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Developmentally Delayed Baby

(13 Posts)
sioba Mon 22-Apr-13 16:48:36

My 9.5 month old is developmentally delayed, has agenesis of the corpus collosum and some nerve conduction abnormalities. He isn’t sitting yet although seems to be getting there. He can roll from his back onto his front but not from his front onto his back. He has quite low muscle tone especially in his core. He doesn’t use his hands much although he can bring them to the mid-line, put them in his mouth, will put toys, finger food in his mouth if you put them in his hands. He does not reach out for things – although does occasionally grab or bash things. It is not entirely clear that he is doing this on purpose. He does not babble but gurgles and coos and blows raspberries. He is super smiley and a very charming baby. He actively seeks out eye contact and loves people (is very sociable).

Currently we do not know what is causing his issues nor do we have any prognosis. I am struggling a bit with this – in that I would love to know what to expect. Is there anyone out there whose child has similar issues or was at a similar level of development at the same age? How did it turn out?

What did you think helped – I think physio is really helping my son. He is on the list for OT but the list is really long – can anyone recommend a good private OT in SE London? Are there any other therapies/therapists that anyone would really recommend? How about toys and activities? Currently the 9.5 month old just fits in with his older brothers schedule (except when he has physio or doctors appointments) and he doesn’t really play with toys much. I’d love to have some toys that I felt he liked or do some activities that he likes and that are catering more for his needs. He currently goes to a physio led carer and baby group once a week and a baby singing class once a week. Any activity would need to also accommodate his 3 year old brother.

ouryve Mon 22-Apr-13 18:58:19

DS2 has ASD and was delayed, but not quite so much, as a baby.

As far as toys are concerned, we've always bought according to his developmental age, so for your DS, stick with things that are attractive for him to hold and explore, either because they have interesting textures or make a noise, as would appeal to a younger baby at the same level. Don't be precious about toys being wooden and organic, either - jingly plastic electronic tat might just attract his attention enough to encourage him to be less passive.

Portage were useful with DS2. He was 2 before they started working with him (they do work with younger children) but at that age, he was mostly throwing things around and I wanted him to learn some manipulative skills - they had a huge selection of toys at their disposal and we managed to find out what made him tick (and that's he's a devious little so and so who will do something once, just to get someone off his back, then refuse to do it ever again!)

fasparent Mon 22-Apr-13 22:41:30

www.corpal.co.uk is run by parents of children with your little ones condition , think they would be best placed too offer support and advice
my daughter has problems with dysfunctions of corpus collosum but has managed too control this with supplements' and exercise found out when she was just 2 months. All children I suspect will be effected in different ways. Think you will learn more from engaging with other mums similar too you.

fasparent Tue 23-Apr-13 01:00:35

Just had a glance at corpal Webb, wish it was around when our dd was younger. lots of info and case's as I thought all children are effected in different ways. Webb offers professional Support off consultants with Q&A's. with lots of useful news letters.

sioba Tue 23-Apr-13 09:03:11

HI again,

I have e-mailed corpal but not got a response. The ACC thing I find a little disconcerting - if you look it up on the web it seems quite bad. However my sons doctors (he has lots a neurologist, geneticist and pediatrician) all said that it is an incidental finding that does not in explain his delays. A lot of people with ACC live perfectly normal lives, only finding out about the ACC when they have an MRI scan for an unrelated reason. All the doctors agree that people will ACC are likely to be clumsy, a bit uncoordinated and a little bit socially awkward. But I am all of these things so it is not surprising that my son might be.

The nerve conduction abnormalities, I think might explain his delays a bit more – but to be honest I am not sure I really understand how they are going to affect him. Well I guess neither does his neurologist – its just a waiting game. I would love to be able to talk to some parents who are having similar issues but I can’t seem to find any.

Thanks again,
sioba

fasparent Tue 23-Apr-13 09:55:06

Agree with you have to look at positives from day one, our dd has lots of associated problems, but achieved well , still has the problems but is working full time, just passed her driving test , Is still fitness mad think it was her passion for exercise and sport which helped her . She was home schooled until College , Learning takes 4 times as long , all have to be patient and understanding as she gets there in the end.

fasparent Tue 23-Apr-13 10:11:19

Agree with you have to look at positives from day one, our dd has lots of associated problems, but achieved well , still has the problems but is working full time, just passed her driving test , Is still fitness mad think it was her passion for exercise and sport which helped her . She was home schooled until College , Learning takes 4 times as long , all have to be patient and understanding as she gets there in the end.

fasparent Tue 23-Apr-13 22:07:17

Agree with you again regards inclusion with siblings we did this at a very early age dd was 2yrs 6 months started Gymnastics with brother age 4
both went on too be good ds was selected for team GB three years on the trot so no fluke. DD was in elite but unable too compete due to her small frame and central nervous system dysfunctions, but still went on to become a gymnastics coach. You will learn as your child develops and find which strategy's work for you the best, for yourselves child and family as all are effected differently. Just remember its strategy's not solutions and enjoying life as a family. Sorry if I am ranting on a bit
but been down the road.

Second the recommendation for portage. They are brilliant at suggesting ways to help develop your DC at home through play. And they're free!

www.portage.org.uk/

redwellybluewelly Tue 23-Apr-13 22:28:32

I can recommend portage, they were superb with our DD who suffered brain damage at birth. Also get in touch with Contact-A-Family who are great for linking up with others. Are you undergoing any genetic testing? SwAN (syndrome without a name) can be helpful wuth very unique or rare combinations of medical issues as the name suggests.

Re nerve conducting issues. Have you looked at diet at all? We've seen improvements with givibg DD high doses of DHA and fish oils, she has better coordination and seems more aware of her surroundings when she has had high doses of DHA. I was sceptical and chose to take the same supplement and I did find it improved my concentration. DD's damage is to the basal ganglia which controls movement and also the bit of the brain all over which carries messages to the brain.

sioba Wed 24-Apr-13 08:42:09

I'll definitely look into portage - it seems similar to home play - I have asked my sons physio to put us on the waiting list for Home Play also.

With the suplements - what age did you start on those? Is he too young? Could I just go ahead or should I wait and ask his pediatrician first? He is currently on meds for reflux and on neocate in conjunction with a dairy free diet as we believe he has a cows milk protein allergy.

Your area may well call portage 'Home Play.' The website has a 'where' link that you can put your postcode into and it tells you the local centres for portage. If you put yours in it may well come up with your local 'Home Play!'

redwellybluewelly Wed 24-Apr-13 10:29:24

Many areas you can self refer to portage/home play, can recommend doing so if you don't get a timely response from physio - we waited an age for ours only to discover that the physio and the head of portage had had a conversation in a corridor about my child (!) and decided she wasn't affected enough.

Many months later I self referred, portage came within a fortnight and gave us an instant place.

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