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DD1 is seeing the paediatrician next week

(58 Posts)
Socci Wed 01-Dec-04 23:02:28

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SantaFio2 Thu 02-Dec-04 06:56:35

my understanding is, and correct me if i am wrong, that to usually get a diagnosis of autism it is usual to have a multi-disciplinary assessment first. If would assume you are seeing the development paed who will observe and do some development tests with your dd. He may even hint or give the diagnosis of autism there and then but your dd would need an assessment first I would imagine.

has she had any other tests at all? Because they usually do other tests just to make sure nothing else is going on iykwim

jakbrown Thu 02-Dec-04 08:41:08

Socci, my DD was diagnosed by the community paediatrician with huge input from her SALT. The paed saw her twice and the SALT about 20 times before the made a dx. The SALT knew the minute she met her that she was probably autistic but they do 'wait and see' with little ones. I would go prepared with detailed notes on the things your DD has difficulty with (so you can refer to them). They to take the opinion of the parents very seriously. Go back to very early development as they will want to know everything, from birth onwards. I know you feel as if you want a dx, but be prepared to feel quite emotional if the paed confirms that your DD may be on the spectrum. Good luck!!

Socci Thu 02-Dec-04 09:13:35

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jakbrown Thu 02-Dec-04 09:46:41

Socci, they may want to run tests- DD had everything- just to rule everything out. This is another emotional rollercoaster. Sorry to be 'voice of doom', just know I wasn't at all prepared for how emotional it would all be.

coppertop Thu 02-Dec-04 09:59:48

We didn't get any extra medical tests but I wonder if this is because we have boys rather than girls? Both Paeds (ds1 and ds2 saw different ones) have commented on the head size of the boys and commented that there seems to be a link between large heads and ASD's. Ds1's hat is an 8-10yrs size while ds2 has a 3-4yrs size.

After our initial visit to the Paed with ds1 she asked us what we thought the problem was. When we said autism she said she was pretty sure that it was but that he'd still need the full assessment. At the end of ds2's visit the Paed said that a full assessment would be done but that he thought that ds2 was on the spectrum. I suppose the 2nd time around they know that you know what to expect and are that giving false hope is pointless.

I agree with JB though. No matter how much you are expecting the dx and are even hoping to get one it is still a horrible feeling when you finally get the news.

maddiemo Thu 02-Dec-04 10:05:36

Socci, it was 15 months from us being referred to the paed to get to diagnosis. We were told this was fast. We were told that at least two members of the multi disciplinary had to be in complete agreement over diagnosis whether it would be PDD, autism, AS or anything else.
You should have tests to rule out any other conditions, ask for them when you see the paed.
Would the ABA team not accept an interim diagnosis of social communication difficulties?

maddiemo Thu 02-Dec-04 10:10:18

No my autistic child is a boy and he was tested fragile x and other chromosome disorders. We also had allergy testing arranged by the team. We were also offered MRI for large head size but declined as he would have needed a GA and we did not feel it was worth the risk.

Socci Thu 02-Dec-04 10:12:03

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Socci Thu 02-Dec-04 10:15:20

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beccaboo Thu 02-Dec-04 11:27:08

Socci, we're in the middle of this at the moment. The CDC have run various standard tests - things like liver/kidney function, blood count, thyroid function etc. They also ran some extra ones that we asked for - coeliac disease, fungal metabolites (candida). We got the Fragile X and chromosome results back yesterday, negative thankfully.

That's really interesting about the large head size. Ds' head was on the 99th centile when born, and still is at age 3. We were called back to measure it again when he was small. I wonder what the link is, Coppertop do you know? Is it brain size, inflammation of the brain?

jakbrown Thu 02-Dec-04 11:28:15

Heh Socci, my DD had several tests for metabolic disorders, a test for a rare form of DS, a test for Retts, an MRI and has been tested for epilepsy four times. Plus all the usual thyroid function, liver function tests etc. Interestingly, the paed said she has an enlarged liver which could indicate a metabolic problem (?). She had most of these tests at 18 months and the paediatrician who did them was 'certain' DD wasn't autistic. DD really 'emerged' into autism (!) in the second half of her second year. It's hard because you have to 'wait' for quite a while for the results of some of the tests. However, as your DD is older, they may not need to 'rule' out as many things, if you know what I mean. Ask whatever you need to ask, Socci, it's a crucial time for you and your DD.

Socci Thu 02-Dec-04 11:37:46

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jakbrown Thu 02-Dec-04 11:37:47

And like Beccaboo, Fragile X, too. She's just had a load more for things like coeliac disease, anaemia, any possible thing that could be affecting her development.

ps Just thought, I'd make sure she gets tested for EVERYTHING at the same time. Otherwise it's just more trauma, more blood etc and more visits and the whole thing gets elongated.

coppertop Thu 02-Dec-04 11:49:41

The Paed didn't explain exactly what the head-size study was all about but I think the study showed that there was a very fast rate of brain growth in babies with autism. I'm not sure if anyone has done any other research on this.

I think ds2 has always had a fairly large head though so I'm not sure how this would apply to him.

coppertop Thu 02-Dec-04 11:55:32

Now that I think about it, I wonder if ds1 didn't have extra blood tests because he'd had so many as a baby? When he was born he absolutely refused to feed at all. The midwives on the postnatal ward didn't listen to me when I told them that there was a problem and so ds1 ended up being quite ill in the SCBU. No one was sure if his illness was connected to an infection of some kind and so he was tested for pretty much everything, including having a lumbar puncture. It may be that those tests ruled out most problems - although presumably not specific syndromes.

KangaSantaMummy Thu 02-Dec-04 11:58:36

The head size is very interesting as DS has a large head he has to wear adult sized hats baseball caps etc.

At his school in the summer they have legionaire hats or baseball caps but for several years these have not fittted him so we have a adult one for him to wear. He is 9.

beccaboo Thu 02-Dec-04 12:04:05

Thanks coppertop. I've just googled it, here's a link to an article from New Scientist if anyone wants to read more.

http://www.newscientist.com/news/news.jsp?id=ns99993948

mullgedwine Thu 02-Dec-04 23:01:55

This is fascinating. Was going to post a sep. thread, but might as well add here. Just spent the afternoon with dd and our local autism consultant, as well as the paeds professor no less. DD is 2.2 and has just been provisionally dx as on the AS spectrum. Her head size is enormous, she has to have age 5-6 clothes to get it over her head, and is way above the 99th centile for her age. Macrocephaly and a partially open fontanelle are often indicative of ASD, or at least socio communicative disorders, apparantly. DD's fontanelle's are both still open - anyone else with ASD children got this? I think we know more than the medics do. DD is unusual in being a DD, not a DS. The ASD people want to see DS to check he is "normal".
SOCCI - the time up to age 3 is crucial. I feel awful asking{begging) someone to tell me that i wasn't imagining it and that my dd isn't "normal", but after today's dx i feel a huge weight has been lifetd. We are now part of a system, it has a process, multi disciplinary people agree that she is weird, i am not suffering from Munchausen's by proxy ( as dh suggested early on - great to have support) and that she is finally, hopefully, going to get some assistance. Whether she choses to come into the our world is down to her, but at least we are doing all we can. GOOD LUCK on the road well travelled.

Socci Fri 03-Dec-04 00:57:40

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Socci Fri 03-Dec-04 01:19:34

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Saker Fri 03-Dec-04 13:26:43

I had heard this in relation to whether you are more likely to have boys or girls. So the theory goes that women with longer ring fingers than index fingers are more likely to have boys and vice versa. The "science" behind that was also related to testosterone exposure in the womb although the specifics were a bit vague I think. I read it in a fascinating New Scientist article about whether women actually do (biologically) exert some control over the sex of their offspring. There were loads of ideas about how they might. Unfortunately can't find the article anymore.

coppertop Fri 03-Dec-04 13:30:23

Now I'm sitting here staring at my hands. Yes my ring fingers are both longer than my index fingers. Ds2 won't stay still long enough for me to get a look at his though.

Socci Fri 03-Dec-04 13:35:09

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Saker Fri 03-Dec-04 13:36:36

My ring fingers are longer and I have two boys .

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