anyone got any experience with language delay and epilepsy and or hypotonia? And hello.

[michtenstein]

Hi I am newish on here, have been lurking for a bit but havent contributed much and nor have I said hello.

I have a 2 7 month old dd who has hypotonia and epilepsy for which she has been on meds for a year now. We have had weekly Physio for a year and this has made a huge differrence to her. Her speech is an issue though. I dont know how much of an isssue, but it really gets to me sometimes, like today, when she said but but but for about and hour before I realised she wanted a peanut butter sandwich to eat. And I feel really sad that she cant just say that. More to the point I want to know if I should just be patient and it will all come or whether we should be doing more to help her.

We did some speech therapy last year till he was happy with her progress. We are supposed to go back for a reassessment now, and she is supposed to be putting 2 words together but she is not.

Well occasionally she does, 'arm sore' and 'dont that again' but mostly she uses single words. and not always. sometimes when she wants something she will just come to me and mae sounds and fuss until I sugest something like milk then say milk and walk to the kitchen 'come'. Other times she will just fuss and I wont know what the problem is for ages, hours. She can say her sisters name but not her own properly (they sound similar ) and she cant answer if someone asks her her name just smiles. Which she does a lot of and wins everyones heart.

I wonder sometimes if it is just a speech delay (because she has been late with all other physical stuff) or if the low tone complicates it which of course it does, but then how much does epilepsy mess with the speech development. I have asked about it but no one seems to know really or I guess they are waiting to see.

sorry this is so long. Has any one any experience of kids with epilepsy and their speech dev. I would love to hear about it. thanks

Then maybe don't - they are kind of a bit depressing and I'm not sure that I desperately wanted to know our boy was behind in most respects!

That said, I guess they are important to check that your child does understand things and to work out which areas of their development to concentrate on. I think lots of kids don't follow instructions, but maybe your daughter can point at pictures in a book. Our boy could only start doing this quite well recently, but before that we took out a photo album one time and he knew who everyone was - even the most random people. I guess all kids focus on what interests them and it may well be that what interests your DS is outside the scope of what the tests focus on. So you get a low result and feel all depressed, when really they could be fine.

For me, we ended up focusing after the tests on DS' mobility and also doing lots of puzzles and shape sorters. Not that he's very interested in them - he's mastered the round shape, then gives himself a round of applause and then is pretty much done. Every time.

The tests were also useful as they meant that we could then use health insurance for his physio (and hopefully for speech therapy). Also, I think it's good to have something to measure against in the future, so you can check that even if the development is behind, that it is progressing in all areas.

So - on balance - I'd probably go for it...

Good luck with whatever you chose to do.

by the way my nephew had grommets and another kid I know and they both had amazing success and started talking soon afterwards, though they were delayed before. So hopefully you'll get same success...

Thanks HayleyK. How old's your DS, BYW?
DD does know what a book is, which is a start, and I've seen her use a finger to explore the different textures in her copy of 'That's Not My Kitten'. We are making her a book with pictures of her favourite people and everyday objects in it, and hoping she can use it to communicate in future.
I'm really hoping the grommets will be good for DD and make a difference as I keep hearing all these really positive stories and know two kids myself who didn't speak at all until after the grommets were fitted.

BTW, not BYW!

Arabica,that is a terrific idea.
Have you thought about PECS?
It can be used from an early age.

My boy is just over 19 months - born beginning of August 06, so very close in age to your DD (am getting the hang of these acronyms!)

What did you make of the Makaton signing - I'm worried to start something like that, in case we then take focus away from the speaking. Did you worry about this at all? At the moment, I guess for your DD also, I imagine it's too early for them to tell whether there is an actual problem with the speech and if so how significant it is or is likely to be. Am making that up though, as I haven't really spoken to anyone yet about it, which is why I want to take him to the SALT....

Hayley, your SALT will tell you Makaton is used in addition to speech, so it won't detract from developing verbal skills. We are using some very basic signs: hello; yes; drink; eat; more; finished; thanks; and baby (because we are encouraging DD to play with a baby doll to help her learn about dressing, feeding, etc) When DD is in the mood she can sign 'hello' but she hasn't tried any of the others. Even so, I try and remember to use them all the time. Even if DH doesn't.

Hi Moondog, I think that's why portage suggested the book of familiar objects--so we can start trying to do PECS.

Yes Hayley,signing witll support and facilitate your child's use of language.Tonnes of research to show it helps not hinders so don't worry about that.

You need to ensure that your SALT knows enough about Makaton and signing systems (not all do unfortunately(. If you want to invest in something, I would recommend booking yourself onto a parents' two day course. Extremely worthwhile and will be of more use to you than practically anything else.

Have a look at the Makaton website Give them a ring or even join the users' forum.]]

(That is brill Arabica that your Portage worker is plannig ahead. )