Parent Ratings for Autism from the Autism Research Institute

[Misty]

This was shared on one of my autism groups today so thought I would pass it along here. This chart outlines which treatments parents thought helped their child the most. Everything from meds to special diets are on here.

 

https://www.getmeoutofautism.com/displaysite?urllink=http://www.autism.com/fam_ratingsbehaviorbiomedical.asp

 

ETA: From what I gather, parents were able to choose more than one thing that helped their child. So I don't think that the "removed chocolate" part was done in isoloation. I think that was done in conjunction with removing other things.. And that was just one of the MANY interventions done so the parent checked that off on the checklist. How wonderful would it be if we could see such a great improvement based on removing chocolate alone?:lol:

Edited December 5, 2011 by Misty

[sbgrace]

Interesting. I wish they had put mitochondrial support on there--things like carnitine and coq10. Prescription carnitine (Carnitor) made a huge difference for my son and I know he's not the only spectrum kid with mitochondrial issues.

[rafiki]

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[AmyinMD]

Interesting. I wish they had put mitochondrial support on there--things like carnitine and coq10. Prescription carnitine (Carnitor) made a huge difference for my son and I know he's not the only spectrum kid with mitochondrial issues.

 

My son tested low for both carnitine and coq10 and I've suspected mito issues with him. Carnitine has such an awful taste we have never managed to get the recommended 800mg into him. That is what our DAN wanted him on but I never could get him to do more than 250mg in a day.

 

 

I think we'll be adding P5P to our list of improvements. I see 51% report improvement with P5P on that list. We switched to a mult last week with P5P and in the last couple days my son is finally combining words. It's taking some prompting but we have been working on it for over a year with no success. We see his DAN doctor Friday and I'm going to see if we could give more than we are giving.

 

We also do methylcobamin injections and we try to never skip one. I can see that one definitely helping as well.

[sbgrace]

Amy and Michele--I'm going to answer both of you in one post.

 

sbgrace, I need to schedule an appointment with our family D.O. to discuss the food allergies, gastro issues, suspected EE, and recent spectrum diagnosis.

 

I think they are connected. I know L carnitine helps my hypotonia.

 

Could you help me with what specifically to ask at this appointment?

 

I'm glad you have a doctor who will listen! Low tone is, according to my son's geneticist, always indicative of metabolic issues. The fact that carnitine helps you narrows it down to the fatty acid or mitochondrial related areas I believe. I'm going to link here a post I made quite a while back on a board (mothering board) when my son was finally diagnosed about warning signs of metabolics being behind special needs.

 

The umdf site has a list here of basic beginning labs if these things are suspected. The trick is that even if you get an abnormal result on a metabolic lab it's outside the scope of non-metabolic physicians to interpret and know what to run next in my experience. They are also expensive and leave a medical trail. The downside to not going full on is if you do have issues and later want testing to prove this you'd have to stop medications and supplements that may be helping a lot to get an accurate result on the labs. After my son was formally tested (Cleveland Clinic and then Riley Hospital in Indianapolis) and diagnosed we ran a comprehensive urine from Metametrix--this test here--with an Integrative Medicine MD here. We were actually looking for what was causing major GI stuff but I was shocked when that simple urine lab came back with flags showing mitochondrial and fatty acid metabolism problems and suggesting the same treatments genetics had us on! My point is the metametrix isn't a formal metabolic lab. But it's cheaper (well, our insurance reimbursed us out of network), no blood (those metabolic labs were vials and vials), easy for any doctor to interpret, and no diagnosis following medically.

 

For us metabolic was the tie that brought all my son's varied issues together. I, too, have low tone and it turns out he got his condition from me. I was just less affected. My son's carnitine was low and coq10 had a high turnover but normal levels. His urine was abnormal but even kids with diagnosed mito issues can have normal urine profiles. My coq10 was low and carnitine normal.

 

What I would ask for in your shoes is a carnitine profile (if low you want to know imo), coq10 level, and a urine screen like Metametrix Comprehensive (it's possible Great Plains is as good...I'm just familiar with and partial to Metametrix because it has helped us so much in sorting things out). This sounds like it's worth looking into to me given what you've mentioned.

 

If you do coq10 you want a form from Tischon and epic4health carries their products. Epic4health will give a very good mitochondrial discount and ok'd it for us even though two of us don't have formal diagnosis. Tischon makes a kind that specifically treats mitochondrial issues and is much better absorbed. It's got FDA orphan drug status/is proven in clinical trials. It's not yet prescription/insurance funded in the US though it is in Canada and Europe I believe. So we use Tischon coq10 via epic 4 health and my son takes prescription Carnitor at the top of the range recommended on the umdf site. He eats the adult tablets but I think he's extremely tolerant of taste of medications.

 

My son tested low for both carnitine and coq10 and I've suspected mito issues with him. Carnitine has such an awful taste we have never managed to get the recommended 800mg into him. That is what our DAN wanted him on but I never could get him to do more than 250mg in a day.

 

 

 

Correcting low carnitine did a world of good for my son. Correcting low coq10 did a world of good for me. Is he taking coq10?

 

I wonder if you could find a source he would take somehow because if he's low I'm sure it's affecting him. You might ask on the Parent2Parent mitochondrial boards here for a form that's more tolerable in taste perhaps or hints for giving it. My son is really easy in that regard so I've not had to look for easy to give forms. Epic 4 Health is a the form of coq10 (Tishcon company) given to the metabolic kids I know and they do make things that include carnitine. Another thought is trying acytl-carnitine. It's theoretically absorbed much better so you'd need less and maybe the taste is less. If he can swallow capsules (can he?) I know acytl-carnitine comes in capsules that aren't overly big. I mentioned this but my son eats the tablets they make for adults. If your son could swallow those would be an option too perhaps but they disintegrate/soften very quickly so unless the swallow was quick there might be taste. I found this form that talks about good taste in the reviews. Finally, I think carnitine can be injected. If the doctor could prescribe I'd do it given he's low...he'll feel and likely function better with normal carnitine levels.

 

Given he's low on both of those I'd encourage you to focus on mitochondrial support as I think that would likely make the most difference. Neither of those should be low in a person without metabolic issues. I hope you can find something he tolerates!

Edited December 6, 2011 by sbgrace

[Guest]

This is very interesting Misty, thank you!

[klmama]

From what I gather, parents were able to choose more than one thing that helped their child. So I don't think that the "removed chocolate" part was done in isoloation. I think that was done in conjunction with removing other things.. And that was just one of the MANY interventions done so the parent checked that off on the checklist. How wonderful would it be if we could see such a great improvement based on removing chocolate alone?:lol:

 

Chocolate is very high in copper. People with zinc deficiency can be very affected by ingesting foods high in copper, as it throws off their copper/zinc ratio, leading to irritability and anger. If zinc deficiency isn't a problem, eating chocolate probably won't be, either. If it is, though, removing chocolate can improve mood and behavior.

[Misty]

Chocolate is very high in copper. People with zinc deficiency can be very affected by ingesting foods high in copper, as it throws off their copper/zinc ratio, leading to irritability and anger. If zinc deficiency isn't a problem, eating chocolate probably won't be, either. If it is, though, removing chocolate can improve mood and behavior.

 

Interesting! Thank you!

[Once Again]

Methylcobalamine injections have had a tremendous positive effect on my autistic child. From no speech and pull ups to speaking in sentences and being potty trained in one month.

[Jasda]

Thanks for the information, Misty!