Hope to return blogging soon.

Time has been so short it seems as Jesse as grown older. We celebrated his 16th birthday back in May. What a bleesing it is to have him still here with us. He can still walk, still eat by mouth, and enjoys his toys, though sometimes not appropiately. He has lots of vision issues, and also some pretty bad spinal and lumbar degeneration. We have helped him with his pain from the bone issues, but it took about 3 months to get it right. The vision, we are still working with, but I have a theroy and if Iam right, he will be doing better in the next 30 days or so. So stay tuned and I will be back shortly before June is over to share what has worked amazingly well with his bones and joints and pain issues.





May God bless you and keep you in his care.


Patty

Massage Therapies

Massage Therapy

There are many types of massage therapies being used in rehabilitation therapies.
In MPS diseases and many other diseases, there is a lot of muscular and connective tissue pain happening in the children and adults. Jesse included to some degree. We incorporated Neuromuscular massage therapy and Connective tissue massage therapy into treatments for him. We started 2x weekly with this. Jesse used to have knots in his heel cords. They have been there since he was about 3 years old. No one wanted to do anything about them because he was not having serious issues with toe walking. Well after 2 sessions of massage therapy those knots are gone, and have stayed gone. (he had to put up with these knots for 8 years) We also noticed that Jesse benefits greatly from a more free range of motion as well. Jesse, since getting massages (now only 1 to 2 times monthly) feels wonderful overall, and rarely has movement limitations. A good therapist will first observe closely all posture and movements of the patient, and then give then do specific and thorough manipulation of muscles, tendons, ligaments, and fascia to release contracted tissue, also increasing circulation, erasing trigger points, reducing nerve entrapment, and correcting or minimizing postural distortion. These techniques are proven very effective in the treatment of pain and stress, repetitive strain, postural distortion, and chronic neuromuscular conditions. (even carpal tunnnel problems) MPS can cause all of these. Jesse tends to carry most of his muscular stress in his front thigh muscle, (Sartorius) and shoulder areas. (Deltoids and Rhombid Major) This is due to the posture he has from his barrel chest. It puts a strong reverse arch in his back. (mild reversal of the lumbar lordosis). Therefore the massage and trigger point releases have benefited him much. You can see the comfort he enjoys since these therapies started for nearly a year now.

Deep Tissue massage is what I contribute the release of the knots in Jesse’s heel cords to. Deep tissue involves methods more like compression, kneading tapping, and gliding strokes over muscles. This promotes circulation and also helps release stress and promote relaxation. Also the compression combined with strokes of the cross fiber can help to release knots in muscles that come from repetitive strain or poor posture problems like Jesse has.

Connective Tissue massage is designed to target areas where there is no longer any muscle tissue and the connective tissue fibers become tendons or ligaments and connects when CT (connective tissue) connects bone to bone. Connected tissue also is the most abundant tissue in the body, making up more of the human than any other tissue type. CT directly influences myofascial functioning and indirectly influences all organs, tissues and cells touched by CT. The loose connective tissue just below the skin has capillary channels, lymph vessels and many nerves. Subcutaneous fat is attached to it as well. There is great potential to store excess fluid, metabolites, and breakdown products of hormones, neurotranmitters and other chemicals in the body. The gentle massage and pressure to these areas help to clear channels, stimulate tissues to soften, fluids to circulate and metabolic processes to return to healthy levels. Thus giving a positive state of function to all of these. Metabolic processes are important for all of us, but especially in MPS. As many MPS children have much joint and muscular problems, which limit range of motion and abilities. When activity is minimized, so is the circulation in their bodies, When circulation is minimized, our bodies need stimulation to keep functions working better overall. Pressure and manipulation from CT massage really does help this process for all areas of the body.

There are many types of massage targeted for specific problems. We have also tried Craniosacral Massage as well. We have come to the conclusion that it was not benefiting Jesse much. We had hoped it would. We were not sure if Jesse had optimal CSF fluid flowing through his brain to allow the ultimate brain function that he is capable of. After several months of treatments, we decided this was not helping one way or the other for him. (this therapy was used for Jesse to create optimal CSF flow through his brain) I know of many children who get relief from headaches from this therapy, and it is being used to help people with hearing issues and speech issues also. Some have received much benefit from it. So don’t overlook this therapy if it may have something to offer you or your child.

You can learn more about Massage at More about Massage Therapy

Thanks again for stopping by!

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!

Amino Acid

Amino Acids

This week I thought I would touch on the use of Amino Acids. This can be a very detailed topic, but I will address the importance of amino acids in support to a struggling body in chronic diseases in ways that are not curative, but which certainly are not injurious, but most often helpful. The underlying cause of the illness must be the main consideration, and any therapeutic supplements be it be vitamins, minerals, enzymes or amino acids must be looked at as part of the effort required to help, not the whole effort required to cure.

By definition an amino acid is any large group of organic compounds which represent the end products of protein hydrolysis. Amino acids are acid based in reaction, and from them the body re-synthesizes it’s proteins. Eight of the amino acids are considered essential, meaning they are needed in the diet in some way, the body is unable to make these on it’s own. There are some forty five “essential nutrients” needed under normal conditions in an adult body, eight of these being amino acids. However, under certain conditions some of the amino acids which may be considered “non- essential”, (meaning that the body is able to synthesize them) can become essential and require dietary reinforcement in order to maintain health. Those substances are called contingent nutrients.
Arginine and histidine are of ambiguous state, as they may be synthesized by the body, but arginine in young people during periods of growth is usually required in the diet as well. Histidine is in a similar situation during youth, old age and when degenerative diseases are operating. These two then fall into a contingent category.


There are actually ten amino acids that are usually considered essential, even though two of them considered ambiguous (mentioned above) and are contingent. They are arginine, histidine, isoleucine, leucine, lysine, methionine, phenylalanine, threonine, tryptophan, and valine.

All amino acids can be considered “contingent” in youth, the elderly and degenerative diseases, as the body is constantly going through changes and not so called “normal”. In normal conditions there is a distinction to be made between which can and cannot be self produced. So in many cases of illness, stress or emotional fatigue, an amino acid deficiency is most probable.

There is a form of tests that can be performed to show amino acid levels. These can then be compared with normal or reference ranges in order to assess what is needed. Since amino acids play such a vital role in the healthy organism and they have such a major part to play in terms of the structure and function of the body, in both health maintenance and disease, the importance of such a test should not be overlooked. These tests may be used to discover aspects of the nutritional and metabolic status of a child, (or adult) as well as such factors as stress, trauma, and other therapeutic measures, as well as nutritional supplementation.

Protein malnutrition is a frequent precursor of amino acid deficiency. Such deficiencies –states may be associated with improper diet, failure to digest or absorb adequetly, stress conditions, infection, drug usage, trauma, imbalances or deficiencies involving other nutrients, such as vitamins or minerals, as well as age related and degenerative diseases.

There are a variety of conditions in which it could be desirable that an amino acid compound (one that includes both essential and non- essential amino acids) may be of benefit and good use for an individual. This may because of the result of a chronic disease (cancer, MPS, etc.) or a mento-emotional illness such as anorexia, or because of an impoverished diet due to ignorance or poverty, or a combination of factors. These compounds are usually produced to meet specific needs and in balance. These will usually include those amino acids which will enhance production of hormones, and other desirable substances, in ill health, and excludes those which are either seldom deficient, or which have the ability to provoke undesirable symptoms in certain individuals. Though cystine might be included for its detoxifying and anti-free radical activity, as well as for it’s contribution of sulphur, glutamic acid may be included in order to detoxify the brain of ammonia, and to provide an additional energy source for brain cells. Tyrosine might be included in order to aid in ultimate production of adrenocortical and thyroid horomones, as well as dopamine.

There are hundreds of uses for amino acids. Many of these can be used alone or in combination with other vitamins or amino acids for therapeutic treatments. Proper balances are very important. Don’t underestimate the power of these important nutrients.

In our lives here, I can honestly say that amino acids have added strength to Jesse's muscle development, balanced out brain issues with sleeping, and improved much cognitive ability. Jesse is a very happy and content child that understands so much of what we say and do. Unfortunately he cannot speak it verbally, but he shows us with his eyes and smiles, his happy laughter and babble at all the right times.

We use a general compound here in our house made by GNC. We use a combination of GNC Pro Performance - Soy Protein 95, and also the GNC Pro Performance -100% Whey Protein. (these protein compounds are where amino acids come from) Each individual amino acid amount is listed on the labels. We find ½ scoop of each is a good balance for a young man Jesse's size.

I use both Soy and Whey to get the best of both worlds so to speak. Whey protein, is absorbed quickly, and is high in branched chain amino acids, used as an important energy source by the body during exercise. While soy protein is more gradually absorbed and adds to a longer more even flow of absorption and energy.

*Also in addition, soy protein consumption may provide additional health benefits including a reduced risk of coronary heart disease when combined with a healthy diet. (Jesse has an aortic insufficiency. Recent studies also demonstrate that soy protein consumption may reduce the risk of certain kinds of cancer including prostate cancer.
*This study is consistent with other studies, which have demonstrated that soy protein has unique benefits for exercising adults in improving antioxidant status. These findings indicate that soy protein can help combat free radical formation during exercise, which may help speed muscle recovery after exercise.

With our MPS kids, muscles seem to deteriorate quickly. So muscle strength is important for us here. It helps to keep Jesse more ambulatory and easier on our back when caring for him. There are many sites about amino acids and their roles. I could write three blogs on just one amino acid. If you have interest in any one topic or amino acid of interest, just let me know. I will write as much as I know about the topic/problem or amino acid in question.

As usual Thanks for stopping by! I hope this journal is of help to you!

Fish Oils

Fish Oils

Fish Oil is an amazing thing to me. There are so many benefits to taking a good quality of fish oil. Nordic Natural’s is my favorite brand. Not only for quality but they have a variety of mixtures and flavors, and you can choose gel caps or liquids in most.

Again we are looking at Omega 3 fatty Acids.(this time not from a plant source) EPA -(eicosapentaenoic acid) which is the so called director of prostaglandins helping to calm down and protect our systems. It helps to maintain the heart and circulatory system, lowers those bad homocysteine levels, and helps to support proper immune function. EPA, also has a very positive effect on your inflammatory response. Through several mechanisms, they regulate your body's inflammation cycle, which prevents and relieves painful conditions like arthritis, prostatitis, cystitis and anything else ending in "itis."

Then we have the DHA (docosahexaenoic acid). DHA helps to feed our nervous system, our brian and our eyes. Approximately 30 percent of our brain is made up of DHA. It is essential for memory and learning, and all cognitive function. It also promotes a good mood and overall wellbeing.

Studies have shown that children (and adults) with ADD and ADHD experience a greatly improved quality of life. And those with dyslexia, dyspraxia and compulsive disorders have gotten a new lease on life thanks to omega 3 fish oils. It helps to improve memory, recall, reasoning, focus and attention span on most children who are hyperactive and or learning delayed in some way. Other research studies, found that omega 3 fish oil supplements "alleviate" the symptoms of depression, bipolar and psychosis.

I give Jesse 2 fish oil products, one in the morning and another at dinner. I use Artic Cod Liver Oil in peach flavor in the morning. The reason I use this one is because it also has naturally occurring vitamins A and D as well. In the winter, Jesse is not outside as much in the sunshine, so the little extra Vitamin D in the Cod Liver Oil is enough to keep his mood laughing and happy. As far as Vitamin A goes, Vitamin A deficiency is rare in the United States, but a deficiency can cause night blindness, eye inflammation, diarrhea and other problems. Then again too much vitamin A can cause nausea, irritability and blurred vision in its mild form. In addition, the palms of the hands and the bottoms of the feet can turn orange if a person has a high intake of Vitamin A. Vitamin A toxicity can cause growth retardation, hair loss and enlarged spleen and liver in its more severe form.

Then in the evening with dinner I give him the High Potency DHA by Nordic Naturals in strawberry flavor. This is an essential nutrient for maintaining cellular fluidity. It supports his emotional well being as well as memory and cognitive function. Again the brain is made up of approx 30 percent DHA.

For Jesse I can say that he is always in a good mood and happy unless he has a wet diaper. Since the addition of Fish Oils quite a while back, he was able to sit and focus on things better. So his attention span was improved a good deal. Also I believe in part to the Cod Liver Oil that inflammation in his body is physically non-existent. Jesse also has an aortic insufficiency. These past three years he has been stabilized and not gotten any worse. So possibly the Fish Oil is the reason for that as well.

I hope this journal helped you in someway. If you have any topic you would like to discuss or learn more about. Feel free to ask. I will do my best to give rock solid information on these things and share my own experiences with them as well. Jesse takes over 15 different supplements and is limited to a gluten and dairy free diet, as well as few other things in diet we eliminate. We also stay away from things like High Fructose Corn Syrup, MSG and artificial sweetners. Because of this he is happy, mobile and quite healthy, and easy to manage for the most part.

Thanks for stopping by! You only have one life in your physical body, please take care it properly while in this world of artificial and processed foods.

Flaxseed Oil

Some benefits of Flaxseed Oil:

Flaxseed Oil contains the 3 EFA’s (essential fatty acids). ALA, Omega 3 and Omega 6, these are key healing components. Our body cannot produce these on it’s own.They must obtained through food or supplement. EFA’s work to protect cell membranes, keeping them efficient at admitting healthy substances, while eliminating damaging substances from our body.

Flaxseed is rich in ALA,(alpha-linolenic acid) which is a precursor to Omega 3. Omega 3 fatty acids are used to produce series 1 and 3 prostaglandins which are anti-inflammatory hormone like molecules. Omega 3 can help reduce inflammation that can be associated with MPS diseases, asthma, arthritis, migraine headaches and such. Omega 3’s also have shown to have benefit in heart disease by providing substances that help reduce the formation of blood clots. It also has been shown to reduce cholesterol levels and lower blood pressure. You can find many more benefits of Flaxseed oil on webpages all over the internet. The best product in my opinion to buy, would be one that contains Lignans and has to be refrigerated. Lignans have been shown, in various studies, to contain anti-platelet-activating factor activity and possess antioxidant properties. Flaxseed oil is usually a very balanced source of EFA’s. The average beneficial dose is 1 – 3 tablespoons daily. There are many benefits to taking flaxseed oil. I have mentioned only a few here, mainly because these are the ones that have benefited my son with MPS III. (inflammation and heart) He has no swollen joints and minimal stiffness. His heart has been stable the past two years, even though he has an insufficiency.

My next article will be about Fish Oil benefits. Both Flaxseed Oils and Fish Oils have excellent benefits.

Feel free to leave comments below or leave a request in the comments section. (a new window will pop up when you click on comments.
Have a blessed day!

L- Carnosine

Thanks for stopping by Carrie!

In reference to L- Carnosine here is our experience. I first found about this supplement through Austism research while looking for things to restore brain function. All the research I have found on Pubmed and through Dr. Chez and a few others, showed this to be a very safe supplement to try. Original does with Autistic children were showing to be 400 mg -2x a day. It is also of benefit if the child is already receiving Vitamin E and Zinc supplement in small doses. As it is believed to help make the absorbtion/action of carnosine better. Children with Autism have shown both cognitive and speech improvement in the majority of the cases. So I decided to try this supplement. I started out with 250 mg one time a day. All went well, then after several days 250 mg - 2 x a day. (with meals breakfast and dinner) We all noticed more babble from Jesse. This was exciting of course. So after a week I upped the dose to 400 mg in the AM and 250 mg at dinner. The reaction was not too bad, but Jesse did seem a bit agitated at times and frustrated. This leveled off some so I went ahead and upped the dose again to 400 mg in both AM and PM. Well, this put Jesse over the edge in agitation. He still slept well, and wanted to be happy, but he couldn't stop tapping and sit still for long without tapping on something, or fidgeting and occasionally whining. So I gave it a week to see if he would settle in, But he did not. So I decreased the dose gradually back to a where he seemed happiest and still cognitively improving. This dose turns out to be 250 mg 2 x a day for him. Within 5 weeks on L-Carnosine Jesse started showing interest in the bathroom. Walking in out at times. (we tried to potty train him for 8 years and finally gave up) Well I noticed that each time he was walking in and out the bathroom that shortly thereafter he would have a BM. So I started putting him on the potty each time he went in the bathroom. Usually within 2 - 5 minutes he will have a BM on the potty now.

We now can say that 95% of the time, Jesse has BM's on the potty now. I and others also have noticed since Jesse has been on L-Carnosine that he is more aware of many things cognitively. Including when I leave to go somewhere. He now shows emotion and will sometimes cry, until I explain to him that I will be back shortly. Also he does not like wet diapers, he will complain immensely about them, but this we have not mastered number 1 on the potty yet. He only knows after he has gone and not before. (unlike the BM's) He also now relays his hunger pains when he has them with actions of getting his bowl from the table and or tapping on the table yelling at us. He has never done these things since he started losing skills when he was 8 years old. So these are good things seeing more activity in his brain and associating it with the proper things. We are still praying for speech recovery in time.

Jesse has been on L- Carnosine since January 19th 2007. Witihn 5 weeks we started changes and still do see new things happening. Here is some overview about L- Carnosine below and a few web links as well.

Carnosine, or L-carnosine, is an amino acid made naturally in the body, which was discovered more than 100 years ago. It is thought to be a powerful anti -aging supplement, with benefits that researchers have only recently begun to explore. Carnosine helps protect the body from glycation, one of the two main processes that cause symptoms associated with the breakdown, or aging of the body. Recent studies have indicated that glycation works together with oxidation to create free radicals, the destructive oxygen atoms that damage other healthy cells in the body. While oxidation is a result of oxygen use in the body, glycation is driven by the body’s use of sugar. The glycation process attacks the proteins in the body and converts them into Advanced Glycation End Products (AGEs). As AGEs accumulate throughout the body, they generate more compounded free radicals that break down tissues in the body, resulting in damage to the skin, eyes, nervous and circulatory system, and vital organs. The result is the wrinkled skin, mental decline, and other complications often associated with aging.

Carnosine supplements also combat cellular damage by helping the body rid itself of toxic metals, a process known as chelation. Excessive levels of pro-oxidative metals, such as copper and zinc and toxic heavy metals, such as lead, mercury, and nickel, have been linked to a host of illnesses, including Alzheimer’s, autism, Parkinson’s, dementia, ADHD, and schizophrenia. Supplementing with carnosine may help protect against these disorders, because it helps keep these substances from accumulating in your system.
L-carnosine has been shown to slow the glycation process in laboratory rats. In one study, carnosine was found to improve the rats’ lifespan, brain function, and physical appearance.

Do not confuse L-carnosine with L-carnitine, a supplement used to protect the heart and help stabilize blood sugar. These supplements are in no way related and serve entirely different purposes in the body.

http://www.nutritionreview.org/library/autism.carnosine.html < an excellent article