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Global development delay ... anyone else been told this and then all fine??

(24 Posts)
longagegap Sun 14-Jun-09 23:41:49

Hi i was on few months back when my son was bein sent 2 a develpment clinci. From that he has been havin physio and speech and other things to do , He will be 1 in a few days time . He still isnt sitting but is trying to , had him at an eye clinci , so they think he can see faces but still wont follow objects , he is waiting an appointment for an EEG test that should be done in next few months and still an MRI scan when he is 18 months , i know he cant do much but when u look at him he is always smiling and seems like there is nothing wrong with him , so does make me feel like times that he is just slower than ones of his age and then other times he is still like a 4-6 month old baby , think its not knowing what is ahead and if i knew what out come is goin to be , then it would be easier to deal with. Its hard to talk to people who arent goin through this cos they dont understand and cos few of the kids are all the same age and i see what my son isnt doin to their kids it can be hard , but i love him so much and hope its nothing really , for his sake than mine , its just the waiting time , 2 weeks before i had him his heart rate kept dropping and they toke me in to start me but as there was such a baby boom and no room they sent me home , this keeps playin in my mind if this could be the reason my son is like this , just venting out my feelings ,but as long as he is happy then so am i , thanks for letting me vent

donkeyderby Sun 14-Jun-09 23:50:01

GDD often just seems to be a term used when the doctors don't know what is wrong. Presumably, if they don't know, it is just an agonising waiting game for you. You can - and possibly should - request to see your antenatal and birth notes from the hospital and go through them with someone. You are entitled to do so but unfortunately, doctors aren't known for readily admitting to their mistakes, (the hospital won't want to be having to make a huge payout for medical negligence). I don't know if you can get independent advice on the care you received, but it might be an idea. Others may know from experience.

By the way, my son was diagnosed as being completely blind at 6 months but went on to develop reasonable vision, as it was to do with brain development, not the structure of the eyes, (cortical visual impairment). They don't always get it right.

longagegap Sun 14-Jun-09 23:59:25

thanks i'll look into getting my notes . They think his sight is delayed as most of his sense are , only one that isnt is his hearing , trying not to think to much into all thats ahead but its hard not to either , think once the test are done and if i get an answer things will be easier its just the whole waiting game

madwomanintheattic Mon 15-Jun-09 10:18:06

dd2 was dx developmental delay initially and confirmed as spastic quad cp just before she was 2. in our case we knew from birth that there were likely to be developmental problems as she was an HIE baby and spent 5 weeks in scbu (and left hospital with problems with muscle tone and therapy referrals), but they still wanted to wait and give her therapy support for the first couple of years until they 'officially' dx her. the brain can often do a lot of developing over the first years, and so a child that can look very complex early on can continue to develop and gain new skills.

have you asked the consultant? in our case, the paed was a bit shocked that we actually wantd a dx (as well as potentially not wanting to admit cp officially in case of a medical negligence scenario)

dd2 wobbly sat at 12 months, but had been having physio from birth, and lots of other input. she carries on reaching milestones - just slower than NT kids, and is as stubborn as a mule. she's currently in love with her ski instructor lol grin and wants to skateboard.

the first few years are hard - i always imagined that by 5 all my questions would be answered, but tbh you just get new ones! i try now not to wish my life away waiting for answers, and try to spend a bit more time in the present lol!

good luck with the physio and slt x

FioFio Mon 15-Jun-09 12:30:37

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longagegap Mon 15-Jun-09 21:11:24

Thanks for the replies , i couldn't imagine my life without him , he is who he is and thats why i love and adore him so much . Maybe cos he'll be 1 year old in 2 days it has hit in a bit more as its not easy to get him toys he'll play with , if you understand what i mean by that . They started baby massage with him today from a local support group so he has had a very calm and lazy day and just didnt want to play at all , wanted to sleep all day but was very unsettled as well . Hopefully in the morning it he'll have more energy .Days when he is very quiet and just cries are the hard ones as u dont no what is goin on with him . I can only take one day as it comes and thats what i plan to do , its just cos i'm bringin him up on my own with a teenager and dont want to bother her talkin to her about this , its good to come on here and talk to people goin through or been through the same thing , thank you x

FioFio Tue 16-Jun-09 13:18:07

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Arabica Wed 17-Jun-09 00:17:55

Hi longagegap, I also have a child with GDD. She has regular physio, OT, speech therapy, etc. She is coming up for three now and she is a beautiful, lively little girl. Two years ago I worried that she would never walk, but at 18 months she took her first step. We're still waiting for the talking--she says the odd word, but nothing very useful. As time has passed I have become more used to the idea that her development will follow a different trajectory. But yes, it's still hard when I go to a 'normal' drop-in and all the other 2 year-olds seem to be able to focus on activities for more than DD's 30 seconds, or I get asked 'is that baby deaf' when they see me do makaton signs...

Are you having portage? This can be a wonderful way of doing something positive with your little one.

ilovepeppapig Wed 17-Jun-09 21:00:08

my dd was diagnosed with GDD at 18months. She wasn't walking or talking. The doctors thought she was deaf and she was learning makaton.

Now aged 7 she has mostly caught up. Her speech is ok but some people misunderstand her as she can not pronounce some sounds.
Physically she is a bit slower, cant ride a bike or skip.

She attends a mainstream school (but is the lowest in her class at everything) as she does find learning so hard.

She is however very funny and has a great sense of humor and loves animals. she is a really happy little girl with a great imagination. She has friends, even a best friend, and is accepted by peers. She is becoming independent and now spends a day in the holidays at the stables!

I do remember what it you are going through but try and remain positive.

dd had speech therapy, physio, occupational therapy

longagegap Thu 18-Jun-09 11:10:06

Think its the waiting on them telling you this will happen and not happen or they say they'll make an appointment for this and you never hear back and have to chase it all up . He turned 1 yesterday and he had a good day , but got a back tooth so this will be fun now , he has speech therapy later on today which people find strange at this age , he doesnt say anything , but seems to love to grawl at people lol he has 3 times so far been able to get back off his tummy which is good to see , he can roll on to his tummy but only one way , and is starting to also look at objects more . Its a learn of terms i dont no when people post on here so think i need to look them up , thanks everyone

Arabica Thu 18-Jun-09 13:01:20

www.earlysupport.org.uk has loads of useful information--it's really worth having a look around. The trouble is, nobody working with your child (with the possible exception of portage, and some keyworkers out there) will regularly have or make time to sit down, focus on you, and explain things.
Have you been on the www.cafamily.org.uk site, this is also good to keep bookmarked, you can search for information and find support in your area (if any).
Hope they help--and if you don't know what any of the terms mean just ask and someone will get back to you straightaway.

Woooozle100 Thu 18-Jun-09 13:45:17

just wanted to say hi longagegap. Hope you all enjoyed yr lovely little fella's 1st birthday

I think my first post here was pretty much like yrs. DD is 4 now

I'd echo what everyone else has recommended about Early Intervention groups / stuff

misscutandstick Thu 18-Jun-09 14:01:07

Longagegap: DS5 has GDD, he is 3.1y but has a delay of around 18mths. He is still non-verbal, but is doing LOTS of makaton! He learned to walk at about 15mths, and has only just learned to roll from front to back. He always looks like he only learned to walk a month or so ago and is very wobbly. He cant jump yet either.

BUT, he is a lively little bundle of happiness and fun. Has a lovely sense of humour, and the cheekiest grin. He is very affectionate (on his terms) and doesnt have a mean bone in his body, his sincerity and innocence is a joy to see, his forgiveness is only comparable to a saint, the amount of awful tests hes been thru and still comes back and smiles. No, he isnt 'normal', hes better than plain ole boring 'normal'!

The terminology will come with time - if anyone says anything that you're not sure of, cut them off dead with a quick "OH? ive not heard of that, whats that?" they really wont mind explaining, they forget that most of us are just mere mums wink

misscutandstick Thu 18-Jun-09 14:18:18

i asked this question on 'ask' some time ago...

just here

and here also

i appreciated the answerers honesty.

FioFio Thu 18-Jun-09 15:38:36

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donkeyderby Thu 18-Jun-09 16:18:33

Longagegap, I suppose most parents who've had GDD babies who then 'caught up' may not be posting in the special needs section any more. Worth a thought, as I'm sure some do catch up.

misscutandstick Fri 19-Jun-09 14:47:22

yes fio, its an horrendous place to be - the not knowing, its a million questions without answers.

Im sorry if ive offended, i really didnt mean to, i think what i was trying to say is that i think everyone with a child with GDD thinks "are they going to catch up?"

And whilst they might not "catch-up" in the traditional sense (and im sure you are right DD some do) that they will take their own path and it will feel 'right'.

In DS5's case his delay is getting bigger ATM because of 'typical' developement being faster than his developement. But im sure at some point the difference wont be as large and it wont matter by that point anyway. (like the difference between a 12y/o & 18y/o, and a 32y/o & 38y/o, both are the same gap, it just doesnt matter much anymore.) And it certainly DOESNT detract from who he is, as hes never been anything other than who he is.

But to conclude. Its a horrid hurdle to get over, and while you do its extremely distressing. XXX

longagegap Sat 20-Jun-09 08:48:42

Thanks again everyone i will look up the sites you've said about , i dont think my son will catch-up to his age group , but as long as he is happy then so am i , As i'm goin through this on my own i'd rather know what is ahead than being told everything will be fine , he has to see his big baby doc on Monday as he has had few funny spells were he goes into a daze and lose power in his arms , been hard last few days with him as he has cut a back tooth and isnt happy at all , joys of parent hood . I wish everyone well with their own children and thanks very much for the in put from everyone x

vjg13 Sat 20-Jun-09 10:17:56

My daughter has GDD and is 11. She has always followed a typical pattern of development just at a much slower rate.

When we were told at about age 21 months my main concerns were will she walk and talk. The paediatrician said yes but she will never catch up and he was right. It was brutal but realistic for her and there wasn't anyway to sugar coat it.

Focus on getting your child all the help and support he needs. Do lots of research about what is in your area and talk to lots of parents. When he does hit 'milestones' it will seem like a miracle. I stood with tears streaming down my face when my daughter took her first steps.

longagegap Mon 22-Jun-09 21:50:24

Hi had him big baby doc today so they are pushing his MRI scan on now rather than waiting till he is 18 months , they think his swallow is going back wards and his head is a bit smaller than what it was when he 1st seen them at start of April (dont know why their head goes smaller ) ??? Glad its being pushed on but also scares me a bit as well although i would like to know what is wrong . She said his right hand side is funny cos of sensory problems , still feel like i'm in the dark and dont know what it all means

misscutandstick Wed 24-Jun-09 08:02:32

Longage, no ive never heard of a head getting smaller either hmm, perhaps (and i rather suspect this to be the case) that they either meant:

that his head isnt growing as is typical and is growing more slowly than they would expect, but this often isnt indicative of anything in particular, but just needs to be kept an eye on in case something else pops up.

or

They are pretty useless at measuring heads (and there was a thread on here a little while back when a mum got terribly upset because her babies head 'shrunk' by 3cm in a week hmm turned out to be absolutely nothing) as all professionals tend to have their own way of measuring hmm its extremely unreliable and an MRI is much better and gives a clear explanation of whats going on, if anything.

good luck with the MRI - DS5 has GDD of around 18mths (hes 3.1y) and is currently waiting for a appt for one. Incidentally - and this is in no way indicative of anyones child except mine - but when i requested one his Paed said "well i would be very surprised if something didnt show up, but its very unlikely to give a diagnosis, but more of a clue as to the extent of his delays" I said that it may give more clue as to his future? He replied "well, we already have 3yrs of experience of that dont we? i dont think that an MRI could tell you anything more than you already know..." Background: DS5 was slow to reach milestones, non-verbal, functions at 12-18mth level.

longagegap Fri 26-Jun-09 10:54:16

Thanks misscutandstick .. I looked up about the head thing , says their brain isnt developing at rate it should , think they might have got the measuring wrong about it being smaller than what it was in April but it hasnt growing rate they want it to . I hope your one gets a diagnosis . I think some of them just dont know and you'd like an answer but if its lucky we get one , thank you

vjg13 Fri 26-Jun-09 11:45:08

My daughter had an MRI scan when she was about 3. It didn't show any abnormalities but I was still glad she had it to rule things out. She had oral sedation for it which she did not react well to and it was very hard restraining her even then and would have been impossible if she had been bigger.

longagegap Mon 29-Jun-09 11:39:03

They are putting my son under general for it to be done , thats all i really know about what will happen , still waiting on word of when it is

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