Bennett Children's Soy Journal

Welcome to our journal! Ciara and Hunter both have Sanfilippo-A, Ciara is 10 and Hunter is 8 years old. There is a new research study going on in Poland involving Genistein from soy extract. I talked to the kids' doctor and to Dr. Kurtzberg to see what they had to say and they both said that they didn't see any reason why Ciara and Hunter couldn't start taking the soy pills. Here is what the Professor in Poland has to say about the study:


Regarding our work on genistein as a potential drug for treatment of MPS, we have now new results, which indicate that in cells (fibroblasts) from MPS patients, which were cultured in vitro and treated with genistein, levels of mucopolysaccharides not only was not increased, but decreased significantly. We assume that this could be the effect of cell divisions (mucopolysaccharides were diluted when their synthesis was impaired) and residual activity of a deficient enzyme. These results encouraged us to initiate experiments on animal model - we have MPS IIIB mouse available. I hope we will start experiments in a few weeks. Obviously, from the point of view of patients the problem is time. Even considering that animal experiments are successful, they must be conducted at least for a year or so, and then clinical trials are necessary. Genistein is not available as a drug now. However, what we found in our
cell culture experiments is that soy extracts, enriched in isoflavones(not soy proteins !!), work also quite well. Thus, one could perhaps try to use these extracts for treatment of MPS patients. I would not expect any serious side effects caused by these natural products, but obviously nobody can be sure. Considering concentrations that work in our in vitro experiments, similar genistein
(soy isoflavone) concentrations could be potentially achieved in a body when administered at the dose of 5 mg per 1 kg of body weight. Well, this perhaps (theoretically) will not be as efficient as pure genistein could be, but at the moment nobody can propose anything more - further studies and clinical trials are necessary to test the pure compound. One more interesting thing is a recent discovery that genistein can cross the brain-blood barrier in rat. We suspect this previously but did not have a proof. Now we know that the efficiency of crossing is about 10BR>but this still should be sufficient to observe effects on synthsis of mucopolysaccharides in neurons. This gives a hope that Genistein might be efficient in treatment of not only somatic but also neurological symptoms of MPS.


LATEST NEWS: IN OCTOBER 2005 THE PROFESSOR IN POLAND STARTED HIS STUDY ON SANFILIPPO CHILDREN SO I WILL KEEP YOU ALL POSTED ON WHAT HAPPENS!



These soy pills are very expensive and we have to buy two bottles, one for Ciara and one for Hunter, so if anybody can help out, please let me know, we would really appreciate all the help we can get. For those of you who are interested, here are a link to what I am talking about:

Life Extension Website.

If you would like to help out with the cost of the soy pills, you can mail us a donation at our address at the bottom of our journal, or you can make one on-line using your checking account or credit card thru Paypal by clicking the "Donate" button below:
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Journal

Sunday, May 21, 2006 9:51 AM CDT

I am so sorry that I haven't updated sooner, it has been way too long! Ciara and Hunter were off of the soy for about 3 months, they were both having some problems so I stopped giving it to them to see if it made a difference. Ciara's seizures were coming more often and several in a 2-3 hour period and they were very severe. Hunter was screaming and crying for two months, almost 4 hours a day. Ciara has been on Tripleptol for her seizures for two months now and she seems to be doing much better. Hunter has finally calmed down for the past 2-3 weeks and it is wonderful! So, I started giving them the Genestein again 3 weeks ago and I have noticed improvements again. Ciara is more alert and happy and Hunter is all over the house again. He is having a very hard time walking because his right foot is turning inward a lot, he basically is walking on his tip toes and the side of his foot, preety much just on the baby toe so he is falling alot and crawling everywhere around the house. But, he is still going everywhere and getting into every thing! Hunter turned 8 in March and Ciara turned 10 two weeks ago. We were always told that Ciara wouldn't make is past her 10th birthday because of how severe she was, but now we are being told that she could be with us another 10 years and that is wonderful! The problem that we have right now is that apparently we made $56 too much last year so they stopped the kids' SSI at the end of December so that is a lot of money we aren't getting anymore. On Friday I got a letter in the mail saying that the kids no longer qualify for Medi-Cal because of the SSI and Kaiser doesn't pay for most of Ciara's feeding supplies each much so now that is several hundred dollars each month that I will have to start paying. John is going to nursing school so he isn't working much and I am almost out of the soy pills so it will be a while before we can buy another bottle. I have been trying to fight the SSI and Medi-Cal but last time this happened it took a year to get everything straightened out. I don't understand how we can make under $30,000 and not qualify when we always made more over the years and never had a problem. Anyway, it has been a long, hard 5 months since I updated last, but now the kids are doing much better and I will try and update again soon. Thank you all for checking in!

Hugs,
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Hospital Information:

The Bennett Family
P.O. Box 1423
Ione, CA 95640

Links:

http://www.caringbridge.org/ca/bennettboys   Our Daily Journal
http://www.mpsforum.com   MPS Forum - A place to MPS parents to talk
http://www.caringbridge.org/md/myjesse/   Jesse is also on the Soy treatment

E-mail Author: mps3mom@hotmail.com

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