Could Dr's miss a Vitamin or Mineral Deficiency?

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Hi everyone,

My Daughther started having TC's at 6 weeks old(she's alomost 8 months now). Generally her seizures are after feedings(but not always), she will fall asleep and when she wakes up will have one. At the beginning she was having 2-3 per day and after her second stay at the hospital she was put on Phenobarbital and has had limited sucsess.

The best we have been able to control was 2-3 seizures per week, and this is after 2 0r 3 secondary drugs have been tried, but no joy. ever since the doctor maxed her dose on the pheno, her seizures have started to pick up in frequency, and even after dropping her dose back, she is back to having 1-2 per day on average.

Question: When we were in the hospital the first time, they drew blood to check vitamin levels and so forth, and wanted to take a urine sample(unsucsessfully might i add) and told us that her levels were fine. Could they have missed a trigger like Calcium, magnesium, hormone levels, etc.?

The nuerologist doesnt seem to be too worried about any of that stuff, and I still have a funny feeling that her seizures could be related to some sort of deficiency.

Tom
 
I am so sorry your baby and you are going through this. I know this is incredibly hard for you.

Did she have a fever at some point?

My cousin's febrile seizures were caused by a vitamin b6 deficiency. The docs had said her vitamin b was fine. Parents finally took her to a top children's hospital, who suggested the b6 to try first before drugs. It worked. I've heard the only real way to see if this helps is to try it. If you decide to do it, only do it with a pediatric neurologist's help.

Yes, they can miss things. The general test for blood calcium level may not tell them what they need to know. The test for ionized calcium has to be ordered in addition to the metabolic panel. Did they do that?

http://labtestsonline.org/understanding/analytes/calcium/tab/test

Ask for the actual lab results (not the doctor's interpretation). Also ask for a copy of all the doc's chart notes.

Here's a page on epilepsy.com talking about diagnosis of febrile seizures:
http://www.epilepsy.com/info/family_infants_diagnosis

http://professionals.epilepsy.com/sitemap/map_about.html

http://www.epilepsy.com/epilepsy/epilepsy_febrile
http://professionals.epilepsy.com/page/infectious_febrile.html
http://professionals.epilepsy.com/page/febrile_seizures.html


I am hoping there is a resolution for you soon. And also that your daughter will outgrow her seizures and that it isn't eventually classified as epilepsy. Several of the sources say that can be the case.
 
When the seizures first started, she had a really low grade fever and still had it in the hospital, but it wasnt enough to be a febrile seizure...like 99.8 max. Since then she hasnt had fevers but continues to have seizures. We tried B6 on our own not to far into all of this, and it seemed to have little to no effect. Discontinued after around 8-9 days. I dont know what is in store for us, but hopefully soon we will find some sort of control. Nice to know about the calcuim though.....I dont know if they checked the idodized level or not, but i will ask.
 
Just realize the reason you might need a test for calcium is because anti-convulsants have a tendency to decrease calcium & Vit. D levels.

http://www.ncbi.nlm.nih.gov/pubmed/6725504

Sadly there is no vitamine or supplement that has been scientifically proven to help epilepsy with the exception of Vitamine B in very specific cases.
 
Well known fact.

However, low calcium levels can CAUSE conditions like this as well correct?

I've never heard of low calcium levels causing epilepsy. The only deficiency known to cause epilepsy is vit. B6 & that doesn't mean that is the reason for your childs seizures.
The only vitamin deficiency known to cause or worsen seizures is a deficiency of vitamin B6 (pyridoxine). This deficiency occurs mainly in newborns and infants and causes seizures that are hard to control.

http://www.epilepsy.com/epilepsy/provoke_nutrition
 
Correction

Apparently low mineral levels can alter brain activity.

Minerals are essential nutrients. Low levels of the minerals sodium, calcium, and magnesium can alter the electrical activity of brain cells and cause seizures.
Just check the previous link I posted.

Remember though that even though they cause neural misfunction if nothing else is wrong that is most likely not the cause.

Mineral deficiency is rare unless there is severe general malnutrition, but the following factors may affect mineral levels in the body:

-Low sodium levels may be caused by medications such as diuretics (water pills) or carbamazepine and oxcarbazepine (Tegretol, Carbatrol, Trileptal), by excessive water intake, or by hormonal disorders.
- Low calcium levels most often result from kidney disease or hormonal disorders. They also may be linked to low magnesium levels.
- Low magnesium levels can be the result of chronic abuse of alcohol and poor nutrition. Low magnesium levels can lead to seizures and also can cause low calcium levels.
 
Direct quote from the link provided at the end of your last post: "Minerals are essential nutrients. Low levels of the minerals sodium, calcium, and magnesium can alter the electrical activity of brain cells and cause seizures."

Not trying to be argumentitive at all......just cant stand irresponsible answers.
 
Sorry, check my previous post. I tried to correct myself.
 
You beat me to that one.......thanks for the correction.

Could the fact that her mother is vegan have a role in a nutritional deficiency like that?
 
It might. I've known a few vegans & they all said that they needed to supplement with B vitamines since that's the one thing they don't get enough of. I can't say yes or no but if it were a calcium (or any type of) deficiency then it would make sense (to me at least) that it would show in the body in other ways as well. If your child is perfectly healthy otherwise then it's probably not a deficiency of any sort. I was born with epilepsy yet otherwise I was perfectly healthy.

As far as deficiencies go, I'd say you should ask your doc or a dietician (not a nutritionist).

I can only imagine how badly you want to know what is causing this in Bristol but it really doesn't help address how things are treated.

My epilepsy was idiopathic (cause unknown) until I was 39 years old when they found a lesion on the hypothalamus (in the centre) of my brain. Even though there's no proof that is the cause of my seizures they wouldn't treat anything any differently since the methods of treatment are the same whether they know what's causing the seizures or not.
 
It would make sence to me also....

My wife has never stopped taking the prenatal vitamins, and Bristol is breastfed....although she has been dabbling with solids for a few months now.

I am just hoping that we can find control if not the cure.......We are considering taking her to John Hopkins in Baltimore for a second opinion, and to look into the Keto diet. We would like to get her off the Pheno all together, as it seems to be slowing down her learning a little(not much, she is still picking up milestones just at her own little pace).....so if we can get the same or better results out of another form of therapy, I think we should explore every avenue we can think of.

God knows i would do anything to help her stop having these seizures every day. I dont know that they will ever go away, but we have to look for answers somewhere.
 
Oh finding the cure would be so beautiful but I'm not optimistic about that happening for a long time.

Good luck with the Ketogenic diet. Do keep us updated on how things go, maybe even document it in the history book.

Something else you might want to check out is neurofeedback. There is no scientific proof that it does anything for seizures as of yet, all the "proof" is anecdotal but it might be worth a shot.

Any other questions feel free to ask. Also keep an eye on The Nursery of this site. Lots of other parents in your situation are there.
 
Did they look into cerebral folate deficiency due to folate receptor antibodies in the blood?
 
It wouldn't hurt to check...diseases don't read books and docs don't know everything.

I am pretty sure there is cerebral folate deficiency due to genetics and CFD that can be due to folate
Receptor antibodies...an autoimmune condition that can occur if the body decides to attack itself. I think
Autoimmunity can manifest itself whenever the conditions are right, no matter what age.
 
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