OMG its just hit me

[alfiemama]

I haven't been on here for ages but finally after nearly 2 years I have just been given a full and final diagnosis for Alfie. He has autistic spectrum disorder.

Ive always known, but to be sat in the room and hear the verdict, well its just really hit me, doesn't help I am 7 months pregnant and hormonal.

I am a little worried though now as she wants him tested for fragile x, she doesn't think he has the full blown but could be somewhere in the middle.

Do they test routinely for fragile x? What are your thoughts on this.

Sorry for waffling think I'm still in shock.

Some areas routinely test for fragile x and it certainly meets best practice guidelines to test, yes.

agree with sancti. some areas test all kids dx'd, as it's an easy investigation , just done by blood test, so don't read too much into it. congrats on the Pg btw.

Oh gawed yes congrats on baby AM

lovely news

FWIW they kept saying tehy'd test us for fragile X and never bothering and I wish they would as ds3 certainly has some atypical facial features.

Thanks TotalChaos and Sancti.

I thought this could be the case, but just freaked myself out by looking at the symptoms.

Alfie has Flat footedness, Hyper mobility, Large testes and limited eye contact. He also hand flaps and has cluttered speech.

The other factor I cant help but think about is that my dad has recently been diagnosed with Bi-Polar and has been having memory tests. When I looked at the symptoms it say men over 40 have memory problems

If he did have fragile x why would it be worse than asd I wonder?

I know its silly Sancti and maybe I have been in denial a bit, but the thought of one day when he has a family, what if he has a child with special needs, how will he cope, but then I suppose that could happen with autism. I think reality has just set in thats all.

Also I think I was just in shock, when she was talking about x and y chromosomes.

It will hit you, it has done twice now for me. Let yourself go through it but think to yourself he's still the same person he was before you heard that diagnosis x

sancti - I know if you have a child/sibling with ASD then that increases the risk of further children with ASD, but I guess something like fragile X might feel more daunting in terms of the genetics of it?

ASD is more common in families where members have bipolar and other mental illnesses so again, try not to read too much into it.

Thanks Glitterknickaz.
I know and I wouldnt change him for the world. Its just been a long rough ride, like I know its been for others.

Sorry that came acroos as too straight! was meant more in a 'your child is still your child whatever ' way.

Thanks Totalchaos, it probably is no different really, I mean autism has to come from somewhere, I always thought the fertility drug, Clomid was to blame, maybe just my way of dealing with it.

When I was explaining to my parents about it all, I left out the fragile x with regards to my dad, as I think his paranoia would set in and he would be like "why me, Ive given it to him", etc etc. I'm just worried if it is that, how other family, who will have to be tested will feel.

infertility meds and ASD

Definiely a link bgetween bi polar (and other depressions) and ASD by the eway, well documented

alfie that's how I got myself through it x

Thanks Sancti, good link thanks.
I spoke to our child physchologist about dads Bi-Polar and she said the Mania side didnt present until children are in there teens and didnt think Alfie would have this. But I have read there is a link to depression with children/Adults with asd.

Did you have Clomid Glitterknickaz?

I always thought if it was the Clomid, he wouldnt be here without it.

There is Alfie but ot could well be caused by the ASD- remembering that most adults diagnosed now will ahve had very little understanding as children so it could be that simple.

'I always thought if it was the Clomid, he wouldnt be here without it.

exactly.

And he is far better off here with a loving Mum isn;t he?

Oh god yes Sancti (thanks). All the way along it has become apparent that he has other issues. First was the autism, then we were told Dyspraxia, then hyper mobility, then he had absences and had to have brain scans and now this Fragile X (which sounds scary) has been thrown into the equation.

I so wish I could drink tonight, I know, I know, I'm just having a hormonal feel sorry for me day, I will be back on form tomorrow, I hope.

DS3 had his EEG today, so I know a bit of how you feel- course, he didn;t have a single ansence during the scan......

The first thing our paed did when he met DD was send off bloods for fragile x.

I think Fragile X seems worse because it's not very well known and then you google it and read words like 'mental retardation' etc

I had no idea about the bipolar/ASD link. My sister is bipolar.

Hope you are feeling more like it soon. It's hard but give yourself time.

Same with Alfie Sancti, did he have the sleep induced one? Alfie had two and they came back inconclusive, paed said we should now put it down to the asd and overload.

There horrid though, so know you've also had a rough day.

Thanks Spinkle. I think you learn something new about Asd every day.
Thanks Lougle, maybe its standard procedure in your area.

Ah Alfie, Dh did this trip thankfully- breastfeeding your LO gets you some handy breaks sometimes!

Results in 3 weeks apaprenlty.

not sleep induced, they did lots of strobes and TV and making him breathe quickly etc. If it's strobes we're stuffed as DH runs a disco and stage lighting conpany from home....

fingers crossed its not the strobes Sancti, does your son have asd? I'm sorry if you said, but got preg mush brain.
Glad you didnt have to go, how old is your lo?