does this sound like autism at all or am i just being paranoid because of my 3 month old sons heart problem

[mummyofthomas]

hi all, sorry if i sound ignorant but i am very new to all this my 3 month old son has hypoplastic left heart syndrome baically only half his heart works, this was not picked up on any scans etc so a real shock which to be honest is still very raw!. i am now worrying about my 22 month old son as he is a little slow in speech but since getting rid of his dummy is coming on very well, the main thing is that he has always loved to build many towers of bricks and does line things up like placemats or toys and he also does a hand flapping thing, it kind of looks like he is doing the macaraner dance(spelling!) he did stop doing this for a while but has started doing it again. my worry is that because my second son has such a serious birth defect could there be any genetic link between that and my first son, or are these things normal for a 22 month old? i should add that my son has his 2nd operation planned for 2 weeks time so my paranoid brain may be working on overdrive and I dare not mention it to anyone as we have enough on our plates at the moment! would be so grateful of anyones experiences/opinions. thank you.

mummyofthomas From what you say it could be something or nothing, but I'm afraid I would ask for a referral to a Developmental Paediatrician based on the things you describe, if for nothing else but to put my mind at rest because this is clearly a concern for you. IF there is something going on early intervention is key.

I'm so sorry about your baby. It sounds very rough for you atm. I wish you strength for the coming weeks.

mummyofthomas. You are suffering from PAT. PAT is pre-appointment tension and it comes to visit at these difficult times making you worry about all sorts.

I wonder whether your older son is also picking up on your tension around your son's surgery. My dd has heart problems and the age difference between her and my next oldest child is very similar to that of yours. Because I had to spend quite sometime away from him whilst dd was in hospital he regressed quite significantly. He also developed some OCD type traits which he still has 16 years later.

If you can I would put your worries about your ds1 aside just for a little while. You have a lot to cope with, get through this surgery and settled at home again and see if your son settles down again too. If not and you are still worried see about a referral then. I do think when you have a lot to deal with you can get to a point when 'you can't see the wood for the trees' and you start worrying about everything.

Do you post on the Heartline message board? If not and you need some support through your child's surgery then do pop over.

Hello mummyofthomas - best wishes for the forthcoming op for your son. I would be a little more relaxed than star - I would see building/lining/flapping as concerning only if occurring with poor speech, lack of pointing, lack of pretend play. Mention to your HV now by all means (as chances are she would just say wait and see now for a few months anyway, and you might as well do the waiting and seeing at a time when you aren't worried!)

this test (the CHAT test) shows the sort of thing HVs would look for around 18 months:-

www.paains.org.uk/Autism/chat.htm

It's not a diagnostic test or anything, just flags up kids who may be at risk of a communication problem of some sort.

We get a lot of PAT in our house . Your Ds is still young and hand flapping and linning things up can be a normal part of developement in children of this age, or could be early signs. I would try and get him on video and speak to HV, she will more than likely say to wait for his 2.5year check, but atleast its then noted down.
Good luck with your LOs op, hope its goes well

HI there, thank you all so much for your kind messages. Never heard of PAT before but I believe I am definitely suffering from it at the moment. I'm really struggling to tell anyone how I feel about my son's surgery as I feel that I just have to be positive ALL the time My dh is sooooooooooo positive which is great and in my head I am too as I know the risks for this surgery are much better than the 1st op he had but in my heart he is my baby boy and my heart just sinks everytime I think about it
Cleverlyconcealed I have tried to get onto heartline but they won't accept me and I have emailed them but no response, do you know how I can get on their or any other sites that are available, this is all very knew to me as not diagnosed while pregnant and as I say could really do with some support from people who know what I am going through.
thank you for the site totalchoas, I have looked on there and he does do most of the things he is supposed to so maybe as people have said it is my stress to do with my second son that is making me more worried about my first.
I havent mentioned anything to my health visitor but she said she will check him out a 2 years so if I am still concerned then I will talk to her about my worries.
The video idea is a good one as children have a wonderful knack of not doing anything you want them to when other people are around
I am having real trouble sleeping at the moment aswell for obvious reasons. does anyone know if there is anything a dr can do for me in this situation or do you think this would be a bad idea?
thank you all so much again for your support. is soooo nice to talk freely about how I truely feel.

mummytothomas - register again and e-mail me to let me know you have (and tell me what user name you've used). I moderate on there but don't have the facility to accept you. I'll mail the person who does - you sound like you really need the support.

My email is j a x p 6 3 at h o t m a i l dot com. Leave out the spaces and but in the proper ands and dots

thank you I have followed your advice and sent you an email with my username. could you let me know if you receive it so I know I have done the address properly. thank you again.

OK - I've mailed you back and mailed the admin team. Hopefully they can get you access as soon as possible and I'll see you there soon.

Also have you had a look at Little Hearts Matter? They have a forum too - I used to be a member there but don't post very often.

Try now - I've mailed you a temp password.

thank you so much, have just tried it now and works great. just need to get my head round how the forums work, i am rubbish with technology will try to post soon,so hopefully see you on there sometime, thank you so much again, even with all the support of my family and friends my whole situation can make me feel like the loneliest person in the world at times.

Glad you made it - I'll see you there (probably after the hell that is the tombola at the school summer fair). If you find the who's who section and post an 'I'm new' everyone will pop on to introduce themselves. That bit isn't public so feel free to offload.

I do feel for you, my dd's heart problem wasn't picked on scan (but couldn't be) and it was a massive shock. Bit of a steep learning curve and makes you question things you took for granted before - hence I think some of your worries about your elder child.