Genistein Isoflavone

Genistein – A soy Isoflavone

I have some parents of newly diagnosed Sanfilippo (MPS III) children calling me recently about the new experimental substrate reduction therapy by using genistein.
Feel free to email me for more info on this topic if you wish to know more than what I written here.

Here is the theory behind it.

Genistein theroy

A new approach that is being developed by researchers in Poland is to look at inhibition of the expression of the genes coding for enzymes involved in GAG synthesis. Recent research suggests that theexpression of these genes may be controlled through pathways dependent on oestrogen receptors and protein tyrosine kinase. Work done in Poland on cell cultures has shown that genistein (an isoflavenoid which has an oestrogen-likestructure ) inhibits GAG synthesis. It is postulated that this occurs as a result of modification of gene expression by modification of the oestrogen-dependent pathway of signal transduction.(Poland has just recently completed a one year trial in children that have seen very good success)

The recommended doseage for this is 5mg of genistein isoflavone per 1 k. of body weight. When you buy Soy isoflavones, there are 3 isoflavones usually present in the mix. The actually mg. dose of the genistein is the one we are concerned with. (I personally use Life Extension’s Brand of Ultra Soy extract)

With this said, Jesse has been on this Isolfavone for 2 years now. (before human trials started) He started in June 2005. He has not regressed one bit in two years. We have actually seen physical strength improve greatly, we have seen endurance get better, he also starting saying a few of his old words again, and hearing has improved. I do use some supporting vitamins. Things like extra Tyrosine and Zinc. Other than that, Jesse’s vitamin regiment remained the same until the past year. I decided that since we have not seen any regression, we will now try to rebuild or revive brain cells. Goals are to regain speech and improve cognitive function. We are seeing improved cognitive function in several ways with new supplements over the past year.

I will also add a note of just my opinion and observation. There is not enough evidence or study on this yet, but I can personally say that the children who are taking genistein and pharmacological drugs such as behavior meds, seizure meds etc, are not seeing quite the same noticeable improvement. I still believe that the genistein is breaking down GAG’s in these children, but my personal belief is that the drugs are causing premature regression. Genistein is not going to stop a side effect a drug being given! Our children store things that they shouldn’t since they don’t break down things properly in their system. I have seen so many children taking drugs like clonodine, seroquel, antihistimines, anti –depressants and so on, suffer adverse reactions in behavior or sleeping, some neurologically side effects with balance, chewing and swallowing, walking in general. Most of the kids when weaned off the meds will gain those skills back, but unfortunately the same behavior or problem that they went on the med for to start with comes back too.

Our philosophy is to nutritionally get everything in balance and to feed as much organic food as possible. (keeping away from food additives, preservatives, colorings etc.) We also have cut out all dairy and limited wheat and gluten over the years. By doing al this, Jesse is basically as normal as he can be for having MPS III. He sleeps well, walks wonderfully, runs in his awkward style. He can chew foods easily and swallow well, he drinks from straws or regular cups, and his behavior is very good when we take him out to places and here at home. He does understand routine discipline, routines are important here when it comes to morning routine of breakfast and teeth brushing washing up etc. He is quite easy to do all of these things with. We also keep a routine of do and don’ts, which he does understand. Many people think children with Sanfilippo are not capable of learning discipline. But I truly feel that as long as discipline is done on a level that they can understand and done on a regular basis, they do learn to know right from wrong. They may learn reasoning of safety issues on the street etc. but they can learn. (discipline is done, not by the physical age they are, but the cognitive age.. 1-2 years even understand the simplest of routines and disciplines) My Jesse does too, and believe me, it does make life more manageable in the life of MPS. Don’t underestimate the intelligence of an MPS child.

Okay this is a topic for another day! But genistein has given us much hope and stopped the regression these past two years for our son. If something else should come about in a year or 5 years from now, just maybe he will still be stable enough still to try something like gene therapy when and if it does comes about. At least for now he is stable and still learning little things, and not going backwards!

Praise God for that!