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DD2 has GDD, would like to know what our future holds!!

(32 Posts)
mumgoingcrazy Sun 21-Sep-08 19:54:00

Hello all,
My DD2 is 15mo and has GDD (diagnosed at 6 months with just development delay). She is still just sitting, she's not moving although it does look like she's going to start bottom shuffling soon (DD1 did this and showed th same signs). She doesn't yet say anything and is yet to self feed. She receives weekly Physio, OT, SALT, Portage plus usual paed appointments etc.

She plays with things constantly and is always busy. We basically work really hard on her and her development is going the right way, but what I want to know is what can I expect? Is it likely she'll walk by 2? Will she be able to attend mainstream pre-school/school? I just have no ida where we are heading and it's driving me crazy. I would love to hear from anyone who's DC has GDD (no matter how old) and see what milestones they reached and when.

Sorry for the long blurb!!

moondog Sun 21-Sep-08 21:15:48

Hi Mum.#It's great that you have lots of support and are doing your best for your child with your hard work.

A good start would be to ask the relevant professionals for some reading/website recommendations. (I'm a salt in this area and would happily do so). Persist with this forum too and have a look in the archives. (Arabica is one regular poster with a small daughter with similar needs to yuor own.)It is a treasure trove of advice so welcome. smile

cktwo Sun 21-Sep-08 21:21:00

Hi, my DD1 had GDD and the one thing I've found out about it is that everyones LO is different!!

That said, I'll tell you a little about DD1 and hopefully it may help.

DD1 was late sitting as baby but not overly so (8 months), she then started to bum-shuffle rather than crawl. She never ever crawled and only started walking at 2 years and 2 months.

She is now 3.5 and attends a mainstream pre-school with a one to one worker int he mornings. She still cannot talk and we are working on signing which she is picking up quite easily.

We do intend to send her to a special school next year for many reasons. I think her speech and language will improve with the quality of teaching she will get over what mainstream will provide. She is also very small and wobbly (can walk but cannot jump, run etc) so I don't think she will be able to manage physically with the other kids.

She can feed herself very well and when she is well she is a very happy little girl smile.

vjg13 Sun 21-Sep-08 22:27:47

My daughter has GDD and is now 10.

She was late to crawl and walked at just over 2. Thinking back it was about 2 years 2 months like cktwo's daughter. She didn't walk with one or two steps but got up and walked round the room one day! She too was very unsteady and had LOADS of falls.

Her speech is delayed/unclear but I'm sorry I can't remember the milestones well. We moved areas and started makaton quite late for her, she was about 5, but it would have been more useful earlier.

She was always a poor feeder and drinker but this altered when she started school and she changed to a brilliant eater overnight. She was out of day time nappies at 4 and at night by 7 ( I used a bed wetting alarm which worked well).

She had a squint from about 2 and glue ear.

She went to a MS nursery which was fantastic, IMHO inclusion works well at this age. She went to a MS school for 1 year which did not work well, she now attends a resource school but still spends 50% MS and this doesn't work either. If I could go back she would have gone to a special school but we felt we were making the best decisions at the time.

She still has a strange running style but she does get around and rarely falls. She is generally fit and well. She loves Brownies, riding, swimming and trampolining. She still loves dolls! We have hens and she chats away to them.smile Hope this helps.

Arabica Sun 21-Sep-08 23:06:29

Hello mumgoingcrazy. Yes, as Moondog mentioned, I have a 26-month-old DD with GDD. And of course, every child with GDD is different. But just to give you a little bit of background, DD was diagnosed with ventriculomegaly (too much fluid on her brain) at my 20-week scan so we knew there may be problems with her development (although nobody could tell me what those problems might be!) She was floppy at birth and had problems feeding--had to be admitted to SCBU for a feeding tube, lost weight, and stayed 4 weeks whilst she slowly returned to her birth weight.

With the help of a very good physio and OT, DD crawled at 12 months and took her first step at 18 months. I can't remember when she sat up. She's still a bit wobbly, as her hypotonia has remained, but gets around just fine.

DD has a squint and wears specs, and also has a mild hearing loss which might just be wax blocking the grommets in her ears, or it might be something more permanent.
Her speech and fine motor skills are severely delayed, so communicating is a bit of a challenge--we're using Makaton signs but she isn't consistently signing back anything other than 'hello' yet and has no words. She also has ongoing feeding problems and is on a high-calorie milk as she doesn't eat much (although that is improving).

DD is at nursery 2 mornings a week, with a one-to-one keyworker, and we are in the process of going through the statementing process so that her educational needs can be identified. The words 'learning disability' are being mentioned.

If there is anything more you'd like to know please let me know!

HayleyK Sun 21-Sep-08 23:35:23

Hi,

My boy is delayed also. I'm incredibly impressed by what you've achieved in terms of organising therapies, portage etc. At 15 months, i was still digging my head in the sand and arguing with my family that they were all being neurotic and my DS was fine!

So in terms of milestones here's where we are:
- sitting at 9 months (though he couldn't sit himself up from lying down until 15 months), crawling at 17 months, pulling to stand at 19 months and taking his first very wobbly and unbalanced steps unaided at 23 months. He now can walk at 25 months and stand unaided, though his walking is wobbly and bit hoola girl like with arms in the air.

It seems that the physio that we have done has helped him reach each of these milestones and that he has had to learn motor skills which come naturally to other children.

His speech is delayed and he is limited to 'mama' (since 11 months), 'dada' and slightly distorted versions of his new baby brother's name and 'more'. He is starting to try to put words to people, but his words slightly mesh into one sound. He is starting to make various constanants sounds - bbb, nnn, www, but again not proper words. He can make various animal noises also and is starting Makaton signing, which he loves and is very receptive to. It seems that he understands everything totally.

We have just got a probable diagnosis of oral dyspraxia, which we are investigating more carefully this week, but it is early days for a conclusive diagnosis.

I totally get what you mean when you want to know where you're heading. It's also driving me insane. I have no idea how to categorise my boy - I just want to know now if he's likely to end up always needing extra help and if so in what ways - is he definitely going to talk etc. and if so when - so that I can prepare and come to terms with any problems that he's going to face in the future, or so that I can stop worrying if there isn't going to be a longterm problem.

Sorry - I can't offer much in the way of help, but I think there's quite a lot of us on this board that understand how you're feeling at the moment....

cktwo Mon 22-Sep-08 08:34:58

I think what you'll pick up from these posts is that none of us really know where we are heading and that can be the hardest to deal with.
It really gets me down some days, no knowing whether DD1 will ever be independent, or whether she'll talk.

It may be an old cliche but you do have to take it a day at a time. If I've done the physio,OT exercises or DD1 has learnt a new sign, I know its a good day and it helps me when we're having a bad day (like today sad)

mumgoingcrazy Mon 22-Sep-08 11:21:10

Hello, thank you so much for your input and stories. It really helps. I think we are very lucky to have all this help, she got into the system at just 6 months and have had the weekly physio, OT etc etc since she was 11 months. I know we are fortunate to have had this picked up so young.

She is mimicking sounds and actions when we do songs together but her fine motor skills really worry me more than anything. She will play with toys, pass between hands and have a toy in each hand at the same time (this is a recent thing). The problem is she is tactile defensive which has meant that for the first 9 months she never touched or played with a thing, she just looked at her hands all day (she was also deaf which we now know was down to severe glue ear). The deafness has cleared up thanks to intensive cranial osteopathy and her hearing is fine. So in my heart of hearts I'm hoping due to the tactile defensivness (which is now much better) and deafness she may catch up. I also think in my heart of hearts I'm not being realistic and I should just accept her for being her.

Arabica Mon 22-Sep-08 12:30:59

That's brilliant about the glue ear, although they should keep an eye on it as it can come back. Do you have speech therapy too?
Your OT and physio may be able to give pointers about walking. I spent a long time worrying whether DD might walk: later on, an OT told me that she 'always knew DD's mobility would be OK as she didn't present with any of the issues that suggest walking might be an issue...' which would have been brilliant to know at the time!
I found soft play sessions very useful, BTW, for encouraging DD to get around. Our local leisure centre runs one and there is also a portage drop-in with sensory play, etc--there may even be a SN drop-in in your area. It's only recently that I have gone to 'normal' play events as I used to find it upsetting that DD was so far behind her peers. Now it doesn't bother me quite as much.

HayleyK Mon 22-Sep-08 13:20:20

you may also want to look at sensory integration therapy. I'm not too sure what it is or if it's any good, but someone told us to look at it and I'm just starting to see if it's relevant! I'm just starting reading Sensory Integration and the Child, which was recommended to us and I got through the US amazon as it was fortune through the UK amazon.

Maybe others have ideas on sensory integration and if it's any good and when it is??

vjg13 Mon 22-Sep-08 13:42:03

I think it is very hard when they are little and you have no idea how they will develop.

I remember struggling with all the appointments, at times 3 a week and it really got me down. It also felt like a huge shock that this was to be the reality of our lives.

Over the years, she's 10 now, I've learnt to accept her for who she is and celebrate her achievements. I try never to compare her with an 'average'child her age as I would still be upset by this. I live day to day and try to get the very best help and support for her.

Romy7 Mon 22-Sep-08 13:59:32

dd2 was dx gdd very early. sat at about 12 months, crawled at about 15/6 months, used a standing frame and a walking frame from 18 months - walked independently at about 2 1/2 (but couldn't stand until past 3 lol - she could only stay upright as long as she was moving)
we were told she would be non-verbal and learnt makaton (her fine motor is also compromised so that was interesting!) but she started to talk some time after 3. her dx was changed to spastic quad cp at 2, and then to athetoid cp at 4.
she now walks and talks independently (not quite like anyone else, but copes very well - wc user for distance) and attends ms school with a statement and some 1-1 support.
we had portage from very early and physio/slt from birth, ot from about 14 months. we also attended a feeding and communication group weekly from 6 months, which was brilliant.
dd2 was 5 yesterday, and demanded a fairy castle birthday cake and dora plates (nicely, natch).

mumgoingcrazy Mon 22-Sep-08 20:31:51

Thank you so much for all your stories.

Arabica, yes we do have SALT weekly during our main therapy session with the Physio and OT. The SALT is very nice but I have to admit I don't rate her very highly. Having said that DD2's speech and language has always been ok, only delayed by a month or so. It's her Fine/gross motor skills that is the biggest problem really. Re the glue ear, we still see audiology every 6 months but each time she has a cold or ear infection we see our cranial osteopath to clear any glue that has appeared.

Hayleyk, would love to know more about sensory integration, or anyone else who knows what it's about and what it can do.

vjg13, I agree with you re not comparing DC to peers. I was with DD1's post natal group today, they have all had DC2's, my DD2 being the eldest. They are so far ahead of her it makes me want to cry. I'm very positive most of the time, I have friends with kids who have serious health and dev issues so count myself lucky, but then I have days like today where it's just in my face. If only I had a crystal ball.

cktwo Mon 22-Sep-08 20:57:29

mumgoingcrazy - could you tell me a little more about the cranial osteopathy please?

DD1 has just had grommets inserted for glue ear but my accupressure guy really recommended it.

I'm a little worries DD1 would not lie still for someone fiddle with her head. How did your LO react?

vjg13 Mon 22-Sep-08 21:09:20

Ww went to an osteopath for glue ear but also went the conventional grommet route too.
There is a children's osteopath clinic in Manchester and in London and you pay a donation for treatment. I have no idea if it helped but it was a gentle, non invasive appointment that she didn't mind too much.

mumgoingcrazy Mon 22-Sep-08 21:31:16

I cannot recommend cranial osteopathy enough. I was told that at 6 months DD2 was completely deaf and would need hearing aids. It was probably nerve damage (had complications with chicken pox at 6 weeks)but there was a chance it was severe glue ear. We clutched onto this and had cranial every 5 days for 2 months. We did hearing tests before and after the sessions and every time (except 2) she heard more things at the end of the session. She loved it and if she was at all fractious, the cranial lay her fingers in certain places on her face and DD2 calmed straight away. It was amazing, and worth every penny. I would definately have one recommended to you though.

Arabica Tue 23-Sep-08 20:48:40

I'm not convinced cranial osteopathy helped DD. Her glue ear was just as bad before, during and after her long course of treatment. It's hard to tell, of course, because who knows how much worse her glue ear would have been if we hadn't had treatment. Went to the Children's Osteopathy Clinic in London and then to a very highly recommended private cranial practitioner (who refused to charge us more than we paid at the COC, what a sweetie). It may be that DD's conductive hearing loss is caused by a bone malformation though--perhaps that's why.

mumgoingcrazy Wed 24-Sep-08 12:54:18

I think it's very hard to judge with cranial as it looks like they are hardly doing anything. If I didn't see the results for myself and see how the hearing tests were done before/after each session I probably wouldn't believe in it. DD2 was a classic case for grommits, her glue was so bad she had no hearing whatsoever. After the sessions (esp the early ones) I literally saw the glue come out with her 10 or sneezes that she did. Back in July audiology told us she had no glue ear anymore and were quite surprised. I think because I have seen the results twice (DD1 had glue ear and it cleared by using a cranial as well) I'm a very big fan.

mehgalegs Wed 24-Sep-08 13:06:06

Another one with GDD here. My DS4 is 3 now, he too was a very floppy baby with hypontia and hpypermobile joints. He had feeding problems too and I struggled on with BF far too long with hindsight.

He sat at 15 months, crawled at 18 months and walked exactly a year later at two and a half.

Physically he is catching up, he is able to jump and his hypotonia is improving, he can walk up and down stairs now too. He sort of runs, it's just very fast walking with a crazy arm action.

He feeds himself well now but he had an extremely sensitive gag reflex for a long time so it took awhile to get him onto solids (he used to choke regularly - scarey)He has just started to drink from an open cup.

He is still in nappies although shows occasional interest in the potty.

He attends MS preschool 4 mornings which he loves, and theraplay group on Fridays where he receives weekly SALT, OT and sees the phsio now and again.

He wears piedro boots to help his walking.

His receptive speech is very good but his expressive speech is poor, he babbles and gabbles and has a core vocab of about 30 words. He uses Makaton well.

He is being assessed for a statement and we are currently trying to decide which school would be best for him

He is loud, happy and manic and an absolute dream most of the time smile

anonandlikeit Wed 24-Sep-08 13:12:57

Hi mgcrazy, Like you i wish i'd had a chrystal ball. DS2 has GDD (amongst other things) & has really done better than the doom & gloom predictions we were initially given, particularly with regard to motor skills. He has also ended up with other additional dx that we didn't bank on!

From what i remember; DS2 rolled over at about a year old, sat up at about 16 months, didn't really master crawling but walked by about 2.

He had no language or communication at all until his first few words at about 2.5

He has only just (he's 5) started showing an interest in toys.
DS2 needed loads of stimulation he would just lay staring at the ceiling not seeking interaction otherwise.

He is 5 now, has GDD/learning difficulties, mild CP & ASD

but he is amazing, handsome & funny
He is at m/s primary has friends, his teacher loves him as does his 1 to 1.

mumgoingcrazy Wed 24-Sep-08 20:29:53

Thanks for sharing your stories anon and megs. I guess I'm going to have to just keep up with the therapy and cherish all her milestones whenever we get there. I'm finding it very usful and reassuring to know that thy all get there at some time, I'm just being impatient.

DD2 did however shuffle 2 feet on her bottom today (it took her about 10 minutes) so maybe she'll be on the move soon. I know it sounds daft but I can't wait for her to get into mischief.

HayleyK Thu 25-Sep-08 01:23:09

and me - can't wait until I need to tell him to sit down and shut up!

mumgoingcrazy Thu 25-Sep-08 10:29:46

Hayleyk, can you tell me what oral dyspraxia is and how you overcome this? Also, how are you getting on with your sensory inegration book, would you recommend it?

HayleyK Sun 12-Oct-08 20:27:47

must confess I only got a couple of chapters in and didn't seem that relevant to me, so moved over to read about oral dyspraxia (called apraxia in the US) as looks like this is definitely what our boy has. Broadly its where your mind understands what's going on and your mouth has the capability of forming the words, but the message between the two isn't getting there.

From what I understand it's when the receptive language is very good, but the expressive language isn't - problems with word sequencing and saying the same word lots of different ways. Lots of using one word to mean a whole lot of things.

This is the US site on it which seems to be the best, as the UK stuff all seems to lump it in with general dyspraxia, which isn't that helpful if your kid doesn't have the general dyspraxia
http://www.apraxia-kids.org/site/apps/nlnet/content.aspx?c=chKMI0PIIsE&b=839037&ct=838021

This is a cut and paste from the Nancy Kaufman site on apraxia to tell if your child has it - looks like that's a good site to google if you want more information also

Early signs & symptoms:

Limited or little babbling as an infant (void of many consonants). First words may not appear at all, pointing and “grunting” may be all that is heard.
The child is able to open and close mouth, lick lips, protrude, retract and lateralize tongue while eating, but not when directed to do so.
First word approximations occurring beyond the age of 18 months, without developing into understandable simple vocabulary words by age 2.
Oral scanning or groping may occur with attempts at speaking.
Continuous grunting and pointing beyond age 2.
Lack of a significant consonant repertoire: child may only use / b , m , p , t , d , h /.
All phonemes (consonants and vowels) may be imitated well in isolation, but any attempts to combine phonemes are unsuccessful.
Words may be simplified by deleting consonants or vowels, and/or replacing difficult phonemes (consonants and vowels) with easier ones.
Single words may be articulated well, but attempts at further sentence length becomes unintelligible.
Receptive language (comprehension) appears to be better than attempts at expressive language (verbal output).
One syllable or word is favored and used to convey all or many words beyond age 2.
A word (may be a real word or a nonsensical utterance) is used to convey other words beyond age 2.
The child speaks mostly in vowels.
Verbal perseveration: getting “stuck” on a previously uttered word, or bringing oral motor elements from a previous word into the next word uttered.
The child has difficulty moving the tongue where they want it to go.
“Pop-outs” or automatic words and phrases are spoken clearly, but they cannot be imitated when directed or may not be heard again.
Other fine motor problems may be present.
------------------------

It's really important to find out if dyspraxia is causing your child's speech delays as the ways that it is treated seem to be completely different to other speech therapy - so that we've spent the last six months doing a type of speech therapy which really hasn't helped our boy at all. We're now doing a very structured program specifically for dyspraxia.

I'll look back into sensory integration as from what I'm told kids with dyspraxia should do it as part of OT, even though my boy doesn't have issues with textures, loud noises etc which also seem part of it (as you can see I haven't read the book so still don't really know what I'm talking about!!!)

Good luck with everything

cheekychaps Tue 14-Oct-08 21:50:59

Hi mum, thanks for asking the question that i've been asking the specialists for the last few years.

Our DS has GDD, diagnosed a about 7 months, he's now 3 and has just started bum shuffling in the last month, getting speedier every day (hoorah!). He's just started at 2 different pre-schools - 1 Mencap and 1 mainstream, he's only been going for 2 weeks and already I can see a big difference. He's trying really hard to talk which is great.

I know he will get there in the end. I think it just makes you remember and appreciate the development milestones even more. I ring my family and friends every time he does something new - it's great!

I would love to hear from anyone else who has DC with GDD, I have trouble finding parents going through the same thing.

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