advice needed

Hannah - posted on 03/18/2009 ( 4 moms have responded )




my son harvey is 18 months old and has tuberous sclerosis complex, west syndrome, wolff-parkinson-white syndrome and chronic epilepsy. he can't crawl, walk, talk or feed himself. he has only just started being able to sit up for a few minutes un-aided and a few months ago he finally started showing an interest in toys.

lately he has started showing behaviours which i think might be autism. we have been told he has an 80% chance of developing this but no matter how many times i mention these to his peadiatrician and neurologist, they dont seem worried. i know something isnt right.

he rocks obsessively

he won't interact with other children

he's lost all interest in toys except a blue ball.

he shakes his head manically from side to side and cant be distracted from it

he is always in his own little world, playing with his hands infront of his face.

he has started getting upset when in a crowded, noisy or bright place

i think his docs think it is all to do with his other conditions but im not too sure. what do you think? i really need some advice xxx


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Hannah - posted on 06/06/2009




Hi ladies, thanks for your comments. as harvey is quite severely disabled he has a close team of specialists who monitor him all the time. he goes to a pre-school for children with disabilities and special needs and they have been observing him, he is supposed to be assessed for autism when he is 2 but they have booked us in for one next month as they think he has autism (he is now 20 months). he has a very short attention span and can be hyperactive because of the tumours on his brain, which is what may cause the autism. i have come to the conclusion that he is more than likely autistic and it is something that i can deal with as he is disabled as well. thanks for all your advice and i'll let you know how the assessment goes xxx

Lynne - posted on 03/20/2009




Hiya, I think the symptoms sound very like classic symptoms of autism (my son demonstrated most of them!); but I don't have any knowledge of the other conditions your son has. I think Leslie is exactly right, no-one knows your child better than you - I think you should fight for another opinion. Good luck!

Leslie - posted on 03/18/2009




If your unsatisfied and have your Mommies tummy (what I call my sixth sense) I would go get a second opinion because I have always felt I knew my daughter better then anyone else. Also my mommies tummy has never been wrong yet!!

Kelly - posted on 03/18/2009




hi i dont know about children but i work with adults with autism  and they have the same symptoms as you have described with your little one. autism varies from person to person some have a sever form while others are borderlined.there is a triad of imparments which is three things that doctors or others describe for auttism which is relationship, communiction.they dont communicate the way we do or dont communicate at all theye have trouble understanding what is being said. and imagination they have little or no imagination  have you mentioned it to your health visitor as they can get you refered to a peadatrtion who can do test to see. there is also alot on the internet. dont worry about it to much as there are many people with autism that live there life fully and have jobs. i know your baby has other problems and i hope you get some answers you are looking for all the best.

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