Help needed

[mum2rugrats]

I'm going through a fair bit with my 5 year old son at the moment, it basically started at the age of 18 months old he started having 'funny turns' it was like his back was having a spasm and he would scream in pain and be unable to move whilst it was happening ,after a lot of hospital appointments, a ECG and a MRI we was told it was looking like he had paraxyamol dyskinesia and it was something he would grow out of, he was referred for blocks of speech therapy due to poor speech and also was having to wear pedro boots due to tiptoe walking, from the age of 3/4 he did seem to improve and the back spasms subsided, although he was a little clumsy.For the past year now he has changed so much, he is constantly falling over and hurting himself on two occasions he has fallen from the top of the stairs top to bottom and hurt himself badly which scares me, his behaviour is what I would call out of control he screams and screeches so loudly over the smallest thing the tantrums are so hard. He has also started biting his brothers and he pokes his ears so badly he makes them bleed(I have got a doctor to check just in case it was a infection) his school is very good and the teacher called me in a couple of months ago she is concerned about his development his fine motor skills are poor he can't grip a pencil, write properly or use scissors. He also struggles to follow instructions she said its like he doesn't digest information and also he is very clumsy, she has put him forward for special needs referral, this prompted me to take him to gp and we have been referred to community paediatric clinic the appointment is this coming Wednesday but I have a feeling things will be very dragged out. On first thoughts I thought it was possible he could have dyspraxia but now I'm not sure. Can anyone tell me what to expect with the appointment many thanks xxxx

 

[mummy2o]

How's his social skills? In some regards he sounds similar to my son, although he's pretty placid but he can't hold a pencil, cut with scissors (I did try and teach him although but he then tried putting his fingers in between the blades!) limited speech, walks on tiptoe when excited only and at 5 could only understand basic instructions.

What stuff does he get upset about? I was just wondering if autism has crossed your mind?

When my son first went to his paediatrician he was 2 or 3 so really early and basically we got asked all about what he was like, what he enjoyed, family, etc, etc. Nothing really scary at all. He monitored him and made him do some simple tasks. I wouldn't worry much. Just remember your doing it for him and giving him the post opportunity in life and sooner they can work out what's up the sooner you can improve his life.

 

[mum2rugrats]

socially he goes from one extreme to the other, if he sees friends in the street and they say hiya to him he will hide behind me and not talk but im not sure if he is just shy, if we have a friend round his very in their face excitable screaming and giggling at them he has mentioned to me his friends say he is naughty but his teacher has never gave me reason to be concerned about behaviour he also can take dislikes to people one of his old nursery teachers he still hides from if we see her and apparently he used to scream if she wanted to change his nappy, He gets upset about the slightest thing he only likes certain fooods and if I dont give him them he will have a tantrum or if doesnt want to wear shoes or clothes I put out, if he cant go in front of bath or if he has got the knive and fork without the silver end etc. I hhave read about autism but I wasnt too sure

 

[mummy2o]

Could be autism as although they don't typically have friends I was thinking back to when I was a child and I had a few friends. Could be ADHD. In fact it could be a range of things. Hopefully you'll get some answers soon. Keep us updated

 

[mum2rugrats]

thank you I certainly will do

 

[mum2rugrats]

Just a update had our appointment this morning, she went through day to day life with Lewis and observed him playing, he has got the play of a 2 and half year old she said its very immature, she also thinks he has autism possibly ADHD aswell, we are now on waiting list for assessment which she has said can take a while, we've been giving some forms to fill in at home and also some to give the school to fill in xx

 

[mummy2o]

Seems I hit the nail on the head. The assessments do take a while, but since he's in school he will get a little boost up to the top of the list (in South Gloucestershire at least) due to pre-schoolers not being as important.

 

[mum2rugrats]

also I have a friend that used to help out at the school that Lewis attends, I spoke to her earlier and told her outcome she seemed really shocked and said shes never noticed anything whenever she has seen him round school, this has left me thinking surely if he had autism the school would kind of know what they are looking for? sorry for rambling but I actually feel more in limbo now then what I did xx

 

[mummy2o]

I was doing some research about autism today. Basically many teachers and doctors are over worked and miss key signs. Also each child, even with autism, is different. Some have eye contact, some have none, some hug strangers, some run a mile from anyone, its not always black and white as there is a massive grey area. I'm sure once you get a cup of tea, and get over the shock (there will be several, especially once you get the diagnosis even if you already have an idea what it is) you'll get the everything in place to help your son develop into an even more amazing little boy.

 

[mum2rugrats]

Yeah I suppose your right plus with it been his first year maybe they concentrate more on them settling in, from what I've learned today Lewis only has good eye contact with me because I'm his mum he couldn't hold it with the doctor, Lewis is shy and scared of strangers prefers adults to children and he kisses a lot of them and asks if he can stay at their house etc she told me today that this can also be autism. thank you for all your help I've not really spoke to anyone about it properly xx

 

[mum2rugrats]

Lewis had his initial physiotherapy appt today, she did lots of things with him she didn't think he was hypermobile so that wasn't causing the falls, she thinks he has dyspraxia so my first thoughts were spot on, guess it's just a case of now waiting for ados assessment to see what happens

 

[Ninagrrl]

It's just a symptom and there would be an underlying cause, but his falling could be caused by vertigo. There are a lot of things that can cause this but it can cause balance problems, especially in higher places. My son has hypotonia (low muscle tone) and so they always say that his balance issues are due to that but I think he also has vertigo cause he sometimes gets sick to his stomach, dizzy, sways when walking and can't walk in straight lines and it seems to happen in episodes which is not consistent with hypotonia. Some days his balance is spot on and others he can't seem to stop tripping and falling. I won't rent a house with stairs because I'd be afraid he'd hurt himself on them.

 

[mummy2o]

I'm glad they are finding possible cause. I hope the assessment goes well. Don't be afraid if he has dyspraxia and autism as sometimes the two go in hand in hand. There is very grey area in learning difficulties and many can over lap. I'm now think my son is also dyslexic on top of his autism, which is fine but its going to be a struggle to prove as people like blaming the autism for everything.