Austin and Autistic - Could use some input

[lemonlime22]

Originally Posted by Tondo1984

Just be wary... I don't think risking death is a smart idea, and this is why this treatment is not approved by the FDA. Boy with autism dies after chelation therapy - Health - Mental health - Autism: The Hidden Epidemic? - msnbc.com

Anyway, yes there are lots of people who move here specifically for services for kids with ASD, so there are lots of support groups within each district where you can find lots of resources.

Actually the chid you mention died from medical error--a nurse gave the wrong drug.


"More on the story of the 5-year-old autistic boy who died during chelation therapy last August: A chelation specialist working for the Centers for Disease Control and Prevention has determined that the boy died because the doctor administered the wrong chelation agent. "It's a case of look-alike/sound-alike medications," said Dr. Mary Jean Brown, chief of the CDC's Lead Poisoning Prevention Branch."

Wrong drug caused chelation therapy death

[masalamomma]

Originally Posted by Tondo1984

There are many autism resources here in Austin, with several good districts for kids on the spectrum (Leander, RR, Pflugerville, etc).



I'd stay away from anything DAN! though, as they promote all sorts of biomedical therapies that are in NO WAY supported by the research, and could steer you to treatments (i.e. Hyperbaric chamber, chelation, etc. ) that will be very costly but have no evidence of efficacy.

Good luck! Keep hope up, and remember that you can be your child's best therapist during each routine of your everyday life.

I totally see what you are saying - I simply wanted a ped experienced with Autism. The one I had before was worthless. When I told her of my son's issues at his 18 months and 24 month appointment (not speaking at all, weird behavior), she could have cared less. It was me who diagnosed him as autistic from the start and sought help - not her. That is disappointing.

And the DAN doctor I found is super reasonable and let's me make all the decisions. So far I only give my son cod liver oil (even the Neuro recommended), a probiotic powder, and then a B12 shot twice a week.

I would not even have tried any of this biomed stuff if my son hadn't had such a dramatic response to going gluten/casseine free. I did it just to try because I was feeling helpless and impatient to do something while he was being assessed and diagnosed. And it was absolutely shocking and amazing how different a kid he was after one week of taking all the milk, cheese and gluten out of his diet. So I am a firm believer in at least trying a biomedical approach, within reason of course. It may not work.... but then it might.

I will look more deeply into Leander, as that is the area I want to live, thanks for the reference.

[masalamomma]

I have never heard of this chelation therapy. I know nothing about it. All I do know is that there is no "one size fits all" approach to treatment of anything really, so I take this one day at a time. My DAN doctor did request a stool sample for testing for toxins in his system, but I have not heard anything back on it yet.

[Tondo1984]

Originally Posted by masalamomma

I totally see what you are saying - I simply wanted a ped experienced with Autism. The one I had before was worthless. When I told her of my son's issues at his 18 months and 24 month appointment (not speaking at all, weird behavior), she could have cared less. It was me who diagnosed him as autistic from the start and sought help - not her. That is disappointing.

And the DAN doctor I found is super reasonable and let's me make all the decisions. So far I only give my son cod liver oil (even the Neuro recommended), a probiotic powder, and then a B12 shot twice a week.

I would not even have tried any of this biomed stuff if my son hadn't had such a dramatic response to going gluten/casseine free. I did it just to try because I was feeling helpless and impatient to do something while he was being assessed and diagnosed. And it was absolutely shocking and amazing how different a kid he was after one week of taking all the milk, cheese and gluten out of his diet. So I am a firm believer in at least trying a biomedical approach, within reason of course. It may not work.... but then it might.

I will look more deeply into Leander, as that is the area I want to live, thanks for the reference.

I understand for sure- I know it's difficult to get a PED that will listen!

My only concern with all the "toxins" talk, stool samples, shots, diets,etc. is that lots of people are making all kinds of money on them, but the research is just not supportive of it. If a child has an allergy, that's one thing, but so many people just get on the diets hoping they will be miracle agents, but that's just not the case, and the research shows no link in diet and increasing skills or decreasing problem behavior.

The DAN doctors often work where they sell all of this, so it's in their best interests to tell you that it's medically necessary. I am always skeptical till I can see the data.

[masalamomma]

Originally Posted by Tondo1984

I understand for sure- I know it's difficult to get a PED that will listen!

My only concern with all the "toxins" talk, stool samples, shots, diets,etc. is that lots of people are making all kinds of money on them, but the research is just not supportive of it. If a child has an allergy, that's one thing, but so many people just get on the diets hoping they will be miracle agents, but that's just not the case, and the research shows no link in diet and increasing skills or decreasing problem behavior.

The DAN doctors often work where they sell all of this, so it's in their best interests to tell you that it's medically necessary. I am always skeptical till I can see the data.

I am one that always needs proof as well. But I am willing to try things like vitamins and supplements, because they cannot hurt him anyway. If they work, great. If they don't, then lesson learned and move on. The B12 shots - I pay $50 for a month supply. Not a big amount. As for changing his diet, noone made any money off of it, except the agricultural industry since I buy tons of fruits and veggies now. Its a better diet for all of us anyway.

I would not have thought to try the whole GFCF thing, but it was recommended to try in Dr. Sear's book on autism, and since it couldn't hurt I figured what the hell? Mind you, my son drank a half gallon of milk daily, and when he wasn't drinking milk he was eating cheese sticks or mac and cheese. His diet was like 80% dairy based. And if you had seen him before the diet change and then after....... absolutely amazing. Before I could not even get him to look me in the eyes, and he was like a wandering zombie. After, his personality came back and it was like a fog was lifted. I still am so grateful that it worked.

I am not trying to convince anyone that this diet will work 100% of the time, I am just saying that for my kid.... it most certainly did.

[austinnerd]

Originally Posted by masalamomma

But I am willing to try things like vitamins and supplements, because they cannot hurt him anyway. If they work, great. If they don't, then lesson learned and move on.

Careful with that assumption. From my own personal experience I know that there is some ingredient found in several multi-vitamins (could be binders, could be one of the vitamins themselves) that cause me to be very sick (constant feeling of mild nausea, extreme fatigue, mild headaches). I'm obviously reacting to something but I've never taken the time to investigate exactly what it is (I just don't take multi's anymore). Point being that just because it's a vitamin don't assume that the worst case scenario is simply it being non-affective. It took me a couple of years to figure out that that was the cause of symptoms.

[masalamomma]

Originally Posted by austinnerd

Careful with that assumption. From my own personal experience I know that there is some ingredient found in several multi-vitamins (could be binders, could be one of the vitamins themselves) that cause me to be very sick (constant feeling of mild nausea, extreme fatigue, mild headaches). I'm obviously reacting to something but I've never taken the time to investigate exactly what it is (I just don't take multi's anymore). Point being that just because it's a vitamin don't assume that the worst case scenario is simply it being non-affective. It took me a couple of years to figure out that that was the cause of symptoms.

Actually, even with vitamins and supplements Dr. Sears recommends you only start one at a time and wait a week or two to make sure there is no adverse reaction. But thanks for the input.

[fightingirish2321]

Our son is 9 and there is a chance we may be moving down to Austin. Seems to be a consensus from what i read that Leander is a pretty solid choice. I assume the surrounding areas for that district as good as well from a living standpoint?

[contactkvr]

How did you recover your kid from autism. i have a 4.4 year old with autism and i am really looking for guidence to help my child.

Originally Posted by lemonlime22

I'm sorry about your son. I know first hand how devastating an autism DX can be.

I think it's district dependent. In my school district, it depended how severe your child is, as to which group your child is placed. Mine was dxed (privately) as moderate ASD.

If I remember correctly, the program my son qualified for (at 3 years old) involved speech, discreet trial (how that differs from ABA, I'm not sure) and very little OT, and no PT.

I chose not to do a school program, and the school district provided speech and OT a couple times a week. I believe that at 6 they are "mainstreamed" into the general population.

My son is now recovered from autism, so he's in a regular preschool at 5. He no longer even qualifies for speech from the school system, which is pretty amazing since he was completely non-verbal when they first evaluated him.

Feel free to DM me.

[chuck_steak]

Easter Seals here in Austin helped my son immensely. they offered speech therapy, physical therapy, occupational therapy and indoor swimming lessons. In addition to the ECI (early childhood intervention) classes offered at the school you might want to look into Easter Seals for your child.