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

dd has cerebral palsy and epilepsy and no speech at all. could be her cp, could be the epilepsy.

ds is 14 months old and has hypotonia. He doesn't yet babble or say any words, but they aren't sure what is causing this... the hypotonia or something else.

Sorry that isn't much help really. He is getting speech therapy though which started when he was about 12 months old and it's every other week for about an hour.

hmm maybe we just need to go back to speech for a while.

maybe encourage speech by giving choices milk or juice ham sandwich or peanut butter

my ds is 2.7 with speech delay up until 36 mths ago wasnt saying anything have been doing the choices and encouraging and although not talking in sentences he is beginning to communicate better

if he needs me have encouraged him to say help or mama then he will show me what he wants then i will say it he now says mama games

i felt like we werent getting anywhere but since i've been doing this he hasnt been as frustrated and i see him accomplish more each day

i also drew things on paper so he could point at what he wanted then i would say "oh you want a drink of juice etc

it is upsetting and i know exactly how you feel

just dont ask her to say things just encourage and praise and keep what you say simple i was told to say it as 3 words such as cup of juice eating your dinner etc

also i have jsut been told by SALT to verbalise everything i'm doing as for a child to speak they need to understand the actions

now if i put my ds trouser on i say one leg in two leg in now he says it when we get dressed it has worked and i'[ve seen big difference i hope some of this will help

sorry i cant be of more help but at same stage really as your dd good luck

sorry to go on when eating apple or banana or anyhting lovely green apple yellow banana etc

i know you probably do this but it struck me the other day how i just get on with things and how i could do bit more such as talk what i'm doing cooking dinner peeling potatoes orange carrot and i have now started doing this more and see a major responce from him

and to not jut give in to offer chioces and encourage them to speak orange or apple milk or water and it really does work too some lovely mn gave me the same advise and as i say big difference in my ds

Sorry, I can't help with the epilepsy, but I have a son with hypotonia who had what I suppose would be defined as speech delay. Basically, he was clearly intelligent and obviously had an understanding of what was said to him beyond his years, but he couldn't really put more than one or two letter sounds (let alone words) together until he was about 2 and a half (when some individual words became more clear). He was quite imaginative at letting us know what he wanted, though - eg "n, b, aja, l" (his words for green, blue, orange and yellow) always meant he wanted to go to the soft play area (which had a multicoloured slide in those colours, in that order...). The speech therapist felt that he didn't actually have a speech disorder, as he did have almost all the letter sounds, he just couldn't put them together for a while. It turns out she was right, as by the time he was 2 and 10 months, he was talking in understandable sentences and fairly rapidly became far more clear in his speech than most other children his age. I think the low tone had quite a bit to do with the delay, as he also used to eat incredibly slowly and did dribble a lot for over a year. The low tone just makes putting lots of sounds together for speech rather hard work - like talking through treacle.

Not that this helps you with the possibility that epilepsy is adding to the problems, or that it's not something else in addition, as hypotonia often comes with other symptoms that only become apparent over time. But at least it might help you know that at least one other child with hypotonia had pretty dire speech at your daughter's age, but overcame it just fine!

Thank you so much it really helps to hear from others who hav been through the same thing. bubblagirl I will try the options thing more, I did used to do it but have slacked off. and hels9 thats really encouraging, thank you, it gives me hope

i know i've gone on about this before but Makaton is a signing system designed specifically for people with speech delay. Basically you sign keywords as you speech. For more information watch 'Something special on CBeebies 9am weekdays and check out their website makaton

Yes i have tried to do signing with her from quite young but she just would not do it. Except for the more sign and milk sign which she would occasionally use to mean milk.

Well having said that I just offered her an oat biscuit that I had made yesterday. She wanted one of the butter cookies that were finished yesterday and then started asking for an oink. So I said 'oink' frantically thinking of what could possible sound like an oink. She kept saying oink and then added the sign for a pig, which I have NEVER, NEVER, seen her use. So I said 'pig' and she nodded pointing at the toasted sandwich maker that we have that is cow shaped and which says moo. She apparently wanted a toasted sandwich (for mid afternoon snack - but that is a different thread I think).

Is it normal for a 2.5 year old to mix animal names up and often say off instead of on? I thinkI am just paranoid...

Maybe all that signing wasnt wasted after all.

Hi, Do any of you have any recommendations for speech therapists in London that are good with problems due to hypotonia - my little boy is 19 months and I think we need to now go see a speech therapist. The physio sessions have been amazing, and he is improving rapidly, finally pulling himself up this week though pretty far from walking still.

Thanks very much for any recommendations!

Hayley - am not in London but just wanted to say hello, my DD has hypotonia too (17mos) and has also just started to pull up!

Hi,
I'm never sure what DD and D means - is DD daughter or son?

How did you find out that your child has hypotonia? We just got our boy diagnosed, I'd been taking him to the paediatrician saying I was worried that he couldn't do things like sit himself up, since he was about 11 months, but it took another 8 months from then.

How badly does your child have it and in what way is he/she affected? I'm have been told our boys case is mild, though I'm not sure whether he ultimately will then end up exactly the same as all the other kids, or whether he may experience difficulties or delays for a longer time. I guess there are no reassurances and usually it looks like hypotonia is linked to something else, whereas my dr doesn't think our boy's is (other than hypermobility).

Would love to hear from you!

Hi michetenstein, DD doesn't have epilepsy but she has hypotonia which was diagnosed as soon as she was born. She also has global developmental delay which means she isn't meeting any od her developmental milestones on time.

I'm just wondering if your child's speech delay could be caused by glue ear?

DD's speech & language delay is defintiely caused in part by having glue ear which is making her moderately deaf (45-50db, which means she doesn't hear normal speech without her hearing aid). Many (but not all) children with hypotonia have glue ear so it's worth having this checked out. DD's going to have the fluid drained and grommets inserted so we will be able to assess (a) if there is any underlying permanent deafness and eventually (b) whether this is the only reason why she doesn't speak.

HayleyK, hello--DD's probably just a bit older than your son, she was born July 06. Although she has hypotonia her gross motor skills are OK and she can walk, albeit not very confidently.

Your community paediatrician should be able to recommend a SALT (speech and language therapist)--haven't you been offered any sessions? In our London borough they all work from the same building. You may find OT useful too, and portage.

Oh and if you look at the top of this page, under 'useful stuff' you'll find an acronym list. HTH.

Hayley - we discovered my daughter had hypotonia because her head still lagged when pulled to sit when she was 1 and our GP was concerned, and also she was referred for a and face one way and they were concerned because she couldn't sit at ALL and just fell forward, so referred her for further assessment, we were lucky!

We have never been told if she is mild or not but I assume its quite mild as she can pull to standing quite well now. Her hypermobility is probably what is stopping her from walking now. It is a waiting game though!!

And its just her moving thats affected, she seems floppy and wobbly a bit and her ankles bend over. She has just started crawling properly and her top half seems much more stable now though. Her speech is actually not affected at all and quite advanced. Her eating is probably a bit behind, I do have to mash and puree things more than most parents I think!!!

We got our boy these special boots that the physio recommended which seem to help stabilise the ankles - I'll check tomorrow what the name of them are, in case you're interested. Seem to be pretty good at giving him a bit of support. I think the top half really strengthens once they start crawling. Let me know how you're getting on!

Mich,I am salt and specialise in SN.
Your child will only sign with you if you sign with her.
You need to persevere and do lots nad lot of it first of all.

This is not aimed specifically at kids with SN but is an excellent dvd to get you started and gasining in confidence.

Sing & Sign

They are Piedro boots..she was fitted for them yesterday but we were told that they will take 4 weeks to arrive, which is a shame as she would really benefit from them just now. But we are getting them free on prescription so I can't complain I suppose!

Hi mich.
my dd is now 5 and has hypotonia, mild hypermobility as well as previous speech delay- infact she was totally non verbal til age 3. However speech therapists were largely unconcerned as her comprehension was age appropriate. They did later concede that her hypotonia played a big part in the non verbal issue. Now her speech is awesome considering!
right I'm going to read rest of thread now!

oh yes dd had piedro boots. Really good. Dd was late to walk at 26 mths - also dd has terrible complex eyesight issues which most probably added to the delay. Dd has noonan syndrome albeit mildly. Basically she is petite but sweet smart and healthy!!!

Hi Piffle, a quick hijack to ask how the SALT could assess your DD's comprehension when she was non-verbal? We think DD can understand much more than she can communicate, ie she doesn't point to ask for what she wants but she knows how to go into my handbag and get my purse/remote, then give us a cheeky smile as if she knows it is naughty!

easy arabica
ask her to follow 2-3-4 step instruactions
take off your socks, put them in the laundry basket
get an orange cup out of that cupboard
which shape is red
make a tower of 3 blocks
she was pretty good.
So they said her understanding was assessed as well above average as she knew all her shapes colours numbers and letters without speaking.
so when she did start talking she had some sounds that were hard to make out but they came right as she self corrected from age 4.
She was reading at age 4 and at school has just been identified as gifted/talented at numeracy and literacy so from small troubled acorns, mightly saplings grow

Never presume for a minute they don't understand

I took our son for an assessment with a child development specialist. She did two tests on himthe lowe costello symbolic play test and the griffiths mental development scales revised. She then gave us the results broken into how he performed in about 5 categories, by age equivalent score and what percentile. I think the tests were quite good, but a lot of what he was asked to do (point out which one was the doll, 'make' a toy bed, 'lay' a toy table, he simply didn't have a point of reference for as he'd never done it before. The test also doesn't take into account that whilst he might not be great at, say, getting shapes out of boxes, he's really good at putting lids on things etc. That said, I guess it gives an indication of where you are and is worth doing, even though the results freaked me out a bit. It showed at least that our boy's understanding was fine, which was reassuring, even though his talking is delayed.

Let me know if you want more details.

Also - on the boots - we were told to get Baby Bottes, though I will ask the physio about the Piedro boots and see if there's a difference.

• H

Hmmm. I'm not sure whether to look up the tests or not, as DD (20 months) cannot follow any instructions at all, even if you use the same Makaton signs every day, has no idea how to take off or put on a lid, and still plays with most things by sticking them in her mouth or bashing them with one hand. However, she can get her glasses and hearing aid off within 10 seconds