Biomedical Update: Leucovorin

Kai has been in great spirits for the past few weeks. He rarely angers, and seems more flexible. Beyond that, his communication skills have taken a leap forward as he responds much more often and quickly to our attempts to interact with him. And I have noticed increased communication when he is with other kids as well.

His school noticed the change as well, even telling us the other day that he is “a completely different Kai.”

So the question is why?

I have a couple of theories.

Of course, the therapy that Kai receives at school and with private therapists has to be a factor. But the timing and dramatic nature of the change indicates that there may be something else at work.

As mentioned before, we changed psychiatrists and medications earlier in the year. The new psychiatrist currently has Kai on a combination of a non-stimulative ADHD drug, along with a small amount of Resperidone. The amount of Resperidone is apparently small enough not to trigger the side effect of massively increasing his appetite that we saw before under a higher dose. And I believe that the reduction in anger and increase in focus is, in part, due to the medication.

But I think there is also something else having an impact.

A few weeks ago, we started a new biomedical treatment after tests suggested by our DAN! doctor indicated that Kai was deficient in folate receptor antibodies.

A relatively new study indicates that low folate levels in the brain are common among children with autism, and that this condition can result in an array of neurological dysfunction.

The treatment for this is a very high dose of folinic acid in the prescription form leuvocorin, and a dairy-free diet. In this early-stage research, the children treated with leucovorin had significantly higher improvement ratings over a mean period of 4 months than the control group in verbal communication, receptive and expressive language, attention and stereotypical behavior.

Kai has shown improvement in exactly those areas, and the timing of it ties more closely with the introduction of leucovorin than with the traditional meds. And so, I believe that the leucovorin is having a big impact.

I am usually not one to say that about any of the treatments we have pursued. Usually I am cautious about attributing improvement to new treatment we have pursued. But in this case, I am encouraged.

Of course, we will keep monitoring it. And I will try to keep you posted.

Budding Pharmacist?

My son is a collector. I recently wrote about his introduction into his grandfather’s hobby of collecting tins. More recently, Kai has taken an interest in accumulating pennies. In addition to these, he has his collection of Ugly Dolls.

But perhaps his most eclectic collection is his stash of used medicine containers.

We have been doing biomedical treatment with Kai since shortly after he was diagnosed with autism. As such, he gets a steady dose of supplements including vitamins and minerals, fish oil, and other natural supplements, in addition to some prescription drugs. These treat things like gut issues, food sensitivities, immune system deficiencies, neurotransmitter malfunctions, and yeast overgrowth, among others.

We mix most of these with apple sauce and give it to him at various times of the day.

Lately, he has become more interested in preparing the supplements. He is particularly excited when a container is running low. When it runs out, he takes the empty container and puts it on a shelf in his bedroom.

He is amassing quite a collection. (The supplement containers shown here are in front of Ugly Town that his grandfather in Japan made for him the last time he visited).

This week, we had another appointment with our DAN (Defeat Autism Now!) doctor. For the first time, Kai initiated a conversation with him.

“Um, excuse me,” he said. “Can you give me more medicines?”

He asked the doctor for different supplements, not because he enjoys taking them, but because he wanted new containers for his collection. And when the doctor happened to oblige with recommendations for a few new supplements, Kai was happy.

When we got home, Kai opened his “medicine store.” He took all of the new supplements and arranged them on the kitchen table. He didn’t want to go to bed; he wanted to keep playing with all of his medicines.

Hmm, I wonder: Is this how most pharmacists get started?

Do We Need to Choose Sides?

Baseball fans growing up in Chicago are taught early on to choose sides. You have to be either a Cubs fan or a White Sox fan. And you can’t simply like one team; you have to also hate the other with as much passion.

In the autism community, there seems to be much the same dynamic. When it comes to therapy, you have devout ABA proponents, and those that swear by Floortime. Each passionately declares their method to be the best.

The debate between conventional versus alternative medicine is even more heated.

At the suggestion of a psychologist who recently evaluated our son, we consulted a psychiatrist about putting our son on medication for attention deficits and anxiety.

We told the psychiatrist that we had been seeing a DAN (Defeat Autism Now!) doctor since our son was first diagnosed with autism. We showed him a list of all the alternative-medicine supplements that our son is on, and told him of the progress he has made. The psychiatrist said that he thought the supplements were worthless. He said that there is no scientific research to substantiate any of the purported benefits of this alternative approach.

It was not a surprise that he would feel this way. With his training and background in conventional medicine, that is to be expected, I suppose. I actually appreciated the doctor’s frankness. But, when he went on and on about his disdain for what he called “quack” medicine, it got to be a bit much.

A few days later, I spoke to someone at our DAN doctor’s clinic and told her that we were considering medication. She said that while we might see some short-term benefits, she had concerns about longer-term usage. She said that many of these drugs have not been tested for use on children.

So, here we are, both sides critical of the other. Remarkably, their respective criticisms are similar – lack of appropriate research.

I wish there was a treatment that everyone would agree on, one that has been “proven” to be effective. Alas there is not. And so we are left with a conundrum. Do we continue with the alternative approach or do we begin more conventional medication?

When it comes to baseball, I am a bit of a rebel in that I cheer for both Chicago teams. I figure that when your two hometown teams have had only one World Series championship between them in the last 94 years, it doesn’t make sense to cut your chances in half.

And so it is with our approach to autism. I don’t know if overcoming the harmful effects of autism is as futile as hoping for a Cubs championship, but I don’t want to reduce my chances.

We have done both ABA and Floortime. And had success with both.

And while I don’t like the attitude of this psychiatrist, I don’t want to rule out the treatment he has to offer. But that doesn’t mean that we will necessarily quit the alternative approach. We may do both.

Whatever we do, I hope we have more success than the Chicago baseball teams are having this season. Sox? Cubs? Sigh. It’s already “wait ‘till next year” time.

The Medication Question

At some point, many parents of kids on the spectrum are faced with the decision of whether or not to put their child on medication.

Our son has made a lot of progress but still has attention deficits and anxiety issues that may be hindering him from staying more focused at school. Can medication help?

Until now, we have taken the biomedical approach, using mostly natural supplements, and therapy, to try to make inroads in this regard. But one of the recommendations of the recent psychological testing that we had done is to consider medication.

Turning to drugs is contrary to my natural tendencies of avoiding the use of medication unless absolutely necessary. My personal belief is that drugs combat the symptoms but not the source of whatever problem you are treating. And so, I have been reluctant to turn to medication with my son.

I was hoping that the biomedical treatments would help address the core issues of my son’s disorders. I wanted to use a therapeutic approach to teach better behavior without the use of drugs.

But I see every day that my son continues to have attention deficits. When he does homework, he has difficulty staying on task. It is a challenge to get him to listen and follow directions.

And so, if an expert is suggesting that medication may help, we need to seriously consider it.

From what I understand, you can often tell fairly quickly whether or not a medication is having a positive or negative effect. So, a part of me thinks that it couldn’t hurt to try, just to see if it makes an impact.

Still, it feels like a big decision. And although it is not irreversible, it feels like we have come to a major fork in the road. We will ponder our choice carefully.

Alternative Treatments for Autism: No “Proof,” Just Results

We have probably tried as many different alternative treatments for our son as anybody. Most of these are shunned or outright scorned by conventional medical practitioners.

Since the time Kai was diagnosed with autism at age two, we have had him on a gluten-free/casein-free diet, and have been giving him a battery of supplements as recommended by a DAN (Defeat Autism Now!) doctor. We have also tried hyperbaric oxygen therapy, biofeedback, and Chinese medicine. Currently we are having him checked out by an Applied Kinesiologist.

Have they helped?

Our son has made tremendous progress. But, the truth is, we cannot say with certainty that any of the things we have done have contributed to this.

A scientist who is doing research would surely criticize our approach. There are too many variables; we are doing too many different things at once to know what is working and what is not.

And, that is all true, and it is valid criticism if we were doing this for scientific research. But, we are not. We are trying to help our son to have the best chance at having a good and productive life.

Time is of the essence. I believe that the most change in people occurs when they are still young. Early intervention and action are critical. We do not have time to wait to see if something is working or not before moving on to the next item. We need to act now.

Is this the act of so-called “desperate parents?” Perhaps. But, I really do not care if I am called desperate when it comes to our son’s future.

What I do care is that my son could not talk and did not respond at all when he was diagnosed. He was considered to have a severe level of autism. And now, he speaks well, has revealed an exuberant personality, and is showing his intelligence as he is doing work well beyond his grade level in school.

Did our alternative approach really make a difference, or would he have turned out like this anyway? No one can say for sure. But, what I do know for sure is that I would not have wanted to chance it.