difficult child likes to keep me busy and confused....

[wolonfab]

well we had a new one with difficult child this last few weeks

He has Headaches but not normal take a pill and sleep it off ones....These are the ones that cause disassociation with his legs and arms... He has pain in the back of his neck like his head is coming off...his ears feel like they have holes in them...... (anyone else have a difficult child with this type of thing?)

So after 3 lots of this (school, home and shops) and him screaming in pain and then crashing off for sleep and then waking up and throwing himself into walls etc.... i took him to my GP...who says i dont want to do the tests take him to the pead...so we now have to wait for another week.....

He also tells me this weekend i was outside and he was talking to me (i wouldnt answer him though he says) but i was not outside when he says i was.....he has now seen the pysc 9 times and still no diagnosis... he sliced his baby sisters hair off this week... kicked holes in my wall...... and destroyed a mattress with a knife.....am very tired...so I finally went onto medications and then had a reaction....he may not be medicated but at least one of us is.....

 

[Wiped Out]

How scary about the headaches. He definitely doesn't sound stable right now-I wish there was a way they could see him sooner. Hugs to you.

 

[LittleDudesMom]

Yeah, something is definately going on with difficult child. Like Sharon, too bad they can't see him sooner. Sounds like he is pretty unstable. Try and stay calm for the next week.

Sharon

 

[smallworld]

Paula, has he ever been evaluated for seizures? Seizures can cause behavior problems. You should ask for a referral to a pediatric neurologist.

 

[Marguerite]

I was thinking along those lines too. Also thinking about the possibility of atypical migraines. We used to have an absolutely brilliant neurologist in Sydney for migraines - Professor James Lance - but he retired years ago. He kept practising for years, there's a chance he may still be practising, but he DID pass on a lot of his ideas and techniques to a number of currently practising Sydney neurologists. You could ask your pediatrician if he thinks a referral to a neurologist/student of Prof Lance's may be worth considering. It would also check out the seizure possibility.
Prof Lance was based at POW, handy to Sydney Children's at Randwick. I'm sure he must have former students now at Westmead as well as other hospitals.

It's a long shot, I know, but it's about all I can come up with at the moment.

Have you talked to the psychiatric about the headaches, and about him talking to you when you know you weren't there? THAT worries me a lot. There is something very wrong here and I know it must be so upsetting and frustrating for you - you're doing everything you can and more, you shouldn't have to deal with all these delays.

Let us know how you get on with the pediatrician. How is the school coping with him, with Term 2 just gone back?

Marg

 

[wolonfab]

Apart from swearing and weird noises...he is doing okay at school....He doesnt want to go and has to be forced..he says everyone is telling him what to do all the time and he cant handle it. I told him its life kid get used to it...He is holding out till he gets home then going totally out of control...he drives himself (and me)up the wall till 6 pm when he crashes from exhaustion ... then he has a bad night of dreams and sleepwalking.... and is exhausted the next day

The pysc was the one (when i called ) who said to talk to the gp so we could get some tests done to rule out ALL medical things first... of course my GP wont touch difficult child at all so we have to wait for the pead...am going to be changing Gps me thinks.....

 

[Alisonlg]

Oh hun! Your journey has been so terribly frustrating and troubling from just a bystanders standpoint, I can only imagine how you're feeling. I'm sending out many gentle hugs your way!

 

[Marguerite]

Did you get back to the psychiatric to mention the GP refuses to do the tests on difficult child? or at least, mention it next time. It might show how difficult child has others feeling nervous.

Changing GPs - may be a good idea, as long as you can get difficult child's files transferred. There should be other, competent GPs in your area who also bulk-bill.

I understand the holding on until he gets home - they try to do that because they know We will take more from them than the school.

I'm not sure what medical things the psychiatric wants to rule out - are we talking psychologist or psychiatrist? Because a psychiatrist should be able to order tests. They just prefer to pass it on to the GP, because it's common sense for the GP to be the spider at the centre of the medical web.
Unless it's good old HIC again, waiting to attack a doctor for allegedly ordering too many tests. Some tests look better on paper when ordered by a specialist, rather than a GP.

To find a good alternative local GP, ask around at the local pharmacies. Do a survey, see who they suggest. I could ask mother in law & easy child, but easy child rarely went to the doctor and mother in law has been gone from your area for a few years now, the GP picture will have changed. Besides, what worked for them may not work for you.

Marg

 

[wolonfab]

Hi all
well our update.....
spoke to the boys psychiatrist who has told me at present difficult child has a diagnosis of "mixed state of emotions and behaviour"..... what the?

she said thats all she can say right now.... she also said at times he has signs of autism(aspergers) and then other times he doesn't..... I am so confused its funny.....

i told her about gp refusing to do tests and she was shocked.....But when i told her about the youngest suffering from Jays abuse she asked me why i think he picks on her.... she asked if its jealousy......i asked him and he told me he doesn't know why.... He sometimes cries after he has hurt her which i guess shows he cares.....

He told my mum this week that when she dies he will be sure to die too so they can be together cause he doesn't want to be here without her..... I just hope she doesn't did for a long time...LOL

 

[Marguerite]

That's a description, not a diagnosis, surely? But I guess it's better than the wrong label which would need to be undone later.

I'm glad he can express his love for his grandmother, though - so he does have some deep emotions in there, for his grandma and sister, at least. Somewhere in there is a lovely, bright little boy, who is not coping very well with the world, and life.

I'm glad the shrink agrees about GP. I'm currently checking out a new GP - he seems great in so many ways, then a weird thing will come up (such as he won't prescribe strong painkillers for a terminal cancer patient released from hospital on palliative care) and I wonder if the guy's got all his marbles. In this GP's case, I think he's scared of HIC coming down on him like a ton of bricks for over-prescribing opiates. I wonder if your GP is worried about HIC accusing him of over-testing. If the computer 'flag's' him, he has to justify EVERY test he's ordered for every patient, in the last two years. Failure to be able to justify any one thing means he has to pay Medicare back for all the pathology tests, even the ones that were clearly justified.

Plus there's the paperwork it causes. Some tests are tricky, and there's always an order in which tests should be done. A patient turning up to a doctor saying they feel run down and feverish - the doctor may suspect glandular fever (EBV) but he can't wade straight in and order the test - he has to begin with a standard blood test (FBC, Fe, Hb, ESR). Then when you go back in a few days if you still feel crook, he can THEN order LFTs and EBV titre. It's a stupid system.
The doctor can't order an MRI first off, either. he has to order X-rays first, then CT, then MRI if he still hasn't got any answers and if he STILL thinks an MRI can show detail not yet seen. He has to be able to back up suspicions with a provisional diagnosis, at least to HIC.

So, to summarise - it's likely your GP is a chicken, like my new bloke. Scared off by our bullying bureaucracy.

Did the shrink go ahead and order the tests? I hope so.

Marg