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What questions do i need to ask Paediatrition? - possible hemiplegia.

(6 Posts)
fnm Wed 10-Jun-09 13:19:29

I have posted on here a few time re my DS as he has mild spasticity in his right arm.
We are due to see the paediatrition on friday (a long overdue appointment)as we have been waiting a while and from some good advice from other mumsnetters, i have been doing a lot of research, and it all points to hemiplegia.

DS is now 17 months old, and has been walking for about 4 wks now, originally it just seemed to be his arm, held it in a tight fist, mostly doesnt use it and when he does try it quite weak as if hes not much control. He crawled at 11 months but lead with his left leg and seemed to drag his right (never put the right into a kneeling position)and he still crawls like this.
Now he is walking something isnt right, not quite sure what though, sometime his foot looks a bit like his hand, toes clenched and slightly to the side.
I have looked at videos and all sorts of info on the net and cant think of anything else it would be but hemiplegia.

Anyhow the as i say the appointment is on friday, i feel, scared, sick, just dont know what to expect, its one thing looking up but it will all seem more real when he has been seen if that makes sense.

What advice can you give me, what should i expect? will they diagnose him then if it is clear to them? an what questions from your past experiance should i ask. i want use this oppertunaty well, i dont want to get home and think of a millon things i should have asked.

Thanks for reading. smile

TotalChaos Wed 10-Jun-09 18:46:34

Hi, I've only got experience of language delay, not hemiplegia so can only answer very generally, but didn't want this to go unanswered!

The paed is likely to ask lots and lots of questions about pg/birth/development since birth, and when milestones were all achieved. I imagine as well the paed will want to see how your boy moves his arms and legs. I don't know whether they are likely to dx at this stage or want to wait and see.

From your point of view; I would ask about what sort of therapies/referrals would be appropriate - e.g. physiotherapy, say maybe OT (occupational therapy), the paed will have general ideas but I imagine other professionals will have specific ideas about exercises to do with your DS, any special equipment to help your DS, whether any sort of supportive footwear etc may be useful. And of course the big question you will have is what the prognosis will be, what the future will hold. It's possible that the paed may not be able to say much about that at this stage though.

TotalChaos Wed 10-Jun-09 18:47:16

oh also I imagine you will be discussing with the paed whether any tests/scan/blood tests/further investigations will be required/

fnm Wed 10-Jun-09 20:39:04

Thanks for replying total chaos, all that info is helpful.
Think i will write a list to take with me so i can be sure i dont miss anything out.
thanks again.

Hangingbellyofbabylon Thu 11-Jun-09 10:08:02

Hello, sorry I'm a bit late in on this. I'm pleased that you've finally got your appointment through. I would ask to be referred for physio and occupational therapy as soon as possible, there can be waiting lists. Also to ask if an orthotic assessment would be useful, it might be that your ds would benefit from some special insoles or boots. With my dd they checked her hips and referred her for an x-ray, does your ds sit in the 'w' position? (kneeling but legs splayed rather than underneath bottom) - it can lead to hip dsysplasia so an x-ray can be useful. Has he had an MRI already? not everyone wants to but it can be very useful to pinpoint the areas of the brain that might be effected. You might find that they talk in vague terms about a 'weakness' or 'condition' but are not keen to actually give it a name, ask if they can give you an official diagnosis, if only for your own sanity. Is there anything you need at home? things like more supportive seating or highchair etc?

I guess the one thing they don't like to do is give you an idea of what the future may hold, but it sounds as if your ds is doing really really well with his walking already.

Whatever happens allow yourself a bit of time to digest it all and be kind to yourself, your ds will not change but you are allowed to weep and wail if you feel like it. I do hope you get some answers and rremember that we're here for you whatever the outcome. smile

fnm Thu 11-Jun-09 13:31:20

Hi HBOB, thanks for replying.
Tomorrow is our 1st assesment since i last spoke to you, yes, he is doing really well with his walking (albeit has had lots of bumps along the way, always on his weak side sad) and his arm doesnt seem as stiff as it used to be, he is trying to use it sometimes but its very week.
He hasnt had an MRI yet, if it is hemi will they automatically ask if we want one or is it best to request ourselves, part of me doesnt want it but if it helps to find out the damage id thinks it best.

Thank you so much for the other tips, i will be writing them down to take with me, and thank you for the support.
I am so thankful for mumsnet, had i not found it think id have been in for the shock of my life tomorrow.

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