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  1. #21
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    I have a question, and I probably will sound/seem a bit stoopid for asking, but here goes. What is the long term situation with GDD?? Is it something they will out grow, will they with all the therapies catch up and be just like their peers, or will our babies with GDD forever be behind?? I can't find anything online, and honestly, I didn't think to ask when we got the diagnosis.

  2. #22
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    Hi everyone
    We had our first OT visit today, hopefully she will be able to help us with some of our sensory issues and help to progress our feeding onto more lumpier textures. Ash has been sick this last week with another cold so, bit backwards with our physio at the moment.
    Damamma- I think it depends on the reason for the GDD. In our case we don't have a full diagnosis yet but going off our MRI which showed whitematter loss and not as much brain development as expected for his age- Ash is always going to be behind. It would be an individual thing, and its not a stupid question. Some kids with GDD do really well with therapy and catch up to their peers.
    Alpacamum- Thanks for the compliment. It was really hard work to get rid of the tube, not easy at all, but I'm so glad its gone now. I have to keep reminding myself that he has done really well just to get rid of the tube and be tolerating some lumps. He only took the bottle for such a short while, but he has his suck back which is great- our drinking is alot better now. He has a sippy cup wouldn't go near a bottle after his reflux and aversion. Thanks for the info on the playgroup, I wonder if there is anything like that in vic?

    mummyof9kids- that made me teary, its great that the school is supportive of your lil guy and that the supported class teacher makes time for him. I hope when we get to school in years to come we find similar support.

    ENT appt tomorrow, I'm guessing we will find out about whether Ash willbe getting grommets or not.

  3. #23
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    Alpacamum- My 2 will be 3&4 in May...

    DD got excepted in the dept of Ed early intervention program and goes to Pre school and speech.

    DS is a bit of a pain at the moment he went to hospital on the weekend... Not sure how he will go but lots of therapy for him.

    I work in disability also... And we attend a development Playgroup..

    Yep busy busy but it's all I know

  4. #24
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    We had a pediatrician appointment this morning. I asked a load of questions and was happy with most of the answers. My little man is growing well, small for his age, but all in proportion. Nothing to change as we are doing everything we can at the moment, just have to keep things as they are for now.
    We got sent for a blood test (2nd one for my little Bug) and he was so brave. He didn't make a peep at all, but one little tear did roll down his cheek. So sad. They are going to do chromosomal/genetic tests to see if there is anything behind the GDD. Apparently the tests won't be back for about 4 weeks though!! So now we just play the waiting game.

  5. #25
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    Default Awaiting diagnosis

    Hello,

    I am new to this forum, but thought it might be nice to share my experiences. I have a 2.5year old boy who has GDD. He is a very happy, healthy little man that is very affectionate, easy going. He never has really had a tantrum and is happy to go with the flow, is not bothered if the routine is changed. He LOVES books, but likes to look at them by himself. He is very independent, but yet is quite happy to be amongst the kids when he goes to childcare two days a week. He has never pointed, waved or clapped and has really no speech apart from mum, dad occasionally. We have been going to paediatric physio, OT, speech for ages and since last year, a special needs playgroup. He may be autistic, but like anything you research he doesn't have all the symptoms just a few. We went to a clinical psychologist in Jan, but he feels he is too young still for assesment and wasn't responding to his props. In Jan he had an eeg done, which came back abnormal, then he had to stay overnight in hospital for a sleep eeg which has come back normal. Now he has to have an MRI scan done in 2 weeks to check for tumours, abnormalities etc. THis has to be done under a general anaesthetic, and blood will be taken for lots of tests including chromosomal, genetic and chemistry, haematology etc. I hope we can get some answers, because it has been a long road, and I am afraid it will be an even longer road ahead.

    If anyone needs to chat I am more than happy to as I find having a child that doesn't "fit" into the social mould very isolating as a parent......

    He is still our darling little boy though and we adore him no matter what lies ahead.

  6. The Following User Says Thank You to Goldieflora For This Useful Post:

    4aziz  (09-12-2011)

  7. #26
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    Hi Goldieflora, thanks for joining in. I know what you mean about feeling a little isolated. It's comments like "is he waving/crawling/pointing/talking yet?" .... I say not yet cheerfully, but people give you a bit of a look... I know anyway

    Back for more personals later sorry ladies. W turned 1 on Sat and is busy trying out all his new toys! (the sit and play station is a HUGE hit!)

    xx

  8. #27
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    My Son is 3 years and 5 months and was diagnosed with GDD 2 days ago. I have a psych background so Iv known from about the time he was 18 months that he was not reaching his milestones. We are very proud of all his acheivements though and although we try to teach him something new everyday , he is forever teaching us new things....
    His motor skills are fantastic (although he walked at 16 months). His eye contact is not the best. He echoes alot and uses the wodrs he knows out of context. He has improved so much socially but still does not know how to share. He has a few habits like spinning incircles and repeating odd making noises. Athough his chronological age is 3y 5m his level of understanding/ comprehension is that of an 18-20 month old.

    I would like to let parents know about the fascia fund. The government grants you $12000 for your child to be used for speech/ocuupation and phyisotherapy. You can get the form from your Deveopmental paediatrician. Im still waiting on mine but a freind has received her funding and literally does not pay a cent.

    Every mother / Father who has a child with learning difficulties and /or speacial needs is absolutley amazing.

  9. #28
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    bellalika is offline I'm trying my hardest, please don't ask for more.
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    Quote Originally Posted by 4aziz View Post
    I would like to let parents know about the fascia fund. The government grants you $12000 for your child to be used for speech/ocuupation and phyisotherapy. You can get the form from your Deveopmental paediatrician. Im still waiting on mine but a freind has received her funding and literally does not pay a cent.

    Every mother / Father who has a child with learning difficulties and /or speacial needs is absolutley amazing.
    From memory it has to be used before your child turns 8 and clear records have to be kept. Very worth it if you qualify.

  10. #29
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    Unhappy Dear Goldieflora

    [QUOTE=Goldieflora;5624469]Hello,
    . He LOVES books, but likes to look at them by himself.QUOTE]

    Wow. Reading that was like reading my mind. My son is 3 years and you have pretty much summed him. He also loves books. He loves reading (looking) it by himself. He rarely has tantrums. He is very affectionate and sweet and we love him regardless of what he can and cant do. Aalthough my son points, and used his hands to direct me as to what he wants. He has stopped clapping- something he used to do. He says words after i say them (echoing) and when frustrated babbles really really fast.

    No one understands what im going through. I feel all alone in this. I have 6 nephews on my side and on my husbands side he has 5 nephews. My son is the only one affected by GDD and t is so hard watching his nephws (aged 18 months- 9 years) reach their milestones.
    My son usually plays by himself and although he is more interactive with his peers in childcare (thanks to support from Ku) we still have a long way to go.

    I wanted to ask if blood test/ going to a genolohist is worth it? I mean, suppose it is hereditry what diff will that make. I dont want to know why he has this ... I just want it to go away.

  11. #30
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    My son was diagnosed with GDD at the start of the year, he's 3, vocabulary of about 20 words and is EXTREMELY violent.

    What are some ways other parents have stopped their kids from hitting?


 

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