Leucovorin (Folinic Acid) Trial Update: 4 Months In — Speech Progress & Side Effects

Leucovorin Trial Update: 4 Months In

It’s been a few months since my last blog, and I was hoping to be posting more regularly.

The truth is, it’s been a very busy and challenging time for us. Adam hasn’t been in school since before Christmas, as his educational setting unfortunately had to close. That brought a lot of disruption, not just for him, but for all of us.

We did try to set up a home-based ABA programme, but it didn’t work out the way we had hoped. I’ll go into more detail about that in a future post, because I still strongly believe in ABA — we just need to find a way to make it work better for Adam.

For now, I want to keep this post focused and share an update on how the Leucovorin / folinic acid trial is going.

Where We Are Now

We’re now nearly four months into the trial.

The dose has been increased gradually each month:

We are having to buy folinic acid tablets privately on prescription, and they are costing quite a lot — around £220 for 60 tablets, which is roughly a month’s supply at the current dose.

Getting Adam Ready Before the Trial

Before we started leucovorin, we had to get Adam ready and support the basics first.

This meant making sure he was taking:

• a multivitamin
• key minerals such as magnesium and zinc
• higher dose Vitamin B12

A week before starting leucovorin, Adam also started a higher dose of B12 — 2500mcg of methylcobalamin, which is an active form of B12. He continued taking that for nearly three months.

Our paediatrician also told us to make sure he was not taking folic acid or dairy, as both can work against folinic acid.

What We Started to Notice

From the moment Adam started taking folinic acid and the higher dose of B12, we started to see his speech open up.

In the first month, he seemed to become more spontaneous. One example was going to the toilet by himself, which felt like a meaningful change.

He also started saying a few new words and vocalising a lot more.

Now, after nearly four months, he is repeating many more words. They are not perfect, but we can clearly see that he is really trying to talk.

The Difficult Side Too

There have also been some negative effects.

We were told that increasing methylation could make Adam more:

• hyperactive
• agitated
• aggressive
• emotionally unsettled

We experienced all of these effects at different points.

By month three, it became clear that we needed to adjust things rather than just keep pushing forward.

The Adjustments We Made

At month three, we changed Adam’s multivitamin and B12 to a methyl-free version.

He is now taking hydroxocobalamin, around 1200mcg per day, split as two 600mcg doses.

It is still a bit early to say whether this has made a big difference, but he does seem to be less hyper with this form of B12.

This has reminded me again that support is not always about adding more. Sometimes it is about finding the right form, the right dose, and the right pace for the child in front of you.

Other Support We Added

We also added a few other targeted supplements into Adam’s routine:

• phosphatidylcholine
• glutathione

These could also be having a positive effect, especially with his speech and overall regulation.

It is hard to know exactly what is doing what, because several things have changed over the same period. But overall, we are seeing enough to feel that something positive is happening.

Where We Are Now

We are still very much in the middle of this journey.

There are encouraging signs, especially around communication, but also clear challenges that need careful management.

Nothing about this feels like a quick fix. It feels more like slowly supporting a system that has been under strain for a long time.

We will continue monitoring closely, adjusting carefully, and working with our practitioners.

That’s it for today. Until next time.

Zee