CuringAutismBlog

Hi folks,
I am digesting a lot of new information that I have gleaned over the Internet, about how various people are doing this. What is so encouraging is that there ARE plenty of recovered children. Why not mine?

I am moving Mike to a low-protein diet, slowly. This is really key, and I haven't been enforcing it. By low protein, I mean 20 g of protein a day. That's not very much! It means no meat, basically, and getting the protein from bread and beans at one meal a day. The rest of the meals are fruit and non-starchy vegetables.

I also am going to send his samples out for testing shortly, now that we have the supplements suggested by Dr. Mullan.

Hi folks,
Another mother following the Yasko protocol with CBS issues emailed me through the blog. Here name is Gina. She was addressing my frustration with not getting over the increased CBS enzyme roadblock yet. I am reprinting what she had to say, with her permission:

Hi Phyllis,

Yasko used to use Nature's Way products exclusively. You can get many of the supplements for a reduced price through
www.iherb,com and
www.ecolifeus.com

It is really helpful to run a Urine Amino Acid (UAA) and an Organic Acid Test (OAT) or a Metabolic Analysis Profile (MAP) test together. I've been following Yasko's program for 2.5 years now and my kids are doing just great --- but I rarely run tests through Yasko. My insurance will pay for the UAA, OAT, and CDSA (I have Blue Cross Blue Shield Alliance Select) if I run it through Great Plains Laboratory in Kansas so I run my tests there instead. I interpret the results on my own. Yasko makes it pretty easy by guiding us through the BASICS suggestions on her board. I've tried to work with local doctors but Yasko is so far above their heads that I end up doing all the teaching. Now I just visit the doctor and tell him which tests I need, he writes the prescription and I'm on my way. It's so weird!!

A huge part of the CBS puzzle is diet. Have you checked out the PKU diet? Yasko says to check it out - she shows a set of results in one of her dvd's where the ammonia was high yet with ammonia rna and a very very low protein diet, the kid was turned around in a week. ((PKU is fruits and vegetables)). You may very well have diet under control, but I feel that the importance of diet can be overlooked when we think of supplements bypassing the genetic mutations. Nothing bypasses the CBS C699T or A360A mutations. Especially if you throw a MTHFR mutation in there, it's important to watch the proteins in the diet very very closely. http://pku.com/

One of the Rescue Angels I spoke with recommended the Quercetin, Butterbur and L-Carnitine to reduce the ammonia. I've also read and heard Yasko mention these as well, though I'm surprised she hasn't added them to the CBS protocol. I've found them to be helpful, but since they aren't part of her protocol, it is important to remember that one must make his/her own decision as to whether or not to use these supplements to reduce the ammonia. Ammonia = Histamine. When we control the ammonia, the liver is no longer overwhelmed and everything else seems to fall into place.

As to how your son will respond to the supplements, is difficult to determine. Quercetin is better handled by those who are more COMT -/- as they will tolerate and need more methyl donors. Butterbur is a better choice if one is more COMT +/+. L-Carnitine is part of the mitochondrial support cocktail, and also recommended for those with ACAT1-02 mutations, and my kids really thrive on it. If in doubt, start with a small amount and work your way up. Two of my children tolerate methyl donors really well, one does not, so knowing this helps me decide how to proceed.

I'm actually treating 4 children as well. My middle 2 are the most affected --- interesting to note that they are the ones with the most vaccines. I have a 2 year old unvaccinated baby who doesn't have any problems at all. Haven't tested her genetics yet, but since the others have a minimum of 15 mutations, I can't imagine her genetics are impressive ;o) Boy oh boy do I hate those vaccines.

I've probably rambled on a bit too much, I just felt really bad when I read your blog. I think there is a great deal we can do with diet alone for ourselves. I really like the rna formulas, but they are not the only way to go. It's just that in many cases, there are cheaper supplements that will do the trick. I swear by Yasko's genetic analysis and recommendations, and I'm so glad I found her.

Gina

After my conversation with Dr. Nancy Mullan yesterday, I am much encouraged. Turns out that Mike's urine toxic elements test did show high levels of metal excretion, so he IS in detox. I was just fooled because the sample had been an early morning one, and that meant the creatinine levels were high, and that skews the graph. But if you are an MD you can figure these things out. Yay for Dr. Mullan!

She is prescribing a number of adjustments in his supplementation, and then after a couple of weeks on those, a round of major testing to see where we are.

Apparently I goofed in not getting a urine amino acids test right off the bat, to use as a benchmark. So we don't know that he actually has high ammonia. We only know that he has the gene for it. So I will back off a bit on the ammonia treatment before these tests.

I will post details on the supplements when I get it all figured out.

Meanwhile, Mike is getting from place to place at Webster Groves High School and understanding the material, but NOT doing the homework. So he is flunking. Yikes. Hopefully this will resolve soon.

Hi folks,
Our long-awaited appointment with Dr. Nancy Mullan is TOMORROW. I am hoping to figure out how to get Mike's detox rolling. I will keep you posted!

I think we are seeing some improvement in Mike's coping with the world. He is functioning at Webster Groves High School, where he is a freshman, and is getting to where he needs to go, and understanding the material given in class. He needs improvement on getting the homework done--hopefully the interim report the teachers sent home about poor grades on the horizon will motivate him to do homework. I am actually beginning to be hopeful that he might have a normal life, at least in some form.

He does appear to me to be bipolar now, with mood swings. Not surprising; it's in the family.

Phyllis

Well, since I am puzzled about the lack of detox for Mike, we will talk to a doctor in California, Nancy Mullan, on Oct. 18 by phone.

In the meantime, I talked to the psychologist at his school, who said Mike is actually doing very well compared to some other kids with Aspergers who entered when he did. He is navigating the hallways OK (the school as 1400 students), seems to know his subjects so must be listening in class, although he is not doing the homework by and large. So that is reassuring. He is not freaking out or anything at the huge change.

I am noticing some bipolar symptoms, usually just cycles to manic and then back to normal that last 10 minutes or less. But a few days ago he had a cycle to depressed that lasted 10-60 minutes, not sure. Pretty soon it was over though, back to normal.

Phyllis