Does any of this ring a bell with anyone here?

[MommyUpNorth]

Hello again. I posted on this part of MN a while ago when my DS was having some trouble seeing & hearing and was just starting to undergo testing. Well, 6(ish) months, and lots of specialists later I've received by post a summary of what's going on with him... I know I was so keen to get something from all these various people, but when it's all written down it doesn't at all seem what I was hoping for. It now looks as he's not just behind, but perhaps more.

DVM - vision now much improved. He's 7 months old and has just passed a 3 month old eye exam which we are thrilled about! They said they'll do his 6 month review nearer to when he's one.

Developmental delay - encouraging progress recently. The progress seems to be in his vision and noise making in that he's doing more of it and actually engaging in more of a 2 way 'conversation'

Jerks/startle episodes continue but less frequent - normal EEG Dyskinetic/dystonic movements FTT but recent weight gain since starting Infatrini This is even stalling now and he's gone back to a straight line on his chart just above the 0.4 centile.

OFC fallen from 75th to 0.4th centile at 20 weeks but parallel since Reduced hearing left side - awaiting futher assesment

He's seen loads of people now and everyone is encouraging and keen to get to the bottom of what's going on... but everytime they give me more info there seems to be a little less 'hope' that it will all just go away. His MRI results showed a delayed myelination but no other significant abnormality and I still don't fully understand everything.

His most recent addition to our team is a paed physiotherapist who came last week to give us exercises to do everyday. He doesn't roll or reach or try to sit, so it's an awful lot of work! She's ordered him a corner chair and said she'll explain how to use it when she arrives, and then went on to talk about weight bearing exercises which they'll start soon so that his bones continue to grow properly...

I don't know what I'm really asking here, but it feels good to write it all out to 'someone'. Does anyone have a child with similar 'symptoms'?

And I suppose just a hello from me and a little about me. I live with a very supportive DH, and we have 3 other children - a DD and 2 DS.

Message withdrawn

also no idea I'm afraid - are you getting support in other ways too (sounds like the medical side is taken care of)?

Have you got Portage sorted out? DLA?

Shout if you need help with that kind of stuff.

Thanks for the messages. My lovely HV has just been signed off sick for an unknown length of time, so I'm not really sure who to turn to now. The new HV hasn't even met me yet but on the phone she wasn't very pleasant.

Other than that no real support besides DH. Family is miles away and I doubt there are very many groups up here to go to as we're quite rural.

I have no idea what portage or dla is, so I don't think they're sorted out yet. Is that something that someone should tell me about at one of these appointments?

well, a HV should have told you but if you haven't really got one at the moment....

Portage is an early intervention educational programme done in your home and with you and your ds - a Portage worker comes out once a week for an hour and does play activities with your ds (this can be really basic stuff - when dd2 was tiny we spent ages working on rolling over for instance). It's provided by the local education authority and is free - your HV (when you eventually meet her) should give you a contact number and/or refer you - you can also refer yourself. I always found this so helpful when dd2 was little.

DLA is Disability Living Allowance - a non-means-tested benefit you can get if you have a disabled child. It involves filling a gruelling application form, but there is plenty of help available when it comes to doing that, and as it's quite a lot of money it is well worth putting yourself through the initial faff.

Hope that's enough to get you started - whereabouts do you live?

Thanks geekgirl. I've had a look at the Portage site, but it seems to be only in England. I will ask my HV tomorrow if there is an equivalent up here.

Will have a look at the DLA stuff a bit later today. The thing is though that we don't really know what is wrong with him, so I'm not sure that we're ready to apply if you see what I mean?

We're on the northern coast of Scotland. I felt fairly isolated before, but even more now with ds.