Any experiences with Snowdrop?

[bakingtins]

My Dd 9 months was recently diagnosed with infantile spasms, a form of epilepsy that can be catastrophic for brain development. She's been in and out of hospital over the last five weeks, but we are starting to look forward and try to find out how best to help her.
We will be accessing whatever the NHS offer us in terms of early intervention but I'm aware funding is not good for this. I think she is delayed to the level of a 6-7m old at the moment.
Does anyone have any experience with the Snowdrop charity in Devon? They offer neuro developmental assessments and individual programmes to do at home.
Other recommendations also gratefully received.

Yes we have. They are very friendly people and extremely helpful but don't go looking for miracles. Their assessments are very good and in depth and I know of people travelling some distance for reassessments and to have their plans updated etc but personally I think a lot of their things are based on repetition and the elasticity of the young brain and being able to remould it. I'm on the fence a bit I guess. Very very nice people though and it has definitely helped a very goo friend of mines son

Thank you poot
What type of problem does your friend's son have?
We're a bit between a rock and a hard place as the treatment my daughter is on makes her immunosuppressed so whilst we want to be out and about stimulating her brain we're not able to go to any baby groups. I'm not a natural 'entertainer' and have always relied on going to music, baby sign, swimming etc to stimulate my DCs. A home programme would be helpful. The outlook for children with her condition really isn't good, I'm hoping she's at the milder end of the spectrum, but only time will tell. I don't want to look back and wish we got in there earlier or did more.

I actually have a few people I know who have tried it. One travels several hours to e reassessed every year her child has autism, another friend child has developmental delay.

A friends child has attended snowdrop for several years and found it very useful following a brain injury. Nothing is a miracle unfortunately, but the philosophy is sound.

I hope your baby is getting the right treatment, ie ACTH and vigabatrin plus one other drug (?steroid or another anti epileptic) as it's so important to get it right first time and control the abnormal brain activity.

She's on v high dose steroids which is first line treatment in the UK and controlled the spasms and hypsarrhythmia pretty quickly, but we've been unsuccessful weaning her off (one attempt) so we may need another maintenance med. She's also started on b6 which seems to be helping. It's v hard to tell at the moment what is steroid side effects as she feels crappy on them and what is the disease. I don't want to wait until it becomes obvious she's delayed way down the line if there is stuff I could be doing to help her recover now.

Thanks for positive feedback I think I'll get in touch with them.