Scared. Waiting for test results.

[ditziness]

DS is a very wobbly walker, as if he is drunk, has a couple of bad falls each day, and numerous others. He's nearly nearly 4, he's amazing but I'm starting to realise as he's getting older that he has a disability and isn't going to steady up.

He's been having tests done since he was 2, MRIs, blood tests all sorts. So far no answers. Now he's having genetic testing for Ataxia, and I've scared myself silly reading about ataxia telangiectasia He has all the symptoms for his age. I'm so worried. Reading other families stories just make me gasp with familiarity.

Hold my hand please

Consider it held. Must be very frightening for you but you know it is ultimately better to know your devil than fear the unknown. Perfectly reasonable to mourn the fantasy 'normal' child that never really existed too. We all love our kids but it's not bloody fair, any of it.

I'm so sad and scared for him, and angry and sad. ans sad for us all, for his baby sister, for me and what it might mean to my life, relationships. I feeel really sick infact.

Holding hand x

Another one holding your hand. When are you likely to get the results? Is there anything else that could explain the symptoms - glue ear, low muscle tone?

Do you know though, all this crying while you're waiting will probably help come the results day. You might find that since you've exhausted most emotions and you'll handle it all better than you think.

sending you lots of hugs and hand holding ditziness. I can understand that sick feeling , ds2 recently had tests for something horrid and i had googled to find he fit the bill entirely . it turned out not to be what i had feared , i hope things turn out better than you think too x

the only diagnosis he has so far is unexplained hypotonia.

I rang up today to ask for the results and they said they'd get back to me.

I have wondered and asked about his ears, but it's always dismissed.

Thanks everyone. I so hope it isn't ataxia

Why have they dismissed glue ear? it is so so common in kids and is part of the cause of my ds falling over all the time (as well as his developmental delay/dyspraxia!!)

Remember that even if it is Ataxia that there are degrees of all illnesses (clutches at straws). It is crap that instead of enjoying your little man you are worried sick about him.

Whatever happens there are lots of people here with wise words and experience to help you through it.

I'm not sure why they've dismissed or, but every time I've asked they've just said no his ears are fine. If these results are clear then I'll ask again

I know he's such an amazing boy. I feel terribly guilty that instead of enjoying him I'm either fretting about him, getting frustrated at him or annoyed at him ( got a six month old baby too, so life's stressful)

Audiology referral is done first here before other assessments. Unless someone has stuck the right gadget in his ear they don't know. My DS has had no symptoms of glue ear but apparently had it, it's only just been confirmed that it's gone.

Phew!! Thanks for hand holding!!! Negative results thank fuck!!!!

So very happy to hear that Ditziness.

Great news!

Go back to GP and ask for a referral to ENT for a glue ear assessment - it is cheap to do so not all a big ask of your local hospital and easy for your son.

Glue ear is horrid. My DD has it and it only just got picked up, even though she's been in speech therapy for nine months. She generally has awesome balance, but goes through days where she just falls over, falls off things and generally falls about.

Glad your results were clear

My dd is a wobbly walker and has hypotonia as a result of HIE at birth. Her fine motor co- ordination is also affected.

It's a worry when they fall a lot - we've done a lot of work on strengthening muscles and balance and things are getting better with dd slowly. Do you have physio for your DS?