, there is nothing wrong with him and send him home.

Mumof1

I'm so sorry that your son is going through this and I hope that you get some good results soon xx

stickywicket

Poor lad! Is he generally anxious about his health? Most kids I know wouldn't even consider they might have heart problems - even the one who had a congenital heart problem :roll: I'm pretty sure that heart pain is experienced centrally, not where the heart is actually situated.

It's good that the school is being so helpful and the counselling proving useful. Only another week to go now.

wall1409

I really feel for you hun, its the uncertaintly and the unknown that cause all of this frustration. Its bad enough when its yourself going through this but to have to watch your baby go through it must be horrendous...All I can say is torture your GP and hospital I would untill they get their act together.


Take care hun , love and hugs to both of you

Wendy xx

livinginhope

Today is THE day!

Nervous, YES!! But moreso ME!
We have had a blip, DS had an Asthma attack on Monday in School, he went in yesterday, but they really do leave their mark on him! He is exhausted!

My Son has been complaining of various aches and pains, does a 13 year old get indigestion? He has said he gets some pains in his chest, a little to the left of his sternum.... he said it burns. Another wee note for the DR!
His fingers are still very swollen and Black, and his knee is swelling too!

Im off to get a shower.... its been a long night! My Best friend was admitted into hospital in the early hours, she has stage 4 cancer, and started IV chemo on Monday, she is due to get a PIICU line in this monday coming, but has been very sick, low temp, and tired, her head is so very sore. She is going for a brain scan this am! Yet had the time to text me to wish My son all the luck in the world!

I will update later xxx

stickywicket

I hope you have a very good appointment and get at least nearer to some answers.

I'm so sorry about your friend. This is tough for both of you.

Pain with a burning sensation behind the sternum is usually diagnosed as some form of indigestion but please mention it to the rheumatologist as it might have a bearing on what is prescribed.

Let's know how you get on.

kentishlady

Hi. Do hope the appointment today goes well and will be thinking of you and your Son. My heart goes out to you all. Do take care. ((())) Beryl.

dreamdaisy

I too hope that you have had a positive appointment, please let us know how you both got on. DD

livinginhope

:x Furious :x

We went up for our appointment....

Wrong Patient file..... someone has the same name as my son, and it was his file that the Drs had!!

SO

Consultant comes along and says, ach Brendan long time no see...... I sort of raised my eyebrows, and she said so how have you been? so my son starts explaining whats been going on, and she said remind me what the problem is......
I butted in and said, you saw Brendan 6 weeks ago, you diagnoised him with Arthritis, Dyctalitis and connective tissue disease... we are here for an MRI scan

She said all his bloods were fine (even tho the secretary told me he needed them redone) and started to scan his hands with an ultrasound scanner.....

IT GETS WORSE.....

She then said he needs an MRI I will organise that, i said ok.... then I asked her what the diagnoises was now.... can i give him anything other than paracetamol for pain relief... his fingers and hands are still very swollen....
she said i could give him steroids, but i dont know what is wrong with him..... I repeated again, that the letter she sent to our GP said he had arthritis, dyctalitis and connective tissue disease, she then said the fluid isnt in his joints its ontop of his joints but yes the swelling and discolouration is visable, she said we will write out to you with a date for an mri, and left!!!!!

Currently, I am writing a letter of complaint against her, I am FURIOUS

She didnt have his notes, she treated him as if he was a nobody.... she didnt care!
My Son is sore, he cant open a bottle of juice, if he knocks his hand he has tears in his eyes! He has trouble dressing... he cant brush his teeth for at least an hour after he gets up!!

I am just so very cross!!

livinginhope

My Friend, however, is on the mend!
She has an infection, but is on iv antibiotics, and her temp has come up!
I will be collecting her from hospital tomorrow!!
The hospital sent her for a Brain scan, and lumber test, and have ruled out menengitis thankfully!
Atm, she will still be getting her PICCU line in on Monday, and hopefully the chemo will continue!
Such a stressful day!

stickywicket

This sounds quite confusiong and distressing. Did you ask about the tumours which had so upset him previously? Is it you or she (Sorry, I'm not sure) who doesn't want steroids? Perhaps your kind GP would, in a few days, be able to explain things once he has the report. Did you know you can ask for a report of all consultations?

bubbadog

What a mess!! No wonder your fuming! Definatly get the letter of complaint in for that Dr, she should of called for the correct file to be rushed down, why couldn't she get your sons notes up on the computer? They have been uploading patients notes from a certain year on to computer onwards. I hope the MRI appt comes quick for your son, and I agree get an appt to see your normal G.P and see if she can prescribe some sort of pain relief for your son so he doesn't have to suffer so much. Hope it all gets sorted soon.