[Mamabug]

Thank you for the links and information BMJ. I will be seeing her this weekend - a rare treat as she will become godmother to my youngest - so will definitely be giving her a hug then.

[Marina_D]

Ladies, i am in a panic.... I know this is an ASD related post but i need to share...

My gorgeous son now 19months was dx with stage 4S Neuroblastoma of the adrenal gland, with metastatis to one lymph and liver at 3.5months. He had surgery at 4.5m and when he was 7m he was cleared of all liver lesions etc.

We commenced 3monthly surveillance - urine tests as well as abdominal ultrasounds. Every testing has come back clear with the exception of this time...one year on. His dopamine levels are elevated - outside the normal range. The oncologist said he needs him to follow a specific diet for 24 hours and needs another sample. If its elevated, we do a CT scan to see whats going on. Oncologist felt it could be a dietary thing but my son doesnt eat anything thats on the "foods to avoid" list which could affect dopamine levels.

I read somewhere online (i know i shouldnt do this but i do...) and i read somewhere elevated dopamine levels could have something to do with ASD, OCD etc.

My mind is going mad at the moment...i know im not being rational - but has anyone heard this??

I pray that this is just a one off and it hasnt come back...i dont know what Id do if it did...God help me.

[twistedkites]

Marina I don't know anything about brain chemicals but I couldn't read this and not send you huge hugs. I just can't even contemplate having to surveil my son for cancer. He must be an incredibly resilient and wonderful little boy and he's got a brilliant Mum. Hope you get answers/ all clear very soon. x

[ellie1326]

OMG huge hugs - hope it's nothing

[jdmum1]

MarinaD - i am so sorry you are so stressed...sometimes google is your worse enemy :/ I have never heard of it but hope you get some answers so u can not panic and worry!

DS got diagnosed with ASD end of January...finally are hoping to having an appointment with the autism advisor in a couple of weeks just waiting for them to confirm a time. Do i take my DS with me to this appointment? or can i go without him? Also what should i expect with meeting with the advisor first time.

Frustrated...ringing centrelink is bad enough but trying to get through to ADHC is IMPOSSIBLE!!! i have been on hold for up to 30mins each time where i have then just had to give in and after 2 weeks trying still have not got through to them its driving me batty!!!!!!

[TiredbutHappy]

Hi Jdmum1

Are you in NSW? Our autism advisor was through ASPECT and they did my interview over the phone. There was no need for them to see DD or even me for that matter. I just needed a quiet room where I could speak to them (for about 45 minutes from memory).

They went through some questions so they could submit my Fahscia funding form, and then went through a range of E.I options.

Good luck.

[jdmum1]

Hi Jdmum1

Are you in NSW? Our autism advisor was through ASPECT and they did my interview over the phone. There was no need for them to see DD or even me for that matter. I just needed a quiet room where I could speak to them (for about 45 minutes from memory).

They went through some questions so they could submit my Fahscia funding form, and then went through a range of E.I options.

Good luck.

Gumbette yes i am in NSW ... we were delayed in get DS diagnosis report which delayed sending off the paperwork to the autism advisor through aspect. Then yesterday i missed a call from them, and they emailed me with date for meeting...but the date isn't a good day so i rang back left a message and an email so hoping they call back today if not won't hear from them until Monday. So if i can do it over phone that would be even better.

[Marina_D]

Thanks ladies for your comments and well wishes.

Jdmum - i hope you get some resolution soon. Im still waiting on my report, but Ive contacted the Autism Advisor who sent me out paperwork, so still waiting for the report to submit them. It sounds like youve been through a very frustrating time. I hope it resolves quickly for you now.

[TiredbutHappy]

Gumbette yes i am in NSW ... we were delayed in get DS diagnosis report which delayed sending off the paperwork to the autism advisor through aspect. Then yesterday i missed a call from them, and they emailed me with date for meeting...but the date isn't a good day so i rang back left a message and an email so hoping they call back today if not won't hear from them until Monday. So if i can do it over phone that would be even better.

They will definately do it over the phone. In my case I'm working full time, and they were only too happy to make an appointment that suited me and I avoided having to take a day off.

Good luck.

[in(s)ane]

Marina, just saw you post above and thinking of you guys. When should the testing be completed?