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Global developmental delay

Natasha - posted on 07/16/2010 ( 17 moms have responded )

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hi my 5 year old daughter has gdd - i have been concerned for a while that she may be at the lower end of asd but the doctors wont even listen wen i mention it because she looks ppl in the eye. she is actually over friendly and doesnt take in anything i say bout strangers - a few weeks ago she walked up to a strange man and started to kiss him - it scared the hell out of me. she has real problems having her hair brushed, baths and especially having her hair washed. she has speach delay and cognitive and walks with a wide gait. recently her behaviour has been getting out of control to the point of having to put her in a quiet space to calm down for an hour before i can get any sense out of her at all. wen she throws her temper she hurts herself and others and can be quiet dangerous. is there anyone else with similar difficulties? where do i go from here?

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Laurie - posted on 07/28/2010

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Hello,
My son was diagnosed as GDD 20 years ago. He is now 23 and going to college. I first noticed that he wasn't progressing in his language... But it turned out that he had other issues too. I worked with an organization called National Academy for Child Development. You can go to their website and get lots of information. www.nacd.org

It is because of this organization that my son graduated from High School in all regular ed classes, played French horn in an award winning marching band and is now going to community college.

This organization will evaluate your daughter and then teach you a program to do with them that will address the areas of concern as well as give you a lesson plan for teaching your child at home if you wish to. I recommend them HIGHLY as I feel they helped us help our son get to where he is today.

Children on the autism spectrum are either hyper or hypo sensory and depending on the child can manifest in ways your daughter is acting.

I believe they can help you... You should look into their program. Please feel free to contact me back... I used their program for five plus years and can't say enough about them. They can help all kinds of disabilities and challenges. Maybe they can help you too!

Laurie
lmmfarris@gmail.com

Lisa - posted on 10/12/2010

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Has your daughter been tested for williams syndrome? My daughter has been clinically diagnosed with williams syndrome (genetic testing however negative) but in researching williams syndrome this sounds like similar traits that your daughter has. Hope things have improved for you.

Iridescent - posted on 07/16/2010

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A Developmental NeuroPsych. You need to actually look into what clinics are good at testing for, diagnosing and treating autism accurately in your area, and set up the appointments. Don't wait on a referral since a lot of doctors won't give it if they feel they addressed the issue already, just call and speak with someone. Ask if they treat other causes of GDD as well, just in case it isn't autism. The best clinics specialize in a variety of disorders, and test well. The waiting period is significant - 4 to 6 months usually.

17 Comments

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Sean - posted on 05/09/2014

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Hi Natasha

I hope you are still on this. My. 4 year old son has exactly the same qualities you have mentioned about your daughter and I've been fighting to get answers for years ! I would like to know have you received a more specific diagnosis for your daughter yet and what progress have you made the past few years?

User - posted on 01/23/2014

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I has one baby girl. She has a profound GDD with epileptic encephalopathy. Her age is 2yrs 10 months. Since 2months i m following to Dr givens medicine....but not seeing any improvement. Really I need help.......with urs advice n support...... please.........

Zoe - posted on 04/26/2013

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HI

Your daughter sounds alot like my daughter in many ways. you as a mum will know your daughter better than anyone else ever will. if you are worried you need to be persistant with docters and consultants if they do not listen the first time make them listen. it took me 2 years to get my daughter diagnosed, although haveing a label can be hard whats harder is not having the right support in place to support your children which is why you need to be persistant.
you will get there.x

Alison - posted on 11/04/2010

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has anyone tried mackaton signing it has helped with my 7 year old that started gdd now cause shes over 6 she is interlectuly handicaped she too doesnt like her hai washed talks to strangersthe signing can help too get your message across to her and hers to you is not even word like sign ausland but the key words and the actully use some of the ausland words other are gestures like drink it is real easy to learn too

Natasha - posted on 10/17/2010

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She has had Genetic testing but the peadiactric consultant said nothing was wrong - i have also recently discovered the same consultant has been writing letters describing me as paranoid althought the new consultant recognised problems strait away. I will check the websites etc and thankyou for all ur help

Sherry - posted on 08/07/2010

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Natasha,

You are not alone. my daughter was diagnoised with ADHD, sensory motor dsyfunction and anxiety disorder. She showed so many signs of ASD but like you the professionals at Childrens Mercy stated that her social skills were to high for her to be on the spectrum. However, she is 7 going on 8 and so socially inappropriate that i hesitate to take her public. Finally thru a friends recommendation I took her to asperger specialist and he worked with Lauren for a month before giving her a true diagnoisis of aspergers. I would seek out a specialist in private practice who will take the time to really evaluate your daughter instead of spending 2 hours with them. I would also request an evaluation through your school district. She is eligible for speech and possibly pt service even at age 5. Lastly, hang in there and read up on ASD and sensory dsyfunction. If anything you will be able to give recommendations to her teachers on the best way to educate your child. It really does not matter what label she gets but it does matter how she is treated and what her educational plan looks like.

[deleted account]

I have done a lot of research for myself and with the doctor's my son has seen and it sounds like Aspergers and/or Sensory Processing Disorder. Look these up on the internet and you may find some more resources to help you with her issues. I did not stop asking ?'s and doing my own research for my son. If a doctor didn't agree with me...I chose another then another until I found one that would listen to my concerns and get the proper testing and help. Be your child's #1 advocate and don't stop with the first opinion. You know your child the best and good luck. k.i.t.

Summer - posted on 07/28/2010

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My 3 yr old son was diagnosed with GDD. He also has many autisic like behaviours. He is also over friendly. The doctors kept telling me that he wasnt autisic, because he was friendly, making eye contact...thats was it! Those two things made all the hundred other things mean nothing?? Likely we have been seen a gentic doctor and my son has something called FGS. Its a gentic syndrome. The symptoms are similiar to autism, speech delays, low muscle tone, behaviour issues and OVERLY friendly. Basically everything my son is. Many children that has this syndrome, can be mistaken with autism. I hope you get answers. I know how hard it can be to get answers.

Donna - posted on 07/28/2010

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I guess I am very fortunate as my son was diagnosed first with Autism with learning disabilities with Global Delay. He was diagnosed when he was 5but I was concerned since he was 3 and ushed for speach therapy which he got and they since found there was more, which I was also concerned about as I work with adults who have special needs. There isn't that much help up here in the Highlands of Scotland but he attended a special school because of his behaviour, but they sorted that out and he;s hypo sensitive (I think) means he craves stimulation from touch and is so ticklish, but is a very happy wee boy and has been in main stream school for past 2 years, porgressing still very slow, not met primary one level yet but getting there. Wish you all the best with your children. Keep fighting for them and what you know, you know them better than any doctor and they only see them for a short period. Donna

Laurie - posted on 07/28/2010

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Twenty years ago it was Global Developmental Delay. When I asked the diagnostician what it meant they said they didn't really know, but that some kids grow out if it and some didn't! The definition has more than likely changed since the 1990's but the behaviors haven't. You might try looking up www.nacd.org. They are extremely helpful and will help you help your child.

Elizabeth - posted on 07/28/2010

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omg I was thinking to have my son tested for autism, but what you described here, sound exactly like my Israel, he looks ppl in the eye, but never listens, he hates getting his hair washed to the point of terror, he yells at me, (jabbers) cuz he don't really say to many words, he walks on his tippy toes, and unbalanced.. when he gets upset he scratches his face! I get so scared, he marks himself, he throws himself off the side of his crib to prove he is mad! he is seriously going to hurt himself one day, I am nervous that if he scratches his face and hurts himself, I will get in trouble, I mean you know people wont believe a child can do that to them selves, but we know better... so tell me what is GDD?

Mary - posted on 07/20/2010

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Your daughter sounds almost exactly like my 8 year old except that my 8 year old is completely non-verbal. She is cognitively about 3 years of age best we can tell, and her tantrums seem to testify to that. She has a fair grasp of concrete ideas, but not abstract ideas. She, too, has sensory integration issues (despises having her hair messed with) We've learned over the years that many chldren with Dev. Disabilities have a slew of autistic tendencies, yet they don't actually qualify for an autistic diagnosis anywhere on the spectrum.
We think the thing that will make the biggest difference in her life is finding a way to communicate. We just got a Dynavox and are working to learn how to use that. (It was actually covered by our insurance!) It could be, too, that your little girl is desperate to convey to you and others how she feels about things, her wants and needs.
My thoughts are with you and feel free to contact me anytime.

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