just diagnosed - advice needed!

Discuss getting a diagnosis, educational help & electronic devices and apps for autism.

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EmilyV
Posts: 64
Joined: Thu Feb 09, 2017 9:41 pm

just diagnosed - advice needed!

Postby EmilyV » Mon Feb 20, 2017 11:22 am

My 24 month old boy was diagnosed a month ago with ASD. Although I suspected that something was off, I was hoping it's something like social anxiety and not autism. Needless to say, we are devastated. He is our only son, and I just turned 40 so not sure if we can have other children. My son has low eye contact and restricted affect and sometimes does not respond to name, but no speech delay. I am not convinced if he has repetitive behaviors or not. My son was actually pretty sleep deprived on the day of evaluation and he made even less eye contact than usual. They told he has normal cognitive abilities but that his Autism is moderate to severe. Can't wrap my mind around this. Actually noone noticed even that he had it except for my suspicions prior to evaluation, even two different general pediatricians thought he was fine. So how come they are saying it's moderate to severe?

The developmental pediatrician who evaluated him only recommended intensive ABA which we are starting. But this forum opened so much more to me in terms of treatment options. Actually it's pretty inspiring. Our son has eczema (pretty awful on his cheeks) and had allergic colitis with microscopic blood in stool as a baby, and had colic for 5 months. I started reading about gut and neuroinflammation - ASD connection. Please recommend where to start and what tests we can do to figure out what's wrong and how to change his diet/determine what supplements to give etc.
I am thinking to have some genetic testing including microsomal microarray, karyotype,fragile X and neurodevelopmental-extended panel. also thinking to do a celiac disease test for gluten. Should we do any testing for B12, folate, glutamate, etc?
Any advice is welcome.
Also if anyone knows any good specialists in New England/MA area please share.
Thank you! :?

crazydaddy
Posts: 37
Joined: Wed Dec 07, 2016 1:05 pm

Re: just diagnosed - advice needed!

Postby crazydaddy » Tue Feb 21, 2017 5:34 pm

The first thing you should do and which is complementary to everything else is to try the diet change for your son...

Eczema is only one sign of the gut imbalance.

My wife and I (also in MA) were slow to put this intervention in place but when we did we saw tremendous gains in terms of symptoms.

Gluten Free, Casein Free, Soy Free (GFCFSF) is one place to start and you can go into more advanced diets.

94% of kids improve on this diet and we swear by it.

EmilyV
Posts: 64
Joined: Thu Feb 09, 2017 9:41 pm

Re: just diagnosed - advice needed!

Postby EmilyV » Thu Feb 23, 2017 9:51 pm

Thank you Daddy!
We are going to do it definitely. Did you go cold turkey or transitioned slowly? Did you use a nutritionist or did it on your own?

EmilyV
Posts: 64
Joined: Thu Feb 09, 2017 9:41 pm

Re: just diagnosed - advice needed!

Postby EmilyV » Tue Mar 07, 2017 11:05 am

I just want to mention a website that answered a lot of my questions about diagnostics, and also gave some hope. Autism Navigator has a great video glossary and also a great course about autism with videos. http://resources.autismnavigator.com/
It's free but requires registration. It shows great improvements in kid's social skills with therapy!

Winnie
Posts: 4227
Joined: Sat Mar 18, 2006 2:48 pm

Re: just diagnosed - advice needed!

Postby Winnie » Tue Mar 14, 2017 7:33 pm

EmilyV wrote:I just want to mention a website that answered a lot of my questions about diagnostics, and also gave some hope. Autism Navigator has a great video glossary and also a great course about autism with videos. http://resources.autismnavigator.com/
It's free but requires registration. It shows great improvements in kid's social skills with therapy!


Hi EmilyV -- thanks so much for posting this resource. You have every reason to be hopeful about progress!

You might be interested in this forum thread entitled Research: Recovery, Optimal Outcome, & Diagnostic Stability. It is sort of a compilation of research pertaining to progress and outcome:

http://www.autismweb.com/forum/viewtopic.php?f=6&t=29107&start=20
Winnie
"Make it a powerful memory, the happiest you can remember."

EmilyV
Posts: 64
Joined: Thu Feb 09, 2017 9:41 pm

Re: just diagnosed - advice needed!

Postby EmilyV » Sun Mar 19, 2017 10:25 am

Thanks Winnie! this thread is super helpful!

KwameGhana
Posts: 4
Joined: Tue Mar 28, 2017 10:14 am

Re: just diagnosed - advice needed!

Postby KwameGhana » Wed Mar 29, 2017 5:11 am

Hi,
My 29 months old son was diagnosed with ASD two months ago and we were devasted and didnt know what to do especially since there is very limited knowledge of it in Ghana, Africa. He has does have eye contact, sometimes responds to his name, speaks very few words (no mama or dada but ball, car, cat and most alphabets). He doesn't sit still nor follow instructions upon request, even though sometimes i think he understand what i am saying. I my part of the world, there is almost nothing like institutions which provide early intervention. The most i can get is speech therapy. Can you share some practices and habits which i can adopt to help him improve. Is there a website i can learn about these practices.

Thank you

EmilyV
Posts: 64
Joined: Thu Feb 09, 2017 9:41 pm

Re: just diagnosed - advice needed!

Postby EmilyV » Sun Apr 02, 2017 7:08 pm

parents can themselves do Denver model that most services in the US based on - an excellent book that we are using is this:
https://www.amazon.com/Early-Start-Your ... 160918470X.
It was recommended by our developmental pediatrician who diagnosed my son.

KwameGhana
Posts: 4
Joined: Tue Mar 28, 2017 10:14 am

Re: just diagnosed - advice needed!

Postby KwameGhana » Wed Apr 05, 2017 10:25 am

Thanks EmilyV, i will check it out.

raun cesar
Posts: 30
Joined: Thu Mar 02, 2017 5:17 am

Re: just diagnosed - advice needed!

Postby raun cesar » Thu Apr 06, 2017 6:52 am

Sorry to hear about your son. Diet should be the consideration to spark improvements...

KwameGhana
Posts: 4
Joined: Tue Mar 28, 2017 10:14 am

Re: just diagnosed - advice needed!

Postby KwameGhana » Sun Apr 09, 2017 4:56 am

Thanks raun cesar. In terms of diet, is it mainly giving him gluten-free? Is there anything more?

riggie
Posts: 38
Joined: Fri May 20, 2011 7:18 am

Re: just diagnosed - advice needed!

Postby riggie » Mon Apr 10, 2017 1:48 pm

I agree with Cesar - Working on diet can lead to big improvements. Besides gluten, you'll want to avoid dairy (casein) and soy as well. Here is a good resource and guide to get started: http://www.tacanow.org/family-resources ... -10-weeks/

KwameGhana
Posts: 4
Joined: Tue Mar 28, 2017 10:14 am

Re: just diagnosed - advice needed!

Postby KwameGhana » Thu Apr 13, 2017 8:41 am

Thanks Riggie, I will work on it.


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