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Old 29 May 14, 12:16 PM  
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#21
married2mm
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Originally Posted by mainecoon lover View Post
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.
I quite agree.

The same with adults also.

I had 2 friends with breast cancer-diagnosed at practically the same time.
They had totally different symptoms,and had sadly opposite outcomes.
We are all unique-and all require an individual approach.
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Old 29 May 14, 01:12 PM  
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honeybun1989
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No advice, I just wanted to wish you well in finding the answers xx
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Old 29 May 14, 02:05 PM  
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Hi everyone, just wanted to say thank you for all your replies, and also that at no point has anyone said he has autism or that it sounds like he has autism, the only comment we've had is from my husbands friend who has an autistic son and was trying to help with what we're going through at night, he has been through the same symptoms and said his son has melatonin now. I'm sure that was after a lengthy diagnosis and he was just trying to help with what we can try at night before our son gets to that stage. I don't feel myself that anyone has equated his sleep patterns to autism. I would never expect someone to diagnose him from what I've said or posted, I wanted to come on here for any advice with what we can do or if anyone has been through anything similar to us as we've run out of ideas and I'll always value any dibbers help or advice. We know that no children are the same and that my son might not be the same as someone elses but he might exhibit similar symptoms and thats all we're asking. We are not asking for a dibbers diagnosis, just if anyone who has been through similar experiences can they advise. As I've said before it wouldn't matter at all if he was diagnosed with anything as its not about us its about helping him and making sure he's ok. Myself and hubby have welcomed the comments, very kind and very helpful, it's made us feel like a problem shared is a problem halved.
The latest update is that we took him to the GP yesterday as we were worried about his ears, he ended up seeing a locum who didn't really listen much, but his ears were ok apart from wax, we had everything written down and she said his regressed speech is one thing she wants to see about so she's referring him to a paediatrician which is good, he is constantly twisting his fingers around the corners of a blanket he has become very attached to and will even do it with a booster seat strap or my top! he likes to have things a certain way or 'lined up' sometimes and if you move them he puts them back where he wanted them but again all this and his sleep could just be a toddler finding his way! When I look back at what DS1 did sometimes its a wonder he wasn't seen! He used to walk to school along a line in the pavement and if he walked on it wrong he'd have to start all over again and we'd need to get to school! He had lots of wierd mannerisms and is a normal 12 year old boy now so who knows, but he didn't have seizures and was talking a lot so I can't compare. The Health Visitor is coming next week to see him again, and we've got another assessment with the speech therapist. He spent over 3 hours running around his cot last night back and forth till after 4am this morning, its hard to watch and looks quite disturbing sometimes as its almost like he's being told to get up and run by something only he can see and smile at. I tried leaving him and tried staying with him, it's starting to take its toll as I'm pretty good with sleepless nights but I'm quite exhausted today! He's having his nap now and then tonight it'll start all over again. Bless him it must be really wearing him out. Thanks again everyone, we do appreciate all your comments xx
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Old 29 May 14, 02:07 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
Just wanted to thank you for your lovely post, its very kind of you to say thanks xx
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Old 29 May 14, 06:03 PM  
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Originally Posted by Hallowishes View Post
Hi everyone, just wanted to say thank you for all your replies, and also that at no point has anyone said he has autism or that it sounds like he has autism, the only comment we've had is from my husbands friend who has an autistic son and was trying to help with what we're going through at night, he has been through the same symptoms and said his son has melatonin now. I'm sure that was after a lengthy diagnosis and he was just trying to help with what we can try at night before our son gets to that stage. I don't feel myself that anyone has equated his sleep patterns to autism. I would never expect someone to diagnose him from what I've said or posted, I wanted to come on here for any advice with what we can do or if anyone has been through anything similar to us as we've run out of ideas and I'll always value any dibbers help or advice. We know that no children are the same and that my son might not be the same as someone elses but he might exhibit similar symptoms and thats all we're asking. We are not asking for a dibbers diagnosis, just if anyone who has been through similar experiences can they advise. As I've said before it wouldn't matter at all if he was diagnosed with anything as its not about us its about helping him and making sure he's ok. Myself and hubby have welcomed the comments, very kind and very helpful, it's made us feel like a problem shared is a problem halved.
The latest update is that we took him to the GP yesterday as we were worried about his ears, he ended up seeing a locum who didn't really listen much, but his ears were ok apart from wax, we had everything written down and she said his regressed speech is one thing she wants to see about so she's referring him to a paediatrician which is good, he is constantly twisting his fingers around the corners of a blanket he has become very attached to and will even do it with a booster seat strap or my top! he likes to have things a certain way or 'lined up' sometimes and if you move them he puts them back where he wanted them but again all this and his sleep could just be a toddler finding his way! When I look back at what DS1 did sometimes its a wonder he wasn't seen! He used to walk to school along a line in the pavement and if he walked on it wrong he'd have to start all over again and we'd need to get to school! He had lots of wierd mannerisms and is a normal 12 year old boy now so who knows, but he didn't have seizures and was talking a lot so I can't compare. The Health Visitor is coming next week to see him again, and we've got another assessment with the speech therapist. He spent over 3 hours running around his cot last night back and forth till after 4am this morning, its hard to watch and looks quite disturbing sometimes as its almost like he's being told to get up and run by something only he can see and smile at. I tried leaving him and tried staying with him, it's starting to take its toll as I'm pretty good with sleepless nights but I'm quite exhausted today! He's having his nap now and then tonight it'll start all over again. Bless him it must be really wearing him out. Thanks again everyone, we do appreciate all your comments xx
That's a great start, getting referred has got to be the way forward for you. What I would suggest in the mean time is to start writing things down and keeping a diary of his different behaviours and anything you feel is new or out of character for him. This will help the professionals and yourself when getting asked questions once you get in the system. You may find a pattern emerging from your diary which again could be very useful in the long term.

As you say this could all come to nothing yet and no diagnosis needed but as a mum you know your child best and you have to follow your gut instinct and it's better to see someone now than worrying and it takes so long to get in the system the earlier you flag things up the better.

The very best of luck and feel free to sound off at us and get things of your chest anytime, we are always here and often you feel better for just writing it down and discussing things. Feel free to PM if you want anytime.

You take care, Lisa x
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Old 29 May 14, 06:41 PM  
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Hi there I remember you saying about your frightening holiday with your little one and his seizure. As others have said its best just to see the doctors and get a proper check up done. Having to manage on a few hours sleep isnt easy, try and take care of yourself as well. I really do hope you get some answers soon, sending you hugs xx

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Old 29 May 14, 07:03 PM  
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I presume you have tried all the usual, calm, bath, milk, bed kind of things? My little one would only sleep through for a while if there was speech radio on, so we set a radio to the world service and left it playing? Then moved onto story CD's?

It does sound as thought the running at night needs more than that sort of tactic, but maybe worth going back to basics?
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Old 29 May 14, 07:46 PM  
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Is there anything in his bedroom that could be stressing him or keeping him awake? It might be worth taking any pictures down etc... Because something that might seem rather innocuous to us might be over stimulating for him. Just a thought?
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Old 30 May 14, 09:32 AM  
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I am pleased you GP is referring you. Write a list of all your concerns to take with you. I know you have them in your head to ask but appointments can be over welding and you may come away think oh I forgot to ask that. This is a very distressful time for you and I can assure you I bet all of us have questioned people over what our kids are doing to others with children to get answers, I have. Please keep us updated
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Old 30 May 14, 10:12 AM  
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My stepson wouldn't sleep on his own - he had to have someone with him to fall asleep and if he woke in the night alone he'd wake us and someone would have to stay with him until he was asleep (and OH would end up going back sleep in his room). This went on until he was about 7.
He also didn't talk until he was 4 and he could be very particular with keeping his hands clean.
He is 17 now and is a typical teen - although he's probably not moody enough :-)
Try not to worry and imagine the worst.
I also had 'slap face disease' when I was about 4/5. I remember I could be around children but not adults. I don't remember feeling that unwell with it - I had bright red cheeks tho.
Good luck with the referral - it's a great idea to write things down.
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