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Undiagnosed 11yr old - 7 years of tests so far!!!

(14 Posts)
aprilfool80 Tue 06-Sep-11 22:00:20

Hi
I have an almost 12 yr old son who has been seeing a paediatrician since he was 4. It was 1st indicated at Nursery when he 3 that things were not quite right - misunderstanding simple instructions and trouble with transition. I had also noticed such things at home. On my own research I had suspected Asperger's by time I saw the 1st Consultant. So did she. However after having a triage assessment this was ruled out. He was then tested for Epilepsy as and was diagnosed with Benign Rolandic Epilepsy and medicated for 2 yrs - This has since been put down to a mis diagnosis!!! On all his reports they have always indicated he has Anxiety and LD. Various different score sheet type tests have been done and the frustrating part is school report one thing and his home behaviour is totally different - School report none of the things I see and deal with on a daily basis. He has now been ref to CAMS and we are waitig for an appointment. They are now going back to my original concern of aspergers but want a more accurate diagnosis.
Feel I am clutching at straws here!! I have even researched APD as well just to see, he has also been tested for disbraxia, adhd, inattentive add.

Whatever he has it is only mild but enough to make a difference. Has anyone else struggled to get a diagnosis for a child with mild symptoms!!!

Ineedalife Tue 06-Sep-11 22:10:56

Oh gosh I have a feeling we could be heading down your road!!

Dd3 is 8 and we first asked for a referral when she was 5, she has issues with tranisitions, routines, anxiety, co ordination.etc.

She has social communication issues, but not enough to Dx,
Is borderline Dyspraxic but has been discharged by OT's

We have been going to CAMHS for nearly a year and have been seeing a psyciatrist during the summer hols and she has completed a DISCO assessment with us. She wouldn't dx from the other assessments because she said there were too many discrepancies, caused by the crap school Dd3 was at before we moved her at easter.

I have a feeling she is going to tell us that DD3 is borderline for AS although I hope i am wrong and she does give a dx.

We are 4 years behind you and I can't imagine me having enough fight in me to continue much longer, the only thing Dd3 has been officially dx'ed with is hypermobility.

I hope you have success with CAMHS we have been pleased with ours generally and feel we have been listened to.

Good lucksmile.

lisad123 Tue 06-Sep-11 23:45:12

we were told dd1 had asd but was coping fine so no need to dx shock however six months later things quickly went downhill and we were lucky enough to get a dx. However, I had kept a daily diary for months which I took with me the second time round and the paed found it very helpful to see that we clearly had concerns, dd1 was clearly had asd and school were overlooking issues.
HTH

SparklePrincess Tue 06-Sep-11 23:58:30

My 10 year old dd has been failed by CAMHS & the education system in EAST SUSSEX for the last 4 years now, who simply cannot make up their minds. To start with they said its either very severe ADHD or ADHD & aspergers. 12 months later they did a complete U turn putting everything down to the breakdown in my marriage. hmm I have been disputing it ever since. I am now moving counties in the hope of finally getting somewhere.. sad Where do the rest of you live? Ive heard Dorset is good for SEN. Im moving to Surrey, as provision there seems better. Cant get any worse...

tabulahrasa Wed 07-Sep-11 01:12:56

DS had SALT at 3, OT at 5, saw the paed at 6...

He has a speech disorder, but no diagnosis for that because his other issues indicated something more, he meets the diagnostic criteria for dyspraxia and hypermobility, but again no diagnosis because his other issues indicated something more.

AS was raised as a possibility very early on, but they wanted to wait and see if his speech would resolve itself and then that would clear up some of his other issues hmm in other words they were waiting to see if he grew out of it.

He finally got a diagnosis of AS at 13, his only official diagnosis - the paed said verbally that she was willing to diagnose AS as he meets the criteria that she still thinks it's more than just that - not enough to put it in writing of course, lol.

His AS traits are on the mild side, but of course combined with the speech and dyspraxic traits it's not so mild combined - if you see what I mean.

I got to the point where I don't care what his diagnosis is of - he needs the support he needs no matter what' it's called, but with none at all, it made accessing certain services as officially he was classed as NT. And of course he was old enough to be aware if everything, but didn't have a reason for it, which was hard for him ( he couldn't really deal with you might gave...)

tabulahrasa Wed 07-Sep-11 01:17:55

That's have not gave (on my phone)

realistically the difference the letter diagnosing AS had had is to him, he finds it good to have it in black and White - and he can access things like a youth group for autistic teenagers.

His school have managed to ignore it just as well now it's official as they did before.

borderslass Wed 07-Sep-11 09:28:28

DS is now 17 was diagnosed as having GDD/severe LD's at 2 was under SALT and group and one to one intensive OT, ADHD aged 6 went to a EBD school lovely place and staff wrong setting.

He was assessed for Autism at 8 but he categorically did not have this as he interacted with his caregivers.
He was also assessed as SPD and APD at 14 although he has overcome a lot of the problems through us working on them with him. His EP argued the Autism DX at every review meeting and insured he got into a school for ASD kids teachers there said he ticked all the boxes as did paediatrician his mental health nurse and adult psychiatrist say he has all the signs he is due to get assessed properly in October.

He was also put on new meds in march and in the last 6 months has made more progress due to the fact he sleeps and is calmer than he has in years. His Dr asked how I felt about CAHMS and the ADHD DX I said he either doesn't have it or it isn't as severe and that we've been let down by them.

His nurse has also said that far to many young people are coming from children's team with no proper DX as they don't want to label them.

borderslass Wed 07-Sep-11 09:42:31

Also the CPN we saw when DS was 4 was my counsellor from when I was sexually abused his first words were oh we've met before I got the feeling he blamed me because he was my only son.

He also told me all he needed was 100% attention off me and he'd be fine I also had 2 DD's age 3 and 7 at the time I drove home in tears.

lisad123 Wed 07-Sep-11 09:47:09

we live in Herts, do not ever move here, they are terrible sad
We are moving to dorset

nickminiink Wed 07-Sep-11 13:06:18

Hi, same here my son is nearly 11, nursery picked up a problem at the age of 3 as he had problems which his speech and communicating. He has been under SALT since 31/2, beeon on school action plus since started school, seen by paediatricans and EP's for dyselxia and ASD, both ruled out after several tests. We are told he has poor memory, poor auditory processing, poor sentence recall, limited vocab. We have got the paed and EP involved again as we are concerned with his slow progress as he is several years behind his peers. Now the EP thinks he may have dyslexia and is under going more tests and paed is re-visting ASD. We have pursed a referal to Great ormond street hospital for APD, so at least we can rule it out. He is now under going a SA for hopefully a statement as he clearly needs additional help at school, but still no DX. It is so frustrating as we are pursuing everything and no one can direct us to the cause of his LD's. Over the last few months he has developed a lot of motor TICs very distressing for us to watch as now it's something else for us to worry about and not know the cause. So you are not alone.

Ineedalife Wed 07-Sep-11 13:54:33

Borderlass... I find that shock. The children's team doesnt want to label children!!!

That is the most ridiculous thing I have ever heard. FGS. Do they think that parents would jump through all their hoops, take time off work to go to their appointments. Spend years trying different methods of parenting if the child didn't need a bloody label.

And

It is ridiculous to say that all your Ds needs is 100 percent of your time. I think it is unhealthy and a sign that something is amiss if a child needs 100 percent attention from a parent.

Sorry rant overgrin.

dolfrog Wed 07-Sep-11 15:29:45

aprilfool80

Auditory Processing Disorder (APD) is a listening disability, or about not being able to process what you hear, all sound based information which includes speech. Those who have APD have problems following conversations, and multiple verbal instructions.

APD is an underlying cognitive cause of the dyslexic symptom, and one of the multiple contributory factors that can cause the communication problems included in the criteria of issues for an ASD diagnosis, including Aspergers.

Some who have APD when speaking have to concentrate and focus so much to find the correct words (word recall problems) or find alternative way of expressing what thye want to say, and getting the words out in the correct order (associated sequencing problems) that they can appear aspergerish as their working memory has to switch off their usual receptive abilities to enable their APD coping strategies to work. Once they have stopped speaking thier visual body language reading and lip reading abilities are able to function again to work around their APD problems.

APD is often miss diagnosed as ADHD, this is because those who have APD especially in the education system can quite easily loose the plot of what is being said or discussed, and tend tot day dream as a result. this has nothing to do with attention or concentration abilities more about being able to process what is being said, and understand the issues being discussed. However ADHD come with a chemical coshe which teachers and some parents like so that they do not have to understand and support the real problems.

Many who have APD especially those who have a high IQ are so good at developing alternative compensating skills that they can appear on a good day as if they have no problems at all, the reality kicks in on a bad day, when it all goes wrong. So things have to be based on a bad day, and good days have to be treated as a bonus.

There is more information about APD in the links below
Medical Research Councils Institute of Hearing Research
UK APD Steering Group
Auditory Processing Disorder in the UK (APDUK)
and from the USA
APD Evaluation to Therapy: The Buffalo Model
American Speech-Language-Hearing Association (ASHA)

You could also have a look at my Invisible Disabilities Pubmed research paper collections which includes links to my PubMed research paper collections covering many of the issues you have also mentioned

I hope this helps

AspergerFiction Wed 07-Sep-11 15:49:13

7 years is too long - all of this must be driving you crazy.

CAMHS and everyone else involved will take their own sweet time. In the meantime nothing changes for your son.

What are the issues which you see at home? With AS it is all too common for you to see a different side of the child that the one they see. That is simply because it takes all of his effort/energy to hold it together at school. By the time he gets home he is stressed and that can show in various ways - anger/tantrums etc etc

Is he better during holiday periods?

What about other issues:

- how is he with other children/ dies he have friends
- any other traits you have noticed?

bochead Wed 07-Sep-11 16:23:46

Gt Ormond Street do private diagnoses ; )

It's the route I'm currently saving very hard for (not easy as a lone parent on benefits & a mortgage) after my local pead refused to refer for a 2nd opinion

Everyone who works with him on a daily basis, (as opposed to meets him in a clinic for 30 mins on a good day)would like some clarification as to his diagnosis and Gt ormond Street is apparently where you'll find the experts able to make that differential diagnosis.

Sadly my own local PCT is deffo of the "we don't like labels", and "lets wait and see how he grows for YET ANOTHER year" school of thought. There's no consideration given to the lost childhood slipping by, and the disruption to family life, education etc, parents earning capcity and more caused by years of delay. I have a neighbour whose son was diagnosed aged 20 despite his mother's efforts from age 2 for his problems to be taken seriously!

A child can be seen within a few weeks/days if you get a private appointment, even on the NHS it's only 4-6 weeks after referral from a pead (my current stumbling block). In your shoes I'm afraid to say private is the route I'd take if only to save secondary school for him. You don't say where you are in the country but there may be other regional centres with the right expertise - it's worth doing your research before shelling out.

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