amino acids compounded

[michele]

Here is a list of the amino acids Dr. Demio wanted me to have compounded. I have never heard of this and was looking to find out if ohers have tried this or just try to buy the supplements? The amino acids are specialized based on his blood work and are quite expensive through Lee Silsby Compounding pharm of Cleve. Probably $50 a month. Do others think this is worth it in addition to the vitamins and supplements he already takes?

argine, histidine, isoleucine, leucine, methione, ornithine, phenylalanine, proline, serine, threonine, valine

 

I have never heard of many of these things. It says to start with one quarter dose and work up to a full dose in two weeks. one gram each p.o. per day divided.

I would appreciate any feedback.

[itsme]

Hi Michele,

 

We tried the aminos several manths ago and didn't really get any results. So we stopped after a month as they were quite costly. But who knows, they might work if taken long enough.

[Chemar]

Hi Michele

 

some of those amino acids are known to stimulate dopamine and therefore can increase tics in those with TS.

 

I would not want to contradict your doctor but I would certainly suggest caution in giving any amino acids that could stimulate more tics. I

 

Compounding can be very useful in that it gives specific amounts of specifically needed supplements in a single pill..........but as you have seen, it can become very costly, especially when one can obtain all of the aminos individually, in both powder and capsule form.

 

here is some info from Bonnie Grimaldi's site that discusses a bit on good and bad amino acids for those with TS

http://www.bonniegr.com/ts-PLUS%20Diet.htm

[kim]

Michelle,

 

Cheri doesn't want to contradict your doc, and I sure don't want to sound like I'm contradicting Cheri. She probably has more experience with amino acids than I do with the kids. I do want to add a couple of comments though, as this is a topic that I have many questions on.

 

The increase in dopamine and the relationship to tics, gets quite confusing. You had mentioned that one Dr. felt the ADD symptoms may be a bigger problem for Andrew. It has occured to me many times, that people who have tics and ADD/ADHD together have the problem of trying to figure out which medications to use...which is simply a docs best guess and trial and error in most cases. They really don't know exactly how most of these meds work. Take Ritalin for instance, it's thought to work by increasing dopamine. Dopamine is involved in the ability to concentrate etc. We have at least one parent here who reported a decrease in tics while her daughter was taking ritalin. I"m not trying to make a case for ritalin or any prescrip med for these disorders, believe me, but I just have a hard time, sorting out what effect dopamine has on tics. Some people experience a decrease in tics when they start a prescript med that blocks dopamine receptors/production or whatnot, but.....those effects don't always last. They can also lose their ability to concentrate, feel mentally numb etc. There are different types of dopamine receptors in different areas of the brain, sooooo It's kind of a balancing act trying to figure out, what may be a problem relating to dopamine, serotonin, epinephrine, norepinephrine, cortisol, glutamate, on and on. Also, since you know my concerns regarding vaccinations, we have to remember that Bonnie's son and some of the older TS/tic people/kids, may not be dealing with the all of the same damaged pathways, that the younger kids are, that were given such a heavy schedule. There are just so many variables.

 

Personally, if testing showed that these amino's were low, I would take them exactly as prescribed. I don't know how much more expensive the compounding is, compared to individuals but I do know how hard it is to get so many things down these kids. I guess that's a toss up. If you feel the compounded are making things worse, it's going to require another consult with Dr. and a new formula, but getting the right dose with the individuals may be hard too.

 

I think part of the reason that i feel i would just go with your Drs. reommendation (at least initially) is because of his credentials too. Some DANS that are not nearly as involved in this reseach as yours seems to be.

 

I'm so glad you are sharing all of this info Michelle. What ever you decide, I hope you will continue to keep us updated with what you're seeing. It's such a learning thing here, as more and more is discovered with what is happening with these children.

 

 

 

just a blip from wiki regarding ritalin

 

http://en.wikipedia.org/wiki/Ritalin

 

Methylphenidate is a central nervous system (CNS) stimulant.[10][11][12] It has a calming effect on humans who have ADHD[citation needed], reducing impulsive behavior, and facilitates concentration on work and other tasks. Adults who have ADHD often report that methylphenidate increases their ability to focus on tasks and organize their lives.

Methylphenidate has been found to have a lower incidence of side effects than dextroamphetamine, a less commonly prescribed medication.[13] When prescribed at the correct dosage, methylphenidate is usually well tolerated by patients.[4]

The means by which methylphenidate helps people with ADHD are not well understood. Some researchers have theorized that ADHD is caused by a dopamine imbalance in the brains of those affected. Methylphenidate is a dopamine reuptake inhibitor, which means that it increases the level of the dopamine neurotransmitter in the brain by partially blocking the transporters that remove it from the synapses.[14] An alternate explanation which has been explored is that the methylphenidate affects the action of serotonin in the brain.[15]

[michele]

Dr. Demio who has never discussed any type of ADHD meds feels Andrew has too many endorphins in the brain. Wouldn't we want to decrease this by calming down the rowdy guys? That is why he acts kind of silly (He can be a hoot) and drunk like. This is where it does get tricky. One Dr. contradicts another. They have very different approaches to meds. I have heard these attention drugs can increase tics and would be very leary to use them unless he couldn't perform at school. My friend's son who has mild CP takes Aderol and it has helped him greatly at school. Dr. Murphy told me tennex in low doses works on kids with tics and ADHD. Dr. Demio thought Actose could help mellow and help the immune system and the white blood cell attack on the brain plus give more oxygen to the brain. We have since stoped actose but Dr. Demio was disappointed he felt it could really help him. I hope they do studies on its use with kids soon. Dr. Demio did say to make sure the school knows this is a neurological immune problem not a mental one!

Michelle,

 

Cheri doesn't want to contradict your doc, and I sure don't want to sound like I'm contradicting Cheri. She probably has more experience with amino acids than I do with the kids. I do want to add a couple of comments though, as this is a topic that I have many questions on.

 

The increase in dopamine and the relationship to tics, gets quite confusing. You had mentioned that one Dr. felt the ADD symptoms may be a bigger problem for Andrew. It has occured to me many times, that people who have tics and ADD/ADHD together have the problem of trying to figure out which medications to use...which is simply a docs best guess and trial and error in most cases. They really don't know exactly how most of these meds work. Take Ritalin for instance, it's thought to work by increasing dopamine. Dopamine is involved in the ability to concentrate etc. We have at least one parent here who reported a decrease in tics while her daughter was taking ritalin. I"m not trying to make a case for ritalin or any prescrip med for these disorders, believe me, but I just have a hard time, sorting out what effect dopamine has on tics. Some people experience a decrease in tics when they start a prescript med that blocks dopamine receptors/production or whatnot, but.....those effects don't always last. They can also lose their ability to concentrate, feel mentally numb etc. There are different types of dopamine receptors in different areas of the brain, sooooo It's kind of a balancing act trying to figure out, what may be a problem relating to dopamine, serotonin, epinephrine, norepinephrine, cortisol, glutamate, on and on. Also, since you know my concerns regarding vaccinations, we have to remember that Bonnie's son and some of the older TS/tic people/kids, may not be dealing with the all of the same damaged pathways, that the younger kids are, that were given such a heavy schedule. There are just so many variables.

 

Personally, if testing showed that these amino's were low, I would take them exactly as prescribed. I don't know how much more expensive the compounding is, compared to individuals but I do know how hard it is to get so many things down these kids. I guess that's a toss up. If you feel the compounded are making things worse, it's going to require another consult with Dr. and a new formula, but getting the right dose with the individuals may be hard too.

 

I think part of the reason that i feel i would just go with your Drs. reommendation (at least initially) is because of his credentials too. Some DANS that are not nearly as involved in this reseach as yours seems to be.

 

I'm so glad you are sharing all of this info Michelle. What ever you decide, I hope you will continue to keep us updated with what you're seeing. It's such a learning thing here, as more and more is discovered with what is happening with these children.

 

 

 

just a blip from wiki regarding ritalin

 

http://en.wikipedia.org/wiki/Ritalin

 

Methylphenidate is a central nervous system (CNS) stimulant.[10][11][12] It has a calming effect on humans who have ADHD[citation needed], reducing impulsive behavior, and facilitates concentration on work and other tasks. Adults who have ADHD often report that methylphenidate increases their ability to focus on tasks and organize their lives.

Methylphenidate has been found to have a lower incidence of side effects than dextroamphetamine, a less commonly prescribed medication.[13] When prescribed at the correct dosage, methylphenidate is usually well tolerated by patients.[4]

The means by which methylphenidate helps people with ADHD are not well understood. Some researchers have theorized that ADHD is caused by a dopamine imbalance in the brains of those affected. Methylphenidate is a dopamine reuptake inhibitor, which means that it increases the level of the dopamine neurotransmitter in the brain by partially blocking the transporters that remove it from the synapses.[14] An alternate explanation which has been explored is that the methylphenidate affects the action of serotonin in the brain.[15]

[Chemar]

Hi Kim

 

I think once again it is ESSENTIAL to distinguish between tics resulting from Tourette syndrome (where dopamine has been shown to have a definite role in increasing tics) and tics caused by other factors.

 

that was why I specifically said that those aminos that increase dopamine are not recommended for people with Tourette Syndrome, and it is one of the reasons I am always so careful to draw the distinction between those with TS and the other tic disorders as I do not feel that they have the same biochemistry and so believe they react differently to supps etc

 

I know of a number of kids in whom Ritalin actually triggered the onset of their tics.

 

anyway, again I would urge caution *IF* your child has a TS dx and only because *some* of those amino acids are known to result in increased dopamine, which is known to trigger more tics IN THOSE WITH TS

 

I certainly would not suggest ignoring the doc's recommendation....and was more suggesting asking questions *only if* your child has a TS diagnosis.

[kim]

Cheri,

 

I don't think I would have posted what I did, if your response to Michelle wasn't there for everyone to see, first.

 

I always have a little alarm bell go off, especially when I see phenylalanine, because of the dopamine precursor stuff.

 

I know you would never suggest ignoring the doc's recommendation, and were only pointing out why some amino acids may not be ideal for movement disorders!

 

I would love to continue this discussion about dopamine though (on another thread..so we don't clutter up Michelle's), if anyone has the time to dig up some studies and discuss them. It just does not appear to be a cut and dry situation to me.

[michele]

I get what you are saying Chemar and also know Dr. Erenberg has said it is hard to differentiate tic disorders from PANDAS at a young age because they can wax and wane in a similar way. I know his tics have always came on with illness or exposure. However as they have gotten worse with more episodes so have the symptoms become more like tourettes. I wish there was a test to be sure what Andrew has. As Dr. Erenberg has said time will tell. I will be careful and I do appreciate your concern and value your opinions on these matters. I am very skeptical of trying new things but would love to find a way to fix things if I could. I mean how strange all those constant cracks are going away. He even sat tonight and colored so well. I will hold off on the amino acids for now. I hope I never have to decide to medicate for ADD. The risks are definately scary.

 

Michele

 

Hi Kim

 

I think once again it is ESSENTIAL to distinguish between tics resulting from Tourette syndrome (where dopamine has been shown to have a definite role in increasing tics) and tics caused by other factors.

 

that was why I specifically said that those aminos that increase dopamine are not recommended for people with Tourette Syndrome, and it is one of the reasons I am always so careful to draw the distinction between those with TS and the other tic disorders as I do not feel that they have the same biochemistry and so believe they react differently to supps etc

 

I know of a number of kids in whom Ritalin actually triggered the onset of their tics.

 

anyway, again I would urge caution *IF* your child has a TS dx and only because *some* of those amino acids are known to result in increased dopamine, which is known to trigger more tics IN THOSE WITH TS

 

I certainly would not suggest ignoring the doc's recommendation....and was more suggesting asking questions *only if* your child has a TS diagnosis.

[kim]

Michelle,

 

I hope you didn't take my post as any kind of encouragement to try ANY medication for ADD. The only point was, that maybe by increasing low levels of amino acids, some which may result in increased levels of dopamine, that you may improve ADD symptoms as dopamine is involved in focus and attention. Cheri was absoultly right in the statement about ritalin bringing out tics in some children who never exhibited them before, but that's ritalin not substances that come naturally from dietary sources, or that our body manufactures itself. I know other parents have shyed away from amino acid supplementation, for fear of the possibility of increasing tics. I just think it's important that we share, discuss all aspects that anyone can think of. Then discuss your thoughts with your Dr!

 

I'm truly overjoyed to hear of his improvement!