Benign Congenital Hypotonia

[HayleyK]

Hi,

I'm looking to meet up with anyone based in London who has been given a diagnosis of benign congenital hyptonia for their child - but not attached to a specific disease that they know of. My little boy (2) has BCH and hypermobile joints which have caused delayed motor skills and speech and I'm finding it difficult to know what the best action is to take. Also, I'd love to share advice from speech therapists etc. and maybe see if there's one or two children of a similar age locally going through this that we could get together with to do the speech therapy exercises etc. - thought it might make it a bit more fun, rather than doing the exercises on my own with my boy all the time.

We're in Swiss Cottage, but I'm happy to travel if there aren't people locally!

Thanks very much,
Hayley

Hi, Sadly not from London but down South. My daughter was diagnosed with Congenital benign hypotonia at six months, and is now 7 and doing absolutely brilliantly !! It's a difficult diagnosis because each case is so varied . Just thought if you would like to ask me anything please feel free

2 of my 3 children have CBH, eldest was dx at 9 months, youngest dx at 5 months. (He was still as floppy as a newborn). They both also have a dx of Hypermobility Syndrome. I would advise getting a wobble board, it really helps, and ask for a referral to OT. My 10 yr old still has issues, at 9 she started to get fluid building up in her knee joints, which has to be syringed out. Beanbag throwing games, balancing on walls (walking along them). Swimming, and lots of it, as it takes the weight off their joints. I'm in the South-East, not London though. Hope you find something that helps your son.

Hi, DD is also 2 and has mild hypotonia and hyperflexibility. She is mobile though. It's not BCH--she has various other issues too. I'm about an hr away from Swiss Cottage by public transport.