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Autism - Support Across the Spectrum Autism - Support Across the Spectrum

Results??

Posted by on Aug. 26, 2012 at 12:36 AM
  • 8 Replies
I'm just wondering for those of you that are doing the gf/cf diet.. If you saw results, how soon? Weeks? Months? It's been about a month for us and it feels like there is no difference. Also.. How long after diagnosis did the disability stuff go thru and the therapies start? I'm step parent here so it's hard for me to ask the questions to the right people.. I just feel like we are waiting and waiting :(
by on Aug. 26, 2012 at 12:36 AM
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KatyTylersMom
by Silver Member on Aug. 26, 2012 at 2:18 AM
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With my son we saw results within a month.  For him it wasn't some miracle of sudden speech or anything, but his constipation which had been incredibly bad even with Miralax was GONE.  Never to return.  He had a lot more energy - it used to be that he'd wake up looking tired, nap hard for 2-3 hours and still look tired, and go to bed exhausted.  Once we swapped his diet he'd wake up rested, nap still (because he was only 18 months) for an hour or two max, and then charge around until bedtime.  His doctor called this an "opiate effect" where the gluten and casein were acting like drugs making him sleepy and lethargic.  Once they were removed he had a lot more energy for his therapies and was able to be more tuned in. 

That being said, we've seen much more improvements while on the diet when adding in other supplementation and vitamins/prescription meds.  I don't know how much those would have been able to help him if we had not partially healed and prepared his gut to be able to absorb the nutrition and meds. 

With my daughter who is not diagnosed autistic but does have a speech delay and some ADD tendencies at 3.5 years old, we didn't see a huge change from the GFCF diet.  BUT when we let her have a roll of bread as a treat she had diarrhea for TWO WEEKS straight so yeah, no more cheating on the diet for her!  I guess my take on it is even if you don't see a huge difference, stick with it and try more things in conjuntion with the diet - just because you've removed some of the causes of the inflammation doesn't mean you've repaired and restored your kiddo's system.  Blood tests for things like levels of carnitine (which are often low in autistic kids) can be run by any doctor who cares to look at what might be going on with your kiddo on a biological level. 

The book "Healing Our Autistic Children: A Medical Plan for Restoring Your Child's Health by Julie A. Buckley" is a great resource that lets you as a parent educate your kid's pediatrician so that they can help you make informed decisions on what paths to treating your individual kids' symptoms and issues.  Not every treatment is the magic bullet for you kid but by progressively working to heal the gut, get nutrition on board, correct imbalances, and eliminate toxins you can see real improvements.  We have only been treating our son for about 4 months, he's been GFCF for 9 months, and with every new addition we see changes which tell our doctor which treatment to try next.  Keep at it! 

twins0506
by Holly on Aug. 26, 2012 at 9:43 AM
I seen results in my boys within 2 weeks. Some will say 2 months, but everyone is different. I say give it another month or so and if you still don't see anything most likely it isn't working. The diet doesn't work for every child/person.
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MomOfOneCoolKid
by Gold Member on Aug. 26, 2012 at 9:47 AM

i started in april, just starting services now.

the thing with services is, for me and my son, they give you guidance, which at first i would make a face and thought, "how is that real help?"

 

but it is! The truth about services is that they guide you, but YOU will be your child's therapist

 

unless you are lucky enough to get 32 to 40 hours of ABA, then its you and a therapist working together at the same time

MamaCher09
by on Aug. 26, 2012 at 11:32 AM
Well I read that our public school system has a program with in-home ABA that is free to families with a diagnosis.. So that should help a lot I'm sure. My SS was diagnosed in March and he has been doing about 20 minutes of speed therapy a week but they told us that there would be parenting classes and in-home visits and we haven't seen any of that. My fiancé, and I would kill for some guidance cause right now I feel like I'm just baby sitting and not helping him at all


Quoting MomOfOneCoolKid:

i started in april, just starting services now.


the thing with services is, for me and my son, they give you guidance, which at first i would make a face and thought, "how is that real help?"


 


but it is! The truth about services is that they guide you, but YOU will be your child's therapist


 


unless you are lucky enough to get 32 to 40 hours of ABA, then its you and a therapist working together at the same time


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letstalk747
by Silver Member on Aug. 26, 2012 at 11:46 AM

 true

Quoting MomOfOneCoolKid:

i started in april, just starting services now.

the thing with services is, for me and my son, they give you guidance, which at first i would make a face and thought, "how is that real help?"

 

but it is! The truth about services is that they guide you, but YOU will be your child's therapist

 

unless you are lucky enough to get 32 to 40 hours of ABA, then its you and a therapist working together at the same time

 

KatyTylersMom
by Silver Member on Aug. 26, 2012 at 11:49 PM
2 moms liked this

I will say this:  the squeaky and persistent wheel gets the services.  Call every day.  Get names and ask for people by those names so they know it's you AGAIN.  If your local service provider/regional center is stalling or jerking you around, find an advocate (free, kind of like an autism lawyer) and they will give you buzzwords if you will that will let the folks you are dealing with (be they school or state) know that they can't push you around.  I'm not saying they're bad people but again, they have a lot of kids to get services to, YOU being pushy gets YOUR kid services faster:) I find that being unfailingly nice, firm, and persistent has gotten through about 50% of the red tape, being pushy and no-nonsense with advocate help got the other 50%.

MamaCher09
by on Aug. 27, 2012 at 12:35 AM
Thank you!
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kajira
by Emma on Aug. 27, 2012 at 1:05 AM

for us, the diet and vitamins took about 6 months to see a clear difference.

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