My twins will never walk

[Twinmumof2]

Hello,

I'm feeling a bit needy. I have had it confirmed in writing what I have suspected for a long time that my boys Daniel and Thomas will never learn to walk. They can't stand up even with support. We are off the GOSH in 2 weeks. I am terrified about the future - Daniel is 2 stone, we can't keep carrying them for ever. I am so worried for them.

thanks

Vicky

[madwomanintheattic]

what's their dx, twinmum? how old are they now?

[Twinmumof2]

They are 2 - no diagnosis yet - had physio, OT, neurology

[madwomanintheattic]

did they say 'they will not walk' or 'unlikely to walk'? or what are they basing the prediction on?

were they prem?

fwiw we were told dd2 would be unlikely to walk or talk, and she does both. and skis, runs, and goes to ballet class. (she has cp)

that said, mobility isn't the be-all and end-all, it seems like it is, early on, but most parents who do have children with mobility issues realise that it doesn't have to affect independence etc. it's still a shock and a huge loss, but that particular blow does soften over time.

normally they don;t make predictions until 4 or 5 about the possibilty of walking - do you know what has prompted them to be so specific at this point?

are they sitting at all?

or is it more bone fragility etc? (sorry - not much info in your post as to specific difficulties)

[MedusaIsHavingABadHairDay]

Hmm. Never is a very strong word..
I'm not a neurologist but I have worked with severely disabled children for many years and one thing I can say is that children can..and often do.. surpass predictions!

One of my class has taken her first steps this year.. she is 13. My son's best friend is 12..he also took his first steps this term..one has a diagnosis that means she shouldn't be able to do ANYTHING..walk, talk, comprehend.. but she has a little speech and a lot of determination. I have seen enough children come sooo much further than predicted to say be positive; and take each day at a time without trying to peer into the future. Trying to mentally face an unknown future is impossible and a waste of emotional and mental resources... whatever the future brings you can deal with it when it arrives.

In the meantime use the gloomy predictions to get the support you need NOW as these things take time.. get OT, SS etc to think about adaptations which you need now..and don't take no for an answer (our downstairs shower room has made life soooooooo much easier, but it took 2 years to get okayed)

My own son was predicted to have a pretty grim future.. would he walk, would he talk.. and he does both now:)

Most of all.. hang in there. Your boys will show you the way, whether they do it with their legs or some snazzy wheels......:)

[Dawndonna]

As with Madwoman, we were told that twin 1 would never walk or talk. She was under GOSH for years. She does both. The walking is limited, but she can. As for talking, well, she's in top stream for everything, taking her maths GCSE a year early, and whilst she tires and sometimes slurs her words, she's perfectly understandable. In fact if she's not tired, you have to listen to pick up where her problems are.

[chrchrch]

I've seen an acquaintance recover mobility and other neuro-functions following a series of strokes, after Queen's Square had done their best. He went for ayurvdeic therapy in India, stayed at what sounds like an idyllic seaside clinic. Do PM me if you'd like me to ask where this was.

Have also searched for avuyveda and cerebral palsy type conditions, there seem to be some success stories there. As there are from other posters here. All good wishes.

[StillinMyPJs]

Hi Twinmum
Just wanted to say hello. It's horrible when you see something like that in writing. I remember having a major wobble and crying on and off for days when I saw the words 'globally delayed' in regards to my son on a referral letter. I am really surprised that you have been told that your twins will never walk when they do not have a diagnosis yet.

Medusa's idea to use the gloomy predictions to your advantage is a great one.

My ds started to stand (and I use this term loosely, 'weight bearing draped over a chair' would describe it better) at 23 months. He has had some excellent progress since then and now at 2y10m he is walking with a walking frame or holding onto my fingers. Even 4 months ago when we were setting ds's physio goals with his physiotherapist I mentioned that I wanted walking to be one of them and I could tell that she was thinking

Ds surprises me and his therapists frequently with what he can achieve. I hope that your boys can prove these predictions wrong.

[starfishmummy]

Another nowhere who was told child would never be able to sit up let alone walk. Ok he was 8 before he walked unaided but he can.
Also we were told he would be blind and deaf.......
Sure, he has many problems but he has a lot of determination too!

[Twinmumof2]

It's kind of cruel really, the doctor wrote the letter out of kindness because social services would only help if we could prove that the boys had a life-long disability. In order to get help we have to give up hope.

[mariamagdalena]

Aha, a for-the-benefit-of-the-audience very poor prognosis. Since that letter isn't really aimed at you, I would file a copy, forward it and then forget it. Once you have portage, physio and social services set up, you won't need that letter again till the boys are 3 and you apply for dla higher rate mobility.

if the specialist keeps repeating dire words like never when writing to your GP, then ask whether he means a 0.1% or a 10% chance of walking eventually. Cos a prognosis really is just a guess, based on the facts known so far combined with a knowledge of how other apparently similar situations turned out.

[madwomanintheattic]

oh right.

well, if it was a convenient statement so that you could access support through ss, fair enough.

it doesn't make it any truer, though. you don't know what they are going to be able to do until they do it. and neither does the doc.

good luck with ss.

[4madboys]

hi twinmum i dont have any experience with special needs, but i do have a friend who was told the same as you but about her daughter. anyway she does special physio, a programe called 'footsteps' i mentioned your post and she said she would be happy to chat to you and pass on the details if you like?


she was also told her daughter would never walk (the drs actually thought she would die) but she is beating the odds brilliantly!

i will pm you ok? xx

[BakeliteBelle]

Another one here who was told that DS wouldn't walk, talk, see etc. He does all these, but he's still a real handful. Perhaps you should ask the doctor for a bit more evidence? They don't know how devastating this kind of news can be. I always admire the medic who weighs up all the facts, and says 'I don't know, but I'll ask a man/woman who does'.

[madwomanintheattic]

bakelite - i don't think she wants evidence - the written forecast for not walking was by their request so that they could ask for support from ss. so whether the boys will walk or not isn't known really. it's just a worst case scenario to try and get ss involvement for the family.

it's really sad that familys have to go through this just to get support.

good luck op. hopefully your boys will be up and about in the future, and if not, i'm sure they will many other talents to astound you with. x

and i hope you get the support you want from ss.

[madwomanintheattic]

can i also just say - why do you think you have to give up hope?

just because something is written down does not make it true.

dd2 was dx spastic quad cp and we were told she wouldn't walk or talk. dr google also informed us that people with spastic quad cp don't ever walk.

i still forced her through her thrice daily physio. you just never know, and i was adamant i was going to give her the best possible chance.

what can they do now? where is their development at the moment? any head control? do they sit with/ without support? do they have standing frames? (i assume they aren't any where near rollators or walking frames yet)

do they have any useful grasp? any intentional movement?

[sevensevenseven]

Also curious as to what stage they're at now. Without a diagnosis just because they 'should' be walking by now doesn't necessarily mean they never will. Have any tests been done to rule anything out yet or is that what the appointment at GOSH is for? Do they see a physiotherapist? If not I'd highly recommend trying to get a referral for them to be seen by your community children's physio, ours has been fantastic and I'm sure has made a huge difference.

FWIW my DS has duchenne muscular dystrophy and was behind with all of his milestones. He sat at 8 months but was over a year old before we could stop putting cushions behind him for when he fell backwards. He crawled at 15 months and took his first unaided steps on his 2nd birthday.