Here are some suggested organisations that offer expert advice on SN.
ADHD, SID, CD, ASD, all those and still nothing clear ... after 2 years of psychological tests, i could cry and laugh in the same time(9 Posts)
... continuing an older thread, but with a slightly different subject ... this is what I am going through and feel like i'm loosing my mind. We took DD to a psychologist 2 years ago (DD was 4 1/2), she said, after 3 months sessions, she could notice smth like autistic spectrum bewhaviour but it was too early to say anything. Comunication problems, i asked? She said it's too early to say. Come back later she said. We then took DD to another clinic (another 1 month of tests), they said serious sensory integration issues. OT therapy necessary. DD was hyperactive so i asked about ADHD. Noup, they said. I felt like smth is very wrong about DD's way of talking. They said no problems. We started OT. in the meantime, we took a speech and language assesemnt in another (a third one) clinic. they said big problems! Language therapy needed. Then we took DD to another (fourth) clinic specialized in learning difficulties (DD can't read or write properly), explaining about all DD's problems, speech, lack of organization skills, lack of social skills, hyperactivity, etc etc .... she was dx with ADHD this time and possible dyslexia and communication disorder! nothing about her not being able to organize herself, to make friends, etc. Now i read about dyspraxia ..... DO THEY REALLY KNOW WHAT THEY ARE TALKING ABOUT???????? I'm tired of suggesting things to one clinic, and getting confirmations from another one .... More diagnosys every year .... Just had to spit it out here .... I really don't know what we are going to do .... what to do next, where to go next ..... which is actually the truth?!
Fisrt of all, i'm very sorry you are feeling so down, and that your path to a true/exact dx is so difficult. All this dx palaver can be frustrating...
A lot of these different disorder like those you mention do sort of shade into one another or slightly overlap each other.
But that is no excuse for the professionals you have seen to throw some sort of confusing dx. Sometimes as the child gets older, some traits become more obvious and dx can be reviewed.
If you feel your dd's dx of adhd isn't complete, then maybe go and speak to your gp to see what referal could be made.
Is your dd is involved with salt, school senco, or ed.psy,...?
Are these clinics you mention NHS ones?
oh, we live abroad ... but that shouldn't be an excuse, should it? the most frustrating thing is that i do have time to google around, and reading too much is sometimes not wise .... the ones around me tell me i worry too much, but then the doctors can't make up their mind, so we are still not sure what to do, where we are .... then reading more .... etc, etc, etc, on and on like this .... with 4 different dx's right now, and still issues that don't fit into the diagnoses we got, i feel like i'm going nuts! i just don't know what to do right now ....
Do you have money or opportunity to go private, to a very no-nonsense lady called Dr Daphne Keen in London. She spent 2 hours in a room with me, DH and DS and gave us an autism diagnosis. You can get the money back on BUPA if you have it. I have a feeling that I would have gone through a lot of the same crap you had gone through if we had not found this nice (though expensive) lady. For what it's worth, I think that much of what you describe for your dd's symptoms can form part of autism, it being such a broad spectrum . I am amazed/horrified that you were told 4 1/2 is too early to diagnose autism - that is pure bollocks. Perhaps she is mildly autistic, with a touch of ADHD - my boy is totally hyper, but does not have a separate ADHD diagnosis as hyper so often goes hand-in-hand with autism. Good luck!
not much that comes to mind to maybe help with your imcomplete dx.
All i can offer is a virtual hug and sympathy towards your position. I understand how annoyed and fed up you must feel and that is not much consolation.
I hope you get some appropriate definate answers soon.
Children with ASd often have a long list of problems - all as a result of the ASD. My dd (?Asp) has: communication problems; major food issues; generalised anxiety; insomnia; big coordination issues; problems with fine motor control - the list goes on. If you focus on one little bit of the child - like say the eating - then an eating disorder specialaist would probably dx her with an anxiety related eating disorder, and then w could fucus on her comunication issues and get her dxed with a communication disorder and then we could probably get her dxed with dyspraxia etc etc. If you look at teh whole picture though then Aspergers or another ASD covers it all.
mysonben, thank you for the hug, and one for you from both me and DD It's so nice to just hear a word of encouragement .... sickofsocalledexpert... we are so far from london, but hoping to get back to europe in the near future. it's just so frustrating out here in the bushes as for the mild adhd, oh, mild or not, some laughed at us when we mentioned it, the other ones told us is certainely it. What to believe? The early diagnosis yes, that was the most bullshit thing i heard, and funny thing was that the teacher at that time was supporting the idea. DD is hugging everybody and that was enough to fool teachers, psychologues, etc. etc.
catkinq, i thought of aspergers too, but when i mentioned to one of the 'specialists' we met she just ignored it.
they ignored other things too, and i was just wondering if it's me to be paranoid, to have read to many crappy articles on the net or .... anyway, it feels really good to be able to just talk about what hearts, over here.
.. oh, i read my last post, i guess i am dyslexic sorry for all the bad spelling (DD was all around me and yeap, it's so easy to blame it on her )
Hi Joburg. My son is by the sound of it somewhat similar to your dd. He also had a difficult start to life (do not want to discuss on open forum ) to throw into the mix - which I think for ds was significant and certainly made the experts cautious and want to sit and wait in the hope of catching up. It has taken many years to get a complex mix of dx for him and even now I worry that this bundle of letters do not describe him !
I feel for you because I spent years searching for a dx and ways to help ds - and that limboland is so upsetting ( and costly)- never getting answers. Ds had ASD added to his ADHD and ModLD when he was nearly 8. I know he is unique and not quite like others with the same combination of difficulties ( no children ever are). He also has some dyspraxic difficulties but the OT said she felt it would be wrong to stop at dyspraxia because of his undiagnosed difficulties - frustrating at the time though. I have come to terms with it as much as I can. I think that final ASD did help to stop me searching for a cause, because it gave me a tool - language to understand and help my child. Now I look more at what can I do and finally allow me to come to acceptance.
Also sending a hug!
Ps we are trying home made SIT too and I think it helps a little.
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