Waiting, wondering and confused...

[Rustysaddle]

It all started last year over Easter, my daughter J had pains in her hips. The doc said she had pockets of fluid on them (can't remember the technical term) and she was too young for an injection. So she got referred to a Physio, which was as useful as a chocolate fireguard. Then her knees started hurting, physio had melted by then... Bearing in mind that J is only 11 and Autistic explaining her pain was a complex process. Feeling sick all the time, no energy, not eating much. She had a xray which showed spina bifida occulta, apparently nothing to worry about...

Then in July the ends of her fingers swelled up and went red, ooohh, visual evidence, down the doctors again and referred to Rheumatology, a shame a 7 month wait. During this 'wait' (urgh!), her pain got worse, she couldn't have ibuprofen because she had a kidney problem. She couldn't communicate to her teachers about her pain, got told off for not wanting to do certain tasks like sewing. (urgh!). So home schooled her, poor babe.

Finally we see Acute Physio and get told we're definately in the right place, you'll get all the help now etc etc. At this point both her legs would not straighten.

So we have the Rheumatology appt in Jan and we wonder how he's going to fix her fingers. Shock and horror she has to have her knees injected. To bring this up in a consultation when a child is autistic, means causing a total meltdown and oh yes, she did. Could have told me privately, and I could have prepared her for it.

So she goes under for the injection, thinking she'll never be able to walk again, because a nurse said she may have trouble walking for a bit. A bit to an autistic child could means years. She took 2 weeks to get over the shock of the whole thing, and her pain was huge. Her eyes hurt, her chest hurt, her arms hurt (doesn't help when they put the capanula in her poorly elbow) urgh! They said back of hand....

We had follow up with them and a diagnosis of Growing Pains.

She's still in pain, her fingers are swollen, she feels sick all the time, she looks anorexic, she's off school with depression.

Who wouldn't be after a year of pain because she's growing.

So start at the top as we are in the same position as we were last Easter but worse pain and more joints.

Got a private appt next week! GP had a talking too as well, he actually managed to get me in before the private appt. Not holding my breath for any diagnosis though....after all it's just growing pains...

Not to mention the genetic consultant waiting to see if she has, she's investigating Marfans Syndrome, maybe all that will be put down to growing pains as well.

In despair, thanks for letting me get it all off my chest. Off to get some more Calpol.

Urgh xx

[laney84]

poor you and your daughter,

jesus- i hope the medical professionals really step up here, as you hear so many horror storys about them fobbing it off as 'growing pains'. i really hope this private guy pins down a diagnosis so you can start on the road of the right medication. the poor little girl.

big hugs and thinking of you all x.

[allanah]

Nightmare, its horrid when your kids are sick, I hope they get to the bottom of it on Friday for you and get some investigations and treatment started. Good luck and glad you can come on here and get it off your chest. Thinking of you

Axx

[sylvi]

You can always go off on one here we don't mind. You are having a hard time of it with your daughter autism on top of everything else,you don't need to fobbed off like you are being. Stand your ground and give them a good telling too.

Wishing you a happy outcome.

Sylvi.xx

[Hidden]

I don't think many people have a clue about how to approach those with autistic spectrum disorders and that includes people in the medical profession. I replied to your question but just to say lots of support and hugs from me too - as the parent of a child with an ASD and as someone recently diagnosed with RA - the pairing of the two must be a nightmare for you and for your poor daughter of course. I feel very similarly about having a diagnosis of RA to the way I felt 12 years ago when my son was diagnosed with Aspergers. Take care and good luck. TTx

[Hidden]

In this day and age, with all the scientific advances, it is unbelievable that an educated doctor could call swollen red fingers as "growing pains" !

Please don't let them get away with that!!! You can tell them I said so. That just infuriates me, and that is using nicer language than what really comes to mind.

Thoughts and prayers are with you and your daughter. Loret xx

[Judi]

Poor little mite. So young and putting up with so much, bless her.

As a child she shouldn't need to wait for appointments, she should be seen ASAP by all concerned. She needs to be treated as a priority.

My thoughts are that you need someone fighting in your corner in getting her the urgent treatment she needs, perhaps someone on here can suggest an organisation or something. I do hope so.

Meanwhile, take care.

Judi xxxx

[Hidden]

Might the National Autistic Society be able to help you access specialist help quicker perhaps? They might have more clout and also be able to find a rheumatologist who has an understanding of autistic spectrum disorders than most for you and fast track your daughter that way. Because she has communication problems she might be unable to describe the symptoms adequately so it's important that the medical profession understand this and prioritise her. TTx