Brainwave, Snowdrop or Footsteps

[sioba]

Hi,

I have a ten month old son who is delvelopmentally delayed, he has nerve conduction abnormalities, agenesis of the corpus collosum and hypotonia. He basically undiagnosed, the feeling is that there is a genetic underlying cause but despite extensive testing we don't know what the cause is. We are awaiting refferal to teh DDD study. He is however responding really well to physio, and to SALT (for feeding issues) and is about to start OT.

I would like to supplement his NHS therapy in some way but am really struggling to find private practitioners who I trust. We are exceptionally lucky with our NHS provision it would seem - in that they are all amazing - really listen to me and see us frequently. I am somewhat sceptical about alternative therapies- no problem with others using them but they are just not something that I personally believe in. I would like to see a good strong evidence base behind any therapy that I signed up for.

So does anyone have any experience good or bad of any of the following

1. Private practitioners (OT, Physio or qualified other) in South East London (well South London would work)
2. The Brainwave program
3. Snowdrop
4. Footsteps (I think he might be a bit too young for this)

Thanks a Million,
Sioba

Toy wise tootsandblanket is right it is very hit and miss. Just keep trying different things. the vtech (you will come to hate/love vtech!) first steps baby walker has lots of easy to access buttons and stuff with flashing lights etc is a good one, but be prepared to waste a lot of money. A cheap soft small football has been one of our best buys while expensive ones are never even opened. Lovely relatives but not much imagination when it comes to SN!

We sat DGS in a babeco baby station for 18 months (he was a titch) and he sat brilliantly in that, but your physio should suggest something appropriate.

Childrens Therapy we started seeing them 3 weeks ago for ds2(18months, CP) and they are absolutely brilliant.

Thanks everyone for your responses - apologies for the radio silence I've been offline for the bank holiday weekend. On the seating issue I discussed it with our physio she feels that as ds2 is so close to sitting unsupported that it would be counterproductive. He can sit but if he tries to reach for toys or use his hands he falls over. I tend to sit him between my legs a lot when I am playing with ds1 or as I said propped with cushions - it seems as if people here think it would be better for him to have a supportive seat? I used to put him in his bumbo but our physio doesn't seem super keen on them.

Toy ideas are great its not too long until his first birthday and given that he doesn't really handle objects a lot - I'm very unsure of what to get him. Let alone give all the various relatives ideas!

Sorry back again - on the therapies thing - all the SN blogs I read seem to suggest that everyone is doing therapy all day every day. This makes me feel like I am really failing my son. I work a 4 day week so he is with his nanny 4 days a week - she is fabulous and definitely works specifically with him on exercises (for want of a better word) set by his physio and OT twice a day - as I do on my day off and at the weekends. Is this anything like enough? He also goes to a physio and OT led playgroup once a week, to a singing group once or twice a week, sees his physio most weeks and his OT most weeks. We also obviously try to keep him stimulated as much as possible and interact/pkay with him all the time when we're not feeding him/ trying to get him to sleep. I hate feeling that I am letting him down already.

Very quick as I'm so tired and need TV! You are doing BRILLIANTLY with DS s physio programme. It sounds very rich and varied exactly what he needs. I think most everyone feels like you and we are never doing enough. Check out the cp support thread!! Re the seating. If he is nearly sitting on his own, I would carry on as you are. Maybe sitting with his back against the sofa to give a bit of a sitting prompt. I have used myself, still do, as a chair for 4 years as I can anticipate, guide and prompt good movement patterns. So I wouldn't bother with seating at this moment. Maybe he will need a corner seat in time but not just now. . Ps the bumbo to ably encourages sacral stating, ok in littlies but not good long term.

I'm afraid they are not based in conclusive evidence - no matter what they claim. Exeter University found this to be the case about Snowdrop. I went to brainwave and it was a rip off to be honest. I recommend getting an NHS physiotherapist and asking about long-term exercise. Basically, repetition of strengthening exercises with good positioning is what they will recommend. I don't mean to be negative, I'm just offering a different perspective that may save you a lot of money!

Funny to see this thread resurrected! In the end we did all three at various times and found them all helpful at the time we were doing them, probably Footsteps most of all for us.
DS2 is 6 now and is severely disabled (nom verbal, wheelchair user) but is an utter delight!

Lovely to hear xxx