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Sciencey Autism's picture
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Sciencey Autism


Participating in a Drug Trial

Thu 19 Mar 2015 5:08am

Hi everyone,

Going to start having Boo participate in a drug study tomorrow.  (Boo is 9, HF ASD.)  The one starting tomorrow is supposed to help with social connection - which is one of the toughest areas for Boo.

Sounds like it will be a 4 week double-blind study -- with the opiton to continue if Boo got the placebo in weeks 1-4.  He is amazingly OK with the weekly blood draw because he gets to be a citizen scientist.

Here is my detailed blog write-up on how things are going as we start.  Will update everyone as we progress.  

falafal0's picture
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falafal0


Eating disorders

Sun 15 Mar 2015 2:05pm

Hi, I just joined today, trying to find someone somewhere who may be going through/gone through what we are. Our youngest child was diagnosed with autism at 2.5 years old - he's now almost 7.5 years. A few months after his autism diagnosis he was diagnosed with Idiopathic Thrombopycenpenic Purpura (life threatening bleeding disorder). A couple of years of this, it cleared up, then a few months later started having vomiting fits which led to a diagnosis of metabolic acidosis (another life threatening metabolic condition).

ladyeve's picture
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ladyeve


Seizures

Fri 13 Mar 2015 11:34pm

My son is having so much seizures it is tearing me apart, so distressing, medications not seems to be working, keep changing but seizures are getting worst.

Does anyone knows what food may trigger a seizure, he is on a wheat, gluten and dairy free diet,HELP ME PLEASE SOMEONE, I am so tired!!

Thanks 

 

TanyaMonty's picture
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TanyaMonty


Back from hospital

Sat 28 Feb 2015 5:15am

Ok so this will be a little long but first the news. scans all came back negative no tumors or masses thank God! But we are still left with few answers as to why his HVA levels are off and so on. Basically have to keep an eye on the levels and then decide when and if they want another scan. 

TanyaMonty's picture
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TanyaMonty


Needles?..

Tue 24 Feb 2015 4:46am

How can I prepare my 2 year old autistic son for a needle? He has to get one for his tests later this week and I haven't the faintest idea how I can prepare him. I have showed him pics of the hospital and we have been talking to him about going and reminding him about the playroom and all that. 

TanyaMonty's picture
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TanyaMonty


Hospital Round 2

Sat 21 Feb 2015 3:45pm

So our 2-year-old little boy had gone in for a MRI, overnight EEG and blood and urine tests prior to his diagnosis of Autism. The whole idea was to rule out anything else... and they sort of did but not fully. They found his HVA levels elevated. They had us repeat the test. His levels had nearly doubled in 2mons. They suspect he has a neuroblastoma in his chest or stomach. This Wednesday we are heading back to the hospital about an hour from us for MRIs and CTs for his chest and stomach. Also some other metabolic test or something that for the life of me I can't remember the name of.

TanyaMonty's picture
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TanyaMonty


Essential oils anyone?

Tue 17 Feb 2015 5:43am

I participated in a group on essential oils and got some info from them on ones reccomending for sympotoms asssociated with autism. Do any of you use them? if so which ones and what for? we are going to be trying  a few different ones and see if any help reduce our little man's stress and anxiety.

michaelz's picture
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michaelz


circumcision and autism

Sat 7 Feb 2015 12:47pm

Circumcision may be connected to a boy's chances of developing autism, according to a new study out of Denmark.

Boys under 5 who were circumcised were twice as likely to have autism as boys who weren't, according to a study of 340,000 Danish boys.

The reason for the correlation is not clear, but may be related to the agony of the procedure.

universal1's picture
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universal1


counting down the days

Fri 6 Feb 2015 12:59pm

its 12 days to my ADOS assessment and it can't come soon enough. But being  currently diagnosed with mental health i'm worried that if and when i finally get a 'yes' to autism in some form i will obvously have to come off mental heath medication. I have 15 years worth in my system and am worried about any withdrawral that will enevitably happen. Has anyone been in a similar situation because i've read that mistaking autism for mental health is common in the autism community The NHS does this a lot. Can any one help me on this one?

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L Farrelly
NNatalia89's picture
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NNatalia89


Dentist problem please help

Tue 3 Feb 2015 10:28pm

Hi all. I have a dentist problem. But firstly will tell u about my dentist experiences.. So as a child I was very anxious if needed to go to any different dentist that one I was use to since a baby. Though still hasn't been very scared and mostly seated trough calmly. As an 15 year old I have an trauma with dentist who put pain killer not correctly, I never been in so much pain! Dentist was screaming at me that he put medicine correctly and talking me names! Soon after (as he was so angry he force me to leave before he finished) I got massive infection & tooth been took out... 

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Autism. It's not a processing error. It's a different operating system.

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