Developmental delay - any advice?

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Hi there everyone, I posted a thread a while back about developmental delay and epilim, and everyone was so helpful but I am still feeling anxious about DS1's developmental delay and wondered if anyone has any experience of this or advice re books I could read? I would like to know more about why it happens neurologically and I guess deep down what I would really like is some reassurance re the future too. I have no idea what this means for DS1/us in years to come. What's the percentages of him catching up/not catching up? Although he has come along really well developmentally in the last 6 months since he came off the epilim (he has remained fit free, and his comprehension seems to have shot ahead of his motor skills), he is still not walking or talking at 2.7 months. Does anyone have any experience of developmental delay without any other associated diagnosis?

His history by the way is that he developed absence seizures at (we think) 3 or 4 months old and became very floppy, had a febrile convlusion and was put on epilim at 9 months and stayed on it for a year during which time he made virtualy no progress in his development. He is now very active, crawling and into all his toys but still has poor fine motor skills and as I say is not walking or talking, though he is very communicative in other ways, and has good relational skills.

Sorry I haven't posted much by the way - I feel guilty that I am not able to reassure others - I read a lot of other peoples threads but don't feel qualifed to comment most of the time as everyone seems so much more experienced re special needs than me, and I'm scrabbling in the dark with no diagnosis/prognosis or anything.

Sorry Pages - can't add any useful advice . But can empathize - my ds2(18mths) has global delay with no dx and the future is all horribly uncertain and frightening

I wouldn't worry about not posting often and not being able to reassure everyone. Like you, I feel that most of the other peeps who post on here are further down the road, with a wealth more experience than I have. But often I feel moved to just offer a bit of human compassion (just to let people know they are not alone) - as I know that I always appreciate that too - but when someone is after real specific advice I often leave it up to others

Thanks Merlot, what is your DS2's history? Has anyone given you any idea why it has happened?

Hi Pages,

I would like to say that you are by no means alone.

Developmental delay affects on average around 3 in every 100 people. There are varying degrees of delay. My son's gross and fine motor skills have all been affected but progress has and continues to be made. I was originally only told to worry if my son regressed.

My son was diagnosed with both developmental delay and speech and language delay at two and a half although we knew there was something amiss long before then. The underlying cause/s of my son's delays are not apparant (I would dearly like to know why this happened as well but cannot let it get to me anymore) and often therefore the causes are unknown.

The nicest thing any professional said to me was "it is not your fault that this happened". I will "say" the same to you - do not blame yourself and beat yourself up over it, that though is very hard to do.

I cannot unfortunately comment on epilim as have had no experience of it.

The best website I ever came across on developmental delay is an Australian one - would be glad to give you the details if you want.

My son has made a lot of progress in the last four years in particular. He can participate fully in mainstream school, he is accepted by his peers. He is still behind in terms of some aspects of development like reading and his pencil grip is not great but we fought for and got a Statement of Special Need for him - this enables him to have extra classroom support. I know this much, if my son did not have a statement he would not be doing as well as he currently is.

He is still in the system of appointments with the developmental peadiatrican, speech therapist and occupational therapist.

I wish you well, feel free to CAT me if you wish.

Meerkats

Many thanks Meerkats. How old is your son now? When did he first talk/walk? I would really be grateful for the Australian website address - I can't find any that say anything useful.

Hi Pages,

This is the website in question:-
www.rch.org.au/paed_handbook/dev/index.cfm?doc_id=2504

DS is now 6 years of age. He started to walk at 16 months of age, talking came much later probably around towards 3 years of age. Now he chats away!.

I hope the website also helps, if you want to CAT me please feel free.

Was wondering what part of the country you reside in, we're in Essex.

With best wishes

Meerkats

I am in Oxfordshire, but used to live in Essex. Have CAT'd you, if you want to get in touch I'd love to have more of a chat.

Thanks again

Pages

Sorry to bump this but just wondered if anyone else has had experience of a child with developmental delay and no other dx, and can give some clues as to what I can expect further down the line?

in our experience speicialists/drs etc can never really say how the child is going to progress - presumably depending on the situation and they do not have an answer for such a question. we've been told this all along - long story but in short ds born with rare brain tumour, causing hydrocephalus when tiny, and hole in heart, 3 major ops to cure all, followed by global/general developmental delay. only last wk/wk before neurologist said at annual check up that the way ds is now, what he is/isnt doing, acn/cant do is because of the hydrocephalus he had when tiny. we're happier that we know that now and perahaps a bit more how to help him and we still take each day/wk as it comes. perhaps its only now as he/a child gets older can specialists see exactly what they are/n't doing. he is progressing all the time though and its great to see that. we just have to sort out education now - another long story.
hope this is of some help/to you. my advice would not to worry too much - let all the therpaists do their bit and oyu carry on they're oding at ohm etoo and over time they'll cATCH UP. WE FOUND THAT DS WOULD PROGRESS IN CERTAIN THINGS AFTER LOTS OF PRACTICE THEN PLATEAU FOR WHILE BEFORE HE DID THE NEXT NEW Thing HE WAS SUPPOSED TO DO (sorry for CAPITALS)!.

Hi pages. I totally understand your concerns. My dd is 2.5 yrs and sounds similar to your ds.

I think unfortunately the reality is that no-one can really predict what your ds is going to be able to do. And if it is any consolation at all I do have a diagnoisis for my dd but still I have no real prognosis. So although I understand it must be hard not to have a diagnosis, please don't wonder if it would wave a magic wand for you and give you all the answers. It doesn't.

One thing that someone (merlot? chonky?) mentioned on another post is that if your child is sitting by the age of 2 they will probably go on to walk. I found that really reassuring.

I suppose the way I look at it is dd will be able to do what she is able to do. It is my job to try and help her reach her potential. But whatever that potential is, is out of my control.

I also try not to look too far ahead. I suppose in my heart I hope that she will walk and communicate (don't really care if that is talking or signing or PECS or any other system). If I look down the road and imagine for example that she is 10 and can't walk, it does upset me a bit. But I also realise that by the time she is 10, and she can't walk, I will have come to terms with it. In the same way that when she was 6 months old, if I had known she wouldn't be anywhere near walking by 2 I would have been upset. But now I am there, it isn't nearly so worrying IYSWIM.

Pages - sorry, missed your second post. No-one has given us any answers yet, but as one of my SIL's has learning difficulties we are wondering whether it is anyhing genetic? Off to see the genetisist on Tuesday.

My daughter was diagnosed with a global development delay when she was 18-20 months. She still hasnt got an "official" diagnosis at 5 1/4. She is still classed as moderate/severe global delay, although she has also got microcephaly which is causing the main problem I think with her learning disabilities.

She walks, say one/two words sentance but is still classed as "non-verbal". She uses makaton signing as her main form of communication, she walks, runs, sits, thinks she can swim It is hard not knowing what will happen in the future, but I tend to agree with HITC that if she isnt doing AB&C by the time she is ten we will be dealing with it anyway so it wont seem as hard as maybe thinking about it now does

Hi Pages,

My dd currently has an undiagnosed dev delay. She is now almost 11 months but still only has partial head control & cannot sit without a lot of support.

I agree totally with what HITC says about taking it one day at a time. That's not to say that I don't feel very anxious about the future for her, but I'm hoping that at 5, 10, 15 years old dh & I will be 5, 10, 15 years more experienced as her parents, and hopefully wiser too.

We have an MRI scan next week and I feel that I have a complete paradox of feelings, half of me is desperate to have a diagnosis so that we can hopefully get more help for dd (& stop scrabbling in the dark as you put it), however I'm also terrified in case the prognosis is poor.

HITC, I think it was milge that said that if kids sit by 2 they will walk. I certainly take comfort from that on my negative (read PMT ) days.

Good luck with the MRI chonky

Thanks Merlot - sorry for having gone quiet on the BIBIC/BW stuff, I've just been trying to control my MN addiction Flippin' impossible!!

Good luck with the genticist too. We saw one last week, she has a couple of ideas to go on if the scan results don't show up any hard markers this time.

Hi pages, my dd2 has global delay with no diagnosis, age 3yrs 10 months. She seems to be progressing through the stages at her own rate - she learnt to crawl about 6 months ago, first commando, now almost on all fours, then progressed to reaching up to the sofa with one arm, now is kneeling up at the sofa. I am daring to hope she will eventually walk! She also seems to have just reached the terrible twos behaviour-wise!

About a year ago, I felt as if none of this would ever happen. I agree with chonky to just take each day at a time - and not to look too far into the future. There are so many uncertainties.

Good luck with the MRI chonky - see you Thursday?

Thanks Caroline5 - see you Thursday Hopefully will be able to chat a bit more this week!

hello Caroline5 I had wondered where you had got to

Good Luck with the MRI chonky, we are waiting for an appointment for ours
and good luck with the geneticist Merlot

Hey Caroline5 - haven't seen you in ages. How are you?

Good luck with MRI chonky and geneticist Merlot. By the way I hve asked my Mum about Brainwave. She said she had heard they were thought to have 'gown downhill' a while back but are now thought to be okay again. She is going to do some more digging around so I'll let you know.

Hi HITC and Keane (!) Sorry I've not been around much on here recently mainly due to excessive work and other 'personal' problems. Keane I am going to reply to your email now ! (Another new name??!!)

Hi Everyone -

Chonky, no probs about going quiet on the BIBIC/Brainwaves stuff - you dont need to tell me about MN addiction

Thanks HITC for your mum's view on Brainwave (I think BIBIC is probably more for ds2, but everyone I know that has been to Brainwave seem to be very happy )

We went to the Geneticist today and they have decided to focus their attentions on overgrowth syndromes - Ds2 is very big for his age greater than 99.6 centile for height and head circumference (while dh is only 5' 9" and me 5' 5") and Ds2's head is 53.5 cms whilst mine is only 55 cms . More blood tests for the poor chap!

Keane are you that fine figured lady?!!

Thanks everyone, and good luck with the MRI and geneticist Chonky and Merlot. I think everyone has just confirmed to me what I am experiencing anyway - on the good days I feel completely fine and "what will be" about it and on the bad days I feel desparate! Hormones?

By the way DS1 was sitting up at 10 months but then didn't do anything for a year while he was on epilim and then started to crawl at 2 years, when he came off it - so I still think the drug was a factor. But I guess only time will tell for all of us.

hi pages

i have a daughter who has just turned 2,she has a development delay in all areas she is not yet walking or talking and has no skills (as in posting,stacking)she only rolled over when she was 11 months old.I wonder if you have found any good information ,advice in relation to development delay?
thanks

kk.

Hi Elliemae

Only the advice on this thread, I'm afraid. The website that Meerkatsunite mentioned (see below for link) was the most useful I've seen, but I think the general concensus is that it is a bit of an unknown quantity really, and that only time will tell in each child's case. Have you got all the agencies involved and had tests done? With my DS I have found all the input he has had i.e. phsyio invaluable and his fine motor skills are improving all the time since he learned to crawl. Have you had a hearing test done?

hi pages,

my dd has help from physio ,speach therapy and has had eye and hearing tests.She has low muscle tone in her ankles and has congestion in her ears from colds and from having oxygen when she was born.DD WAS BORN 4 MONTHS PREMATURE and needed oxygen for 12 months and spent 5 months in hospital on a ventilator,she has chronic lung deisese and ashtma.She also had 2 eye operations when tiny as she had ROP an eye condition that can leave you blind ,luckily her eyesight is fine but she is left with a squint.

So there is plenty of history and she is improving daily,but it is such a worry thinking about the future.I have tried the website link but i cannot get any joy !
thanks ELLIEMAE