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 Latest update

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Jacqueline



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PostSubject: Latest update   Thu Feb 05, 2009 4:34 am

After an emergency appointment yesterday with CAMHS we are changing Joshua back to Equasym 10mg in themornign and 5mg at lunchtime - he hates taking lunch time pills but we don't really have a choice at the moment.
Long term plan is to get him on Staterra but it has contra indications for asthma so may not be possible.
I think I'd go mad without Jackie at CAMHS!!!!
She is v worried about Joshua's weight - now out of the bottom on the growth chart - and his mood - Friday he wanted to kill himself and he's only 7!!!!!!!
Poor kid doesn't know if he's coming or going but is trying so hard at school.
The electrician thats fixing our ights spent ages wiht him yesterday explaining what he was doing and today bought him a giant pencil for a present - Joshua think's he's really cool - why can't everyone respond to these kids this well?!?!?!?!?!?!
Next thing is gastric results next week, then another follow up with CAMS, then chest clinic, then hopefully ed physch & phsych at CAMHS
It feels never ending...........
geek
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anth
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PostSubject: Re: Latest update   Thu Feb 05, 2009 7:05 am

brill to the electrican , hes 1 in a million then xxxxx

just catch your breath , and don,t rush things keep us posted
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Jacqueline



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PostSubject: Re: Latest update   Tue Feb 10, 2009 11:51 pm

So endoscopy didn't show any damage but half the samples lost!!! But good news.
Allergies slightly worse
More blood tests
Lost 1kg in a month - if doesn'#t start putting weight on mya have to tube feed.
Hospital have lost records before e was 5 but...he hasn't put any weight on in 2.5 years and has only been on meds 1.5 years - gastric man is the only consultant that sees this is not only to do with his ADHD
Got to go back in 3 months
Also in trouble with local hospital for missing appointment that we never got sent - HA HA

XX
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anth
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PostSubject: Re: Latest update   Wed Feb 11, 2009 2:21 am

ok xxxxxxxxxxxx
at least u no now ,
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Jacqueline



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PostSubject: Re: Latest update   Wed Feb 11, 2009 9:54 am

Trouble is we don't know anymore than we did before so still stuck with the same problems!!!
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anth
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PostSubject: Re: Latest update   Wed Feb 11, 2009 3:23 pm

just keep trying and don,t give up ,
as joshua needs u as much as u need him , to win ,
hopefully 1 day , u will see the lite at the end of the tunnel , xxxxxxxxxxx Very Happy flower
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Jacqueline



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PostSubject: Re: Latest update   Mon Feb 16, 2009 1:53 am

Ugh!!! Joshua is trying so hard with the Equasym but is still having bad side effects. He knows they help and he needs them but they make him feel crap. On Saturday his chest hurt and he was walking round holding his head because the headache was so bad.
Yesterday we just let him get on with it with no meds - he played on his own all day and mostly didn't even interact with us but when he did he was very happy not like to withdrawn little boy on meds!
Can't win!!!!
XX
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Tracy

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PostSubject: Re: Latest update   Mon Feb 16, 2009 12:38 pm

That is really SHIT!!! jacqueline. Crying or Very sad What is next, just continuing to monitor the situation?
Big hugs. ((((((((((jacqueline))))))))))
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anth
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PostSubject: Re: Latest update   Mon Feb 16, 2009 3:20 pm

oh lacqueline , sorry to hear ,
just keep monitoring the situation
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tina
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PostSubject: Re: Latest update   Mon Feb 16, 2009 4:04 pm

oh god hunnie big hugs were all here for you xx
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Jacqueline



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PostSubject: Re: Latest update   Thu Feb 19, 2009 1:46 am

So now all I'm getting him to eat is bread and he supposed to allergic to wheat! He ate a big loaf on his own over the weekend.
Had a long chat with my mum last noght and we reckon we need to someone who'll start from scratch and look at all of him not just one little bit.
At one stage they thought he had appenditicitis and I'm wondering if it's something silly like that that just keeps grumpbling away not enough to make him ill but enough to upset his system.
His blood tests show he is absorbing enough nutrients so they don't know why he is losing weight.
Weighed him this morning in heavy jeans & sweatshirt and he's the same as he was at hospital last week in less clothes - think he's still losing!
Mad
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Tracy

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PostSubject: Re: Latest update   Thu Feb 26, 2009 2:35 am

Not been on for a while, been busy. Sorry to hear there is no good news to report. Anything new to update with? Hugs. xxx
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anth
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PostSubject: Re: Latest update   Thu Feb 26, 2009 6:49 am

jacks cahms appointment 4th march 09
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wendywoo

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PostSubject: Re: Latest update   Fri Feb 27, 2009 3:24 am

is there anyone you can go to, to have a overall check over with your son?

thinking of you and your son, hope it all gets better for you both real soon x
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