Need help

[myrose]

My daughter was on a 6 week program recommended after a dry blood analysis was done on her.

The program consisted of daily probiotics, enzymes, and a nutirent plant based multivitamin. There were a few other things added every 2nd week but we are now on the last two weeks which still consists the first three things I already mentioned but 3 others were added to these final two weeks and I do not like what I am seeing.

 

Let me also say that before adding these three things she was doing wonderfully! The changes I noticed were her complexion, the whites of her eyes were brighter and her appetite was WONDERFUL and still is. (she has been 40 pounds forever so I am LOVING this part)

 

Anyhow let me remind everyone that my daughter started on topamax in late May (early June) and has not had a tic movement since. Just a few eye blinks that eventually dissapeared a long with the other tics. The main reason for the topamax at first was because of a somewhat mildly abnormal EEG that showed some spike and wave patterns on the right side of the brain. Turns out this had nothing to do with her tics but we made a decision to continue with a low dose of topamax because it took her tics completely away (I am sure I do not have to remind everyone how bad she was)

 

But now all of a sudden and out of nowhere right after adding the three extra supplements she has become wired!!! I swear I also noticed a few body jerks that sent a KNIFE stabbing in my chest. Also noticed some eye blinking when I brushed her teeth!

 

We have had none of this since summer and the only different things were the three following supplements: I put their purpose afterwards, I copied it all from her program sheet.

 

1 cracked Cell Chlorella (to extract metals) (www.mercola.com)

1 Super Omego 3 EPA (to bind with metals as they are extracted) It states: VERY IMPORTANT after this one

1 Burdock ( for liver strenghtening and blood cleansing)

 

She only has to take these for another week but I am getting concerned and do not want anything to start again and NOT go away.

I know sometimes things have to get worse before they get better but I am scrared and unsure what to do or which one if not all 3 of the added supplements could be causing this.

 

She showed a high heavy metal concentration on the right side of her brain (same spot where the EEG was reading abnormal from) so that is why she is ont he 6 week program.

 

We were doing GREAT on everything else and then BAM!!!!!! Do you think one of the supplements are pushing some tics through even while on topamax???? I really want to continue with the program so we can re-check the blood but I may just stop tomorrow now.

 

Any comments??? advice (I did call the doctor) waiting call back.... If we stop now we will have stopped almost a week 1/2 short of the final to weeks. This last two weeks dealt specifically with the metal extraction....could that be causing something????

 

If we ever go back to the way things were....I am just not sure anyone here especially my daughter will come out of it all again....sane anyhow.

[ilovedogs]

Well, I don't know what real advice to tell you except to say that some folks see tics with Omegas if they are from fish oils. Also, you are detoxing the body and this may be the body's way of releasing the energy, so to speak. I'd give her doc a call and tell them what's going on but I'd probably give it more time, though. As long as the tics are mild, know what I mean? Sorry to hear that you're having new concerns as I think we all know how that goes!

 

Bonnie

[kim]

myrose,

 

I'm wondering if the dose of EPA is high enough to affect the way your daughter is metabolizing topamax. EPA can affect some of the cytochrome p's. I'm sure not any kind of authority here, but I suspect some people who have really touchy systems in regards to certain drugs and steroids have a problem in this area to begin with, which is why I'm a bit familiar with it. I copied a few things from wiki here for you. Take a look and see what you think. As you can see these enzymes are active in the liver. Btwn the super EPA and the Burdock, you might be either increasing or decreasing the way that the topamax is working. Personally, I would not continue with them until I knew exactly what was going on, especially in regards to the topamax or until your Dr. can reassure you that there is not an interaction taking place.

 

 

 

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

 

EPA has inhibitory effect on CYP2C9 and CYP2C19 hepatic enzymes. At high dose, it may also inhibit the activity of CYP2D6 and CYP3A4, important enzymes involved in drug metabolism.[9]

 

 

http://en.wikipedia.org/wiki/CYP2C9

 

Cytochrome P450 2C9 (abbreviated CYP2C9), is an important cytochrome P450 enzyme with a major role in the oxidation of both xenobiotic and endogenous compounds

 

 

http://en.wikipedia.org/wiki/Cytochrome_P450

 

P450s in humans

Human CYPs are primarily membrane-associated proteins, located either in the inner membrane of mitochondria or in the endoplasmic reticulum of cells. CYPs metabolize thousands of endogenous and exogenous compounds. Most CYPs can metabolize multiple substrates, and many can catalyze multiple reactions, which accounts for their central importance in metabolizing the extremely large number of endogenous and exogenous molecules. In the liver, these substrates include drugs and toxic compounds as well as metabolic products such as bilirubin (a breakdown product of hemoglobin). Cytochrome P450 enzymes are present in most other tissues of the body, and play important roles in hormone synthesis and breakdown (including estrogen and testosterone synthesis and metabolism), cholesterol synthesis, and vitamin D metabolism. Hepatic cytochromes P450 are the most widely studied.

 

The Human Genome Project has identified 57 human genes coding for the various cytochrome P450 enzymes.[9]

 

 

[edit] Drug metabolism

CYPs are the major enzymes involved in drug metabolism, accounting for ∼75% of the total metabolism.[10]. Cytochrome P450 is the most important element of oxidative metabolism (also known as phase I metabolism). (Metabolism in this context is the chemical modification or degradation of drugs.)

 

 

[edit] Drug interaction

Many drugs may increase or decrease the activity of various CYP isozymes in a phenomenon known as enzyme induction and inhibition. This is a major source of adverse drug interactions, since changes in CYP enzyme activity may affect the metabolism and clearance of various drugs. For example, if one drug inhibits the CYP-mediated metabolism of another drug, the second drug may accumulate within the body to toxic levels, possibly causing an overdose. Hence, these drug interactions may necessitate dosage adjustments or choosing drugs which do not interact with the CYP system. Such drug interactions are especially important to take into account when using drugs of vital importance to the patient, drugs with important side effects and drugs with small therapeutic windows, but any drug may be subject to an altered plasma concentration due to altered drug metabolism.

 

A classical example includes anti-epileptic drugs. Phenytoin, for example, induces CYP1A2, CYP2C9, CYP2C19 and CYP3A4. Substrates for the latter may be drugs with critical dosage, like amiodarone or carbamazepine, whose blood plasma concentration may decrease because of enzyme induction.

[kim]

removed double post

[faith]

hi myrose,

if I am understanding correctly, you only have another week or so to finish up with this supplement program? It is not continuous? Why is that, btw? If the tics are just poking through and it is not anything severe, I think I would just ride it out and finish the course if it is only another two weeks. My feeling is the detox process is maybe causing these side effects which can happen when pulling metals (like a die off effect). I know you want to eventually get off the medication and so I suppose you have to go through this part in order to get there. I totally understand the fears you have, but if you stop now, then what? I think you are so used to NOT seeing any tics, that even just some eye blinks are going to seem scary to you even though some would consider that mild. Maybe you have spoken to the doctor by now, did he say there might be a reaction?

 

Faith

[kim]

But now all of a sudden and out of nowhere right after adding the three extra supplements she has become wired!!!

 

 

That just doesn't sound like a detox reaction to me. Achy, flu like, even ticcy, but not wired in MHO.

 

I had recommended a friend try magnesium once a few years back, after checking with his physician. The answer he was given was "anything over the counter should be safe or Ok" something like that. Well, it interfered with his Orap and it was awful. I may be a bit cynical in this area now, but I'm not certain Dr.s always know about supplement and drug interactions. In fact my son was prescribed doxycycline for a staph infection and I had taken his vitamins to the dermatologist who prescribed. It can't be taken with calcium. He didn't know and didn't bother to check. Other minerals like magnesium, zinc, iron etc. can cause reduced effectiveness too. With doxycycline you can avoid problems by taking well away from each other, but I didn't know that at the time. Same thing happened to a friends mom with calcium supplements and her blood pressure medication. Supplements can have very distinct interactions with different meds.

If by chance the EPA or Burdock were interferring with the Topamax, it could be like quitting cold turkey. I know myrose has said that she is on a very small dose, but I would still be very cautious with this situation. Wanted myrose to know where I was coming from incase I'm way off base.

[myrose]

Yes I only have a week 1/2 left to go, these last three that seemed to cause things only were to be taken for 2 weeks.

I am STILL waiting for the doctor to call. I believe they are calling the company (person) who did the actual blood analysis and precribed the program. I did not give them to her this morning or tonight (she takes them in the am and pm)

I saw a few body jerks today....if I see nothing tomorrow I will assume it was indeed from the the last three supplements we added and will not continue. The program was only 6 weeks to rid her of some heavy metal and a virus or fungus that was feeding off from the carbohydrates she was eating (and begging for)

This is really starting to bother me. I remember how it all started so slowly like this in the beginning.

We have to re-check the blood after the program and see what her body has been able to do with the nutrients and such she has been given. I am assuming they may add something different or hopefully everything did its job and we will be fine and can then start to wean off from topamax (scary) but know with this happening and I stopping the program...I am not sure know what.....

I am going to call yet again tomorrow to the doctor...very frustrating when you wait...feels like forever.

She has not mentioned her little jerks to me so I am just keeping my fingers crossed. I also asked her teacher today if she saw anything and she saaid no but didn't commit a whole day to studying her (ya know what I mean)

 

I am trying to find something to read about symptoms of heavy metal detox....but haven't found anything yet.

You would think she would have some kind of reaction in regards to the metal extraction but I just don't know....

 

Hope I answered all your questions and thanks so much for all your replies and help. I really want to finish this program and get the blood analysied again to see if the metals are gone...I want them out...this I know. I really am curious to see how it effects her EEG next time around (being that the metal is where the discharges were also from)

Thanks again everyone...guess I just have to wait now.....UGH!!!!!!!!!!!

[airbucket]

myrose,

 

i truly feel for you. my son also has been (i hate the term) "tic free" 99% since Feb., except for vocals i think, but im not sure if those are tics, they are the same noises he has made since a toddler. anyway, i used to live in constant fear of the tics returning, like some kind of monster sent to torment me. i did everything, and maybe still do a little, to fight them, being vigilant about he eats, which is still am. but i fought it so much, i think i spent more energy, and maybe sometimes still do, on worrying about the return of the body tics and every little thing that could cause that, than i spent on doing things that could make a difference all around. It was only when i learned a little bit about how to accept the tics as just an unknown that i am trying to figure out and not as my enemy that i felt a little better. acceptance is difficult but brings peace.

 

i carefully read what you wrote and first of all i wonder if you did ask about the interaction between tomapax and the supplements? if not, and it were me, i would stop them until you find out the interaction. i have always read that you can rarely mix vitamins and minerals with pharmaceuticals. I once wrongly took magnesium and B with an antibiotic not thinking twice that they do not mix. im sure you could find out in a phone call the answer and then you could know right away how to proceed with this treatment. the other thing i would mention is the fish oil, we have all heard its possible negative effect on tics. i give flax oil. Also, what about neurology? something in the brain, of course affected by/triggered by something in the body, is "misfiring", out of balance. and it may or may not be a particular vitamin or food.

 

what about the possiblity of the topamax just not "working" any more? we hear all the time about medications becoming neutral and not performing their function. but i would still start with checking that interaction with the 3 new supps and topamax. my son just also started displayin a very few random tics, but thats more than he has had. a few body jerks, leg twitching and spinning. i too am wondering whats going on as his diet is 110% clean and GF and has been for a months now, not one piece of anything not natural. even beverages. he has been taking the same amount of magnesium daily, i give fish oil on and off, probiotic, and a new multivitmin that i am now wondering about because it has fermented whole foods and i dont know if thats bad. otherwise school is a terrible stressor currently and he has ADHD as well, we just realized. do you give magnesium myrose?? im sorry i dont know much about metals.

 

we are making progress, and will continue to with a positive attitude and acceptance of what cant be changed at the moment so we can focus on learning more. you arent alone myrose! i feel the same frusturation, im sure many parents do!

 

 

 

 

My daughter was on a 6 week program recommended after a dry blood analysis was done on her.

The program consisted of daily probiotics, enzymes, and a nutirent plant based multivitamin. There were a few other things added every 2nd week but we are now on the last two weeks which still consists the first three things I already mentioned but 3 others were added to these final two weeks and I do not like what I am seeing.

 

Let me also say that before adding these three things she was doing wonderfully! The changes I noticed were her complexion, the whites of her eyes were brighter and her appetite was WONDERFUL and still is. (she has been 40 pounds forever so I am LOVING this part)

 

Anyhow let me remind everyone that my daughter started on topamax in late May (early June) and has not had a tic movement since. Just a few eye blinks that eventually dissapeared a long with the other tics. The main reason for the topamax at first was because of a somewhat mildly abnormal EEG that showed some spike and wave patterns on the right side of the brain. Turns out this had nothing to do with her tics but we made a decision to continue with a low dose of topamax because it took her tics completely away (I am sure I do not have to remind everyone how bad she was)

 

But now all of a sudden and out of nowhere right after adding the three extra supplements she has become wired!!! I swear I also noticed a few body jerks that sent a KNIFE stabbing in my chest. Also noticed some eye blinking when I brushed her teeth!

 

We have had none of this since summer and the only different things were the three following supplements: I put their purpose afterwards, I copied it all from her program sheet.

 

1 cracked Cell Chlorella (to extract metals) (www.mercola.com)

1 Super Omego 3 EPA (to bind with metals as they are extracted) It states: VERY IMPORTANT after this one

1 Burdock ( for liver strenghtening and blood cleansing)

 

She only has to take these for another week but I am getting concerned and do not want anything to start again and NOT go away.

I know sometimes things have to get worse before they get better but I am scrared and unsure what to do or which one if not all 3 of the added supplements could be causing this.

 

She showed a high heavy metal concentration on the right side of her brain (same spot where the EEG was reading abnormal from) so that is why she is ont he 6 week program.

 

We were doing GREAT on everything else and then BAM!!!!!! Do you think one of the supplements are pushing some tics through even while on topamax???? I really want to continue with the program so we can re-check the blood but I may just stop tomorrow now.

 

Any comments??? advice (I did call the doctor) waiting call back.... If we stop now we will have stopped almost a week 1/2 short of the final to weeks. This last two weeks dealt specifically with the metal extraction....could that be causing something????

 

If we ever go back to the way things were....I am just not sure anyone here especially my daughter will come out of it all again....sane anyhow.

[patty]

Myrose,

 

So sorry to hear that the tics returned. I know how you feel and the anxiety of not knowing what is contributing to the tics. It is nerve wracking!

 

I can tell you my experience. I had given fish oil to my fish on two occassions and both times caused tics. Are you familiar with NAET? Well, the desensitization helped after it was treated. So if fish oil is the trigger, you may want to consider NAET.

 

Also, my son's tics spiked when he was on homeopathic combination remedy detox. Luckily, once i stop the remedy, the tics also subsided. I think it took about a good 2/3 weeks.

 

I understand your fear. It is really hard to continue with the supplements if they cause aggravations. Also, my son's previous ND told me that things could get worse before getting better. However, she did not have any definite answers. Honestly, i don't think anyone know the outcome, even with drs. I think you need to go with your gut and decide how much trust you have with your dr. I have gone thru quit a bit of drs. the last couple of years, and in my experience, i get better results with dr. that i trust and feel comfortable with.

 

If you think the supplements may be the trigger, why not stop them and see what happens so you can confirm your suspicion.

 

Pat

[kim]

Patty!!!!!

 

Have those fish quit ticcing yet??????? I think we know what you meant but thanks for the laugh!

 

 

 

Myrose,

 

The program was only 6 weeks to rid her of some heavy metal and a virus or fungus that was feeding off from the carbohydrates she was eating (and begging for)

 

Could you tell me if this is something new for your daughter? Could you say how long she has been a carb craver? Has she always been that way or did this start or incresase after her neuro problems (and vaccines). Is it candy/sweets too or only carbs that you notice excessive craving for?

 

Also, I think you said that pyruvate was checked when this first started. Do you know what that test showed? Do you know of any abnormal levels from the testing that was done?

[myrose]

This is the second FULL day I stopped all supplements. No jerks or anything today. We are back to where we were. THANK GOD IN HEAVEN!!!!!!!

I did suspect the fish oil as some of you recommended but being that she took it before with no issues I was not concerned.

It is different and stronger though.....Hmmm

 

I am going to continue with her probiotics, enzymes and multi for now. The doctor wants her to come in and do the blood now for the 2nd dry analysis and apparently we will go from there.

I still did not get to talk to the doctor.....that makes me mad. But I think we are going to ride this out if everything stays the way it is and just enjoy the holidays for now. I don't want to do anything right now.......I want to have a good holiday and make up for last year.

 

I will do the blood after Christmas holiday.....just need a break I guess and I do not want to get more out of the spirit if I see those things come back AGAIN!

 

Thanks for all your help and replies....and I sure do hope everyone has a wonderful HAPPY holiday.........

 

I will update if anything changes....I am just very happy right now

[patty]

Kim,

 

That was pretty funny! Thanks for pointing it out. I had a good laugh and needed it!

 

Pat