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Old 28 May 14, 01:09 PM  
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So tough for you. Sending hugs. Follow your gut instinct, mums are usually on the right lines.
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Old 28 May 14, 01:25 PM  
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Hi there,
You are bound to worry, it's your job, being a mum.
My dd has ASD,mild Cerebal Palsy, learning difficulties and Dyspraxia, so I know a thing or two about challenging times with our lovely children. My dd had a one off (well up to now anway) seizure around 7 years ago now it was the most scariest thing ever as she didn't know who I was or any family member at first. Most of her problems come from being born 3 months prem and 27 bleeds in her brain. Having said all of this like another dibber if you met her you wouldn't know unless you got in to a "sort of" conversation...
There are traits I see in your DS that my dd has shown. She slept brilliantly as a baby but from around 18 months that changed even now at 19 we struggle at times but I'm so used to having little sleep that I'm ok now.
I feel you would be better speaking to a paediatrician who can answer your questions or at least listen even if they don't have the answers. You will find though that many a time you feel like your banging your head on a brick wall, it took me around 12/14yrs to get my dd ASD diagnosed and I am not saying he has as its a very long drawn out affair that needs assessments and lots of them through different medical experts.
Just wanted you to know you are not alone there are many of us dibbers on here face challenging children daily. I send you big hugs and feel free to PM if you want to rant or an ear to listen from someone who understands. He is still your gorgeous little boy he was before but just throwing you a curve ball or two! Xx

Edited at 07:28 PM.
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Old 28 May 14, 03:59 PM  
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i would be extremely careful about taking and even asking for advice and information from others who do not have first hand experience of being around your child

i am so very sorry to hear that your child has been so unwell and that you have been and are going through such a worrying time, i would suggest that your first port of call be the GP to ask for a referral to a paediatrician so you can seek further advice

it is unfair for people to suggest autism to you, this is a long drawn out diagnostic process which impacts on that child for life, nobody can take a quick glance at a child and says "oh yes he/ she is autistic" the triads of impairment would all need to be present for a diagnosis and then a professional would work with your child with speech and language being involved and also observations made to see how the child interacts with other children for many, many months before even considering any such diagnosis

each child is individual and it is impossible for another person to say oh that sounds like my child who is autistic, autism is not easily diagnosed at such a young age because a child is still developing those vital social interaction and communication skills so i do think it's very wrong and worrying for somebody to suggest this to you, they could not possibly know this, even the most experienced professional would struggle at such a young age when your child is still developing to give you a answer to this

i truly am saddened and indeed shocked to hear how quickly people can equate not sleeping, running about and staring at nothing in particular can quickly be interpreted to "perhaps the child has autism"

trusting my own instinct, seeking professional help and not comparing my child with others would be my only advice

Edited at 04:01 PM.
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Old 28 May 14, 04:15 PM  
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Our ds was diagnosed at 5 and I also had concerns when he was very young, and said as much to the HV, however he was presenting with a lot more complex behaviours than those you have mentioned. Even then the HV wasn't overly keen to refer us for assessments because she said its difficult to tell until the child starts nursery and school when social interaction, play etc... Become a part of the daily routine. That is when you really see the effect the triad of impairments have upon the child. In our case,ds nursery teacher had concerns straight away and made a referral for assessment, then the HV suddenly took me seriously (even though my background was in psychology she still thought I was over reacting). I would read up on it, because what you have described doesn't fit with ASD. I think you also need to look at the cause of these seizures and get the GP to investigate this, speak to your HV too about your concerns and worries, but most of all try not to let your stress or worry about it all be picked up by your ds, take care and best wishes to you all xxx
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Old 28 May 14, 04:27 PM  
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Originally Posted by mazz View Post
i would be extremely careful about taking and even asking for advice and information from others who do not have first hand experience of being around your child

i am so very sorry to hear that your child has been so unwell and that you have been and are going through such a worrying time, i would suggest that your first port of call be the GP to ask for a referral to a paediatrician so you can seek further advice

it is unfair for people to suggest autism to you, this is a long drawn out diagnostic process which impacts on that child for life, nobody can take a quick glance at a child and says "oh yes he/ she is autistic" the triads of impairment would all need to be present for a diagnosis and then a professional would work with your child with speech and language being involved and also observations made to see how the child interacts with other children for many, many months before even considering any such diagnosis

each child is individual and it is impossible for another person to say oh that sounds like my child who is autistic, autism is not easily diagnosed at such a young age because a child is still developing those vital social interaction and communication skills so i do think it's very wrong and worrying for somebody to suggest this to you, they could not possibly know this, even the most experienced professional would struggle at such a young age when your child is still developing to give you a answer to this

i truly am saddened and indeed shocked to hear how quickly people can equate not sleeping, running about and staring at nothing in particular can quickly be interpreted to "perhaps the child has autism"

trusting my own instinct, seeking professional help and not comparing my child with others would be my only advice
Brilliant post and excellent advice.
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Old 28 May 14, 05:20 PM  
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Originally Posted by Hallowishes View Post
Thankyou all so much for your replies, I wish I could thank you all individually. I'll try and answer some things if I remember! After his seizure the doctors at the hospital think he'd had an ear infection that raised his temperature so high the only way his body could cope was to have the seizure and shut down. When they started to get oxygen into him he started to come round. They said it takes a good 24hrs for the brain to get everything back to normal and function properly and they gave him antibiotics, within 2 days he was really unwell and started with a rash, he was diagnosed with hand, foot and mouth, (we worked out the incubation and it must have been at the airport or on the plane that he picked it up) 2 days after that he got worse with very red cheeks and he was also diagnosed with 5th disease (we call it slapped cheek syndrome) they also thought he might be allergic to the amoxicillin as well. He had terrible diarrhoea, 3 different meds and was back & forth to the doctors. To have had all 3 happen to him in the space of a week he must be a fighter. We were so happy to get him home and went straight to the doctors who checked him over and said his ears were clear and gave him the ok but to keep him an eye on him. The doctors in the US were brilliant, they said he's at risk of seizures with every temperature till the age of 5. We aren't sure if all this had an effect on him or not. He has days where he's running around laughing and playing and seems like a normal healthy 2 year old. Then there's the days where you could hear a pin drop and its like he's somewhere else, so vacant. When I was pregnant with him we were told we had a 1 in 70 chance he would be Down syndrome, it didn't matter one bit, I didn't have the amnio as we were more than prepared to have him no matter what. He wasn't downs and they could tell us now he's autistic, he's never going to speak or he's got a plant growing out of his head, nothing would change how we feel about him and whatever comes of it we will give him 150% love and support for the rest of his life. We just don't want him to suffer. The health visitor said to ignore his running around as he might want the attention but I can't because he's getting really hot and his heart is beating like its going to pop out. He calms down when we go in and then starts running again when we leave the room. I've tried
leaving him, books to read, even bought a lava lamp! This smiling and looking at something freaks us out, it's like he can see something. We thought he might be sleep walking but he'll respond to us so he can't be. We're doing the suggestions of the speech therapist but to no avail yet, we've just had a letter to make an apt. with them for assessment and I think the health visitor is referring him to a paediatrician, she's coming to see him next week. We're going to take him to the GP hopefully today to see if he's got an ear infection and to tell them everything. Thanks again everyone, I'll keep you posted. xx
Your a brilliant mum and are going through all the right procedures.He needs to see a Paediatician and then you will be on the right road to find out if there is anything wrong.Our daughter was 2 when we realized something wasnt quite right.We thought it was her hearing but turned out to be Aspergers.No 2 children are the same and this is why he needs to be seen by a Paediatician and it takes a fair time of watching, observing your little one and listening to what you can tell them.So wright all your concerns down and put these to the Paediatician,What ever the out come it,ll be ok cos hes got you fighting his cornerThinking of you x
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Old 28 May 14, 06:13 PM  
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I have no advice but I just wanted to say that the love you have for your son shines through everything you wrote.

I wish you lots of luck in getting some answers,

xx
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Old 28 May 14, 06:16 PM  
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Originally Posted by Merligan View Post
I have no advice but I just wanted to say that the love you have for your son shines through everything you wrote.

I wish you lots of luck in getting some answers,

xx
What a lovely compliment x
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Old 28 May 14, 06:23 PM  
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Originally Posted by mazz View Post
i would be extremely careful about taking and even asking for advice and information from others who do not have first hand experience of being around your child

i am so very sorry to hear that your child has been so unwell and that you have been and are going through such a worrying time, i would suggest that your first port of call be the GP to ask for a referral to a paediatrician so you can seek further advice

it is unfair for people to suggest autism to you, this is a long drawn out diagnostic process which impacts on that child for life, nobody can take a quick glance at a child and says "oh yes he/ she is autistic" the triads of impairment would all need to be present for a diagnosis and then a professional would work with your child with speech and language being involved and also observations made to see how the child interacts with other children for many, many months before even considering any such diagnosis

each child is individual and it is impossible for another person to say oh that sounds like my child who is autistic, autism is not easily diagnosed at such a young age because a child is still developing those vital social interaction and communication skills so i do think it's very wrong and worrying for somebody to suggest this to you, they could not possibly know this, even the most experienced professional would struggle at such a young age when your child is still developing to give you a answer to this

i truly am saddened and indeed shocked to hear how quickly people can equate not sleeping, running about and staring at nothing in particular can quickly be interpreted to "perhaps the child has autism"

trusting my own instinct, seeking professional help and not comparing my child with others would be my only advice


Very true Marie


I would trust your own instincts and take him to a GP or a 2nd tier assessor, your HV or GP can refer for this.
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Old 29 May 14, 11:28 AM  
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I have yet to met one child that ticks the same boxes another child ticks. All children are different even those with the same disability. Mothers intuition is the best and you should go with your feelings and ask for a second opinion if your GP brushes them aside. My GP did this with my dd but I kept at it as I just knew something was not right. Sadly had to do this many times through out the years.
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