heavy metals detox?

Messages
10
Reaction score
0
Points
0
Hello First time posting,I have a 4 year old boy that started having SZ. 3 years ago.

He has been drug resistance ,so far we have tried over 10 meds.
he is on lamictal 100mg morning 125mg night , Tileptal 3mL. morning and evening

We have just added Trileptal ,he has been on Trileptal for 2 weeks today and has been SZ. free 10 out of 14 nights ,wich for us is the most control we have ever had with any med.

His Neuro. is recommending the New VNS .
He has a normal MRI ,he is not a candidate for surgery at the moment.
Genentic Testing is normal .

His SZ. are during sleep ,nap, or on awaking .

We have tried Keto diet ,gluten free ect.

We recently started seeing a holistic doctor ,he had a sample of his hair sent too a lab for heavy metal testing ,and my sons test came back with really high levels of ,Mercury ,Arsenic,Cadmium,Aluminum,and a few others .
I did not trust the results so I had testing done ,from another Lab and same results came back high metals again so I believe the results.

I have shared the results with his Neuro. at Childrens Hospital ,and she has been very dismissive saying she doesn't know much about heavy metal toxicity.

The holistic Dr. is recommending ,a natural slow chelating agent, Modified Citrus Pectin, and few minerals ,he says this is the safest way for a young boy with refractory epilepsy to chelate .

Does anyone have any thoughts on this ?
It seems mainstream medicine does not pay much attention too Heavy Metals causing SZ. ,are we too ignore the results .

Any thoughts ?

Warm Regards
Sandy
 

masterjen

New
Messages
2,080
Reaction score
0
Points
0
A few questions for you, and for you to consider asking the individual practicing holistic procedures:
1. Your child is 4 years old, and barely out of babyhood; what kind of training and experience does this person you are entrusting with your child's life have with very young children?
2. How much training and experience does this holistic person have in treating epilepsy, and at that very young children with epilepsy?
3. Having high levels of those metals does not mean the levels represent toxicity, of that they will ever become toxic. You might want to clarify the definition of these two terms with your child's family doctor.
4. There are more reliable ways to measure whether some of these metals are present at high levels in your son. Ask your family doctor about blood tests, urine tests, etc. to assess for these.
5. There might be a reason mainstream medicine does not pay much attention to heavy metals causing seizures; ask yourself what your research has shown you in this regard, and ask your son's neurologist again.
 
Messages
10
Reaction score
0
Points
0
Hello and thanks for the reply ,

The concerns you have stated are the exact same reasons we are so confused, and have held off on the holistic Dr.advise .

The Holistic Dr. is a MD he has been practicing for 30 years ,he is a DAN Dr.
Defeat Autism Now DR. neurologist

My son has idiopathic focal epilepsy,he has been having SZ everytime he naps ,or at night in his sleep,this has been happening every single day for 3 years . He has an aura ,1 min. tonic clonic 1 min. myoclonic jerks 1min. in that order always .



Since we have no cause I feel we need too explore every possible reason for SZ. metals could be a cause ,





Still since his epilepsy is idiopathic even if we get control with Trileptal ,we feel it that and VNS is just putting a bandaid on an underlying condition that could be the toxic metals in his body ,that's were we are so frustrated and confused .

Don't get me wrong we are super exited that something seems too be working .




I don't think we are the only ones that have this specific case ,hopefully someone that has dealt with heavy metals and epilepsy will come along and share their experience .




Maybe the metals are causing these seizures ,from what we have been told hair test are the most accurate test for heavy metals .




Warm Regards

Sandy
 

Cint

VIP
Supporter
Messages
5,541
Reaction score
13
Points
203
My son has idiopathic focal epilepsy,he has been having SZ everytime he naps ,or at night in his sleep,this has been happening every single day for 3 years . He has an aura ,1 min. tonic clonic 1 min. myoclonic jerks 1min. in that order always .


Since we have no cause I feel we need too explore every possible reason for SZ. metals could be a cause ,
But then again, maybe they'll never find a cause.

Has your son had a 24/7 EEG so they can monitor his seizures? Since they happen only when he is napping, sleeping, have you considered the things he may have put in his mouth as a baby, i.e. toys, pacifiers, lead paint, etc? What things did YOU consume when you were pregnant?

BTW, Herbal Meds contain heavy metals, so I hope you're not giving your son anything like that.


sandy flores said:
Still since his epilepsy is idiopathic even if we get control with Trileptal ,we feel it that and VNS is just putting a bandaid on an underlying condition that could be the toxic metals in his body ,that's were we are so frustrated and confused .

Don't get me wrong we are super exited that something seems too be working .
:ponder: I have the VNS, and yes it works for some. It stopped the bleeding.


sandy flores said:
Maybe the metals are causing these seizures
Yes. I would certainly look into that!!

http://emedicine.medscape.com/article/814960-clinical#b4

Patients with chronic metal toxicity tend to have more prominent involvement of the central and peripheral nervous systems. However, encephalopathy and peripheral neuropathies may occur within a few hours to days of acute high-dose exposure.
 
Messages
10
Reaction score
0
Points
0
Hello Cint thanks for the reply
and the link.

Yes we are aware that a cause may never be found ,but we will keep trying too find one .

Yes he has had a 72hr VEEG and a 3 , 48 hr VEEG,
3 TESLA MRI 2 of these
PET imaging ,CAT Scan
Genetic Testing
Every blood test that could be done to rule out an underlying condition,thyroid ,electrolytes,saw an Endocrinologist did every every test that could be a cause for SZ.
Sleep Apnea Study
Cardiologist, EKG to rule out heart problem
Ophthalmologist
ENT
Ketogenic Diet ,Gluten Free .ECT

Yes we have the new model VNS option and that will be our next step ,I am happy too hear it worked for you,but before we go that route I want too look into the Heavy Metals ,there not much info. outhere on this ,if anyone can recommend a Dr. in the Los Angeles area that if familiar with this .

I feel we need to rule this out as a cause of SZ. before we do VNS .

Thank You
Sandy
 

masterjen

New
Messages
2,080
Reaction score
0
Points
0
Hi, Sandy;

I would suggest having your son's levels of the heavy metals you are concerned with measured by some other means to verify results to see if you really need to be concerned. You son's neurologist or family doctor should be able to help with this. Getting a second or even a third opinion is very wise for anybody but especially for young children. This other opinion shouldn't just come from another lab through your holistic practitioner, but from another physician such as the neurologist or family doctor who can use another form of testing.
 
Messages
10
Reaction score
0
Points
0
Hello masterjen

If it were only that easy , it seems like the medical community does not fully understand heavy metals ,or ignores requests too test for them .

From reading online and talking too parents of autistic children, heavy metals are and have been linked too many neurological disorders,including SZ..

I am pushing our Drs. too run different tests on our son ,too confirm the results we have gotten from two different hair samples ,from two different labs .

We pay and are willing too cover costs of all metals testing ,so it is not an insurance issue that's holding testing up ,the answers we get from our Drs. at Childrens Hospital L.A ,it is a level 4 epilepsy center ,is that they are not familiar with heavy metal toxicity, and that they will research it.

I think neurologist have tunnel vision when it comes to treatment and too often do not look for the root cause of the Seizures ,most of the tests we have done have been on our own too look for underlying cause of SZ.

The main reason I am posting on here is too see if there are others here with this dilema and how they have dealt with it .

I will test and retest that is not a problem ,finding a doctor too help with the process is the hard part.

Regards
Sandy
 

masterjen

New
Messages
2,080
Reaction score
0
Points
0
Sandy - you may have interest in the following article: http://emedicine.medscape.com/article/814960-overview

Excerpt from this article:
Where heavy metal toxicity is suspected, time taken to perform a thorough dietary, occupational, and recreational history is time well spent, since identification and removal of the source of exposure is frequently the only therapy required.


and

"A history of exposure is the most critical aspect of diagnosing heavy metal toxicity. A complete history includes questions about potential occupational exposures, hobbies, recreational activities, and potential environmental exposure.

A complete dietary history should be taken, especially the ingestion of fish, seafood, and seaweed products since these will frequently be implicated as dietary sources of organic (and relatively nontoxic) mercury, arsenic, or both. The timing of ingestion relative to the collection of urine samples is critical to interpreting the results.

Herbal medications and dietary supplements are also potential sources of heavy metal exposure. Many Ayurvedic and Chinese patent medicines contain heavy metals.
"
One could assume from this, then, that if the source of the heavy metal poisoning is not removed then despite treatment the particular metal will again build to toxic levels which would necessitate costly treatment again. This could lead to a vicious cycle. And besides, who wouldn't want to avoid exposure to more chemicals (the treatment) if removing the cause of the metal poisoning is all that is needed?!

Related to the above, using lead poisoning as an example:
"Within the United States, lead remains the most frequently encountered toxic metal, owing to long-term exposure. In children, exposure has been shown to be a result of living in houses that contain lead paint. It is currently estimated that approximately 4 million households within the United States have children living within them that are being exposed to lead"


The following standard laboratory determinations may help make the diagnosis of heavy metal toxicity or help gauge its severity:

Complete blood cell count (CBC) with peripheral smear - Findings may include basophilic stippling of the RBCs on peripheral blood smears; basophilic stippling is not specific for lead toxicity and may be observed in arsenic toxicity, sideroblastic anemia, and thalassemia; the anemia of lead toxicity may be normocytic or microcytic.
Renal function tests
Urine analysis (look for proteinuria)
Liver function studies


The article refers to chelation therapy and gives an explanation of it, however also says: There is evidence of no benefit with chelation therapy for several metals, and evidence of increased toxicity after chelation of several others (eg, selenium). Therefore, routine chelation of patients with heavy metal exposure cannot be recommended, and the decision to chelate should be made in conjunction with a medical toxicologist or local poison control center.

Good luck, Sandy. I don't envy the position you're in, as you navigate the difficult road of getting seizure treatment for your child.
 
Last edited:

masterjen

New
Messages
2,080
Reaction score
0
Points
0
:soap: This IS the exact same article I posted! HELLO!! This is basically what I'm saying. Anybody out there?!!
Yup, exactly. I wanted to mention specific quotes from there so in the even no one wanted to read it, they would get some of the key points from it. I have other related articles, but perhaps this is enough for now!
 

Kgartner

New
Messages
273
Reaction score
0
Points
0
In addition - and at the risk of heading down a different tunnel - I do feel that it is important to mention that a hair sample test is not considered to be a reliable way to diagnose heavy metal toxicity. Numerous tests of that method show a tremendous amount of variation depending on the lab used. Blood and urine tests are much more reliable, and have a much lower incidence of false positives. I highly recommend moving forward with those tests, and not initiating a treatment (as was mentioned above, chelation can have serious consequences) unless there is a clear indication that it is needed.

As the parent of a child with epilepsy I understand the desire to know "why." But in the majority of cases (about 70% of the time) a cause cannot be found. That does not mean you should stop looking, but I would be wary of glomming onto one possible explanation unless the evidence becomes clearer. Ultimately you may need to accept that you will never know for sure. And yes, that sucks, but it a reflection of the complexity of our brains, and the fact that neuroscience is still really in its infancy.

Finally, good luck with the trileptal! I hope it keeps working for him!
 

Cint

VIP
Supporter
Messages
5,541
Reaction score
13
Points
203
Ultimately you may need to accept that you will never know for sure. And yes, that sucks, but it a reflection of the complexity of our brains, and the fact that neuroscience is still really in its infancy.
:agree: Neuroscience IS still in it's infancy! They still keep coming up with new names for different seizures and the different toxics that can cause them.

And especially for young, growing brains, it is more of a challenge, because they're more pliable and are constantly changing.
 
Messages
10
Reaction score
0
Points
0
Hello and thanks for the replies and the links ,

Neuroscience IS still in it's infancy,is correct also doctors need too listen too their patients and explore new things instead of just writing scripts for AED and upping the dose.

As far as heavy metals go we saw a new neurologist on Friday that is at least willing to explore this as a cause ,we will be seeing a pediatric toxicologist,in 2 weeks and we will do whatever testing is recommended to either rule out or confirm the hair tests we have done .

Trileptal seems too be working ,we have an ear infection at the moment and had 3 bad nights with tonic clonics ,saw his pediatrician and started antibiotic and no seizures since starting the antibiotics .

And yes I am aware we may never know a cause for my sons seizures ,we will keep looking for a reason and a cure ,right now we are just praying that we get control with Trileptal and give him some relief ,poor baby has been having multiple tonic clonic seizures every night for over 3 years ,right now the most important thing is getting some control.

He is a smart boy he just started school a couple weeks ago ,he has some difficulty with language but other than that his teachers say he is were he should be for his age.

I will update on what the pediatric toxicologist has too say in case anyone out there has this issue ,there is not much info. on this .

Warm Regards
Sandy
 

Nakamova

Super Moderator / Thank You Queen
Moderator
Messages
17,002
Reaction score
412
Points
193
Sandy, definitely keep us posted. As others have mentioned, the validity of hair analysis in diagnosing heavy metal poisoning is questionable, so I hope your docs conduct other tests that are more reliable and will set your mind at ease one way or another.
 
Top