starting carnitor

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sasasmom

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Hi everyone,
Hope you all had a nice thanksgiving. My daughter has absance seizures and we went to her neurologist the other day for her 6 month check. She has been on depakote sprinkles for a couple months now. They now want to put her on carnitor? they said it is to help protect the liver. Well i did some research and it says for low carnitine levels and if you have seizures you should be careful because it can cause them. REALLY????They have never checked carnitine levels on her but yet wants her to start this. Sometimes I just think that drs like to push pills. Anyone ever taken carnitor? Thoughts are appreciated.

Thanks,
Robin
 
Can you not ask the doctor why s/he didn't take levels & explain as to why you feel they should be taken?

I agree that it seems doctors to like to push pills but they still can be helpful to many of us if we find the right pill at the right dosage.

That said, because everyone reacts differently to all medications other peoples experiences are rather moot to your needs of deciding whether to try it or not. I see more sense in demanding the doctor take the proper steps & get the bloodwork done.

I used to be on depakote & I do respect the fact that your doctor is concerned about the effect it might have on the liver. It's definitely more than my neurologists cared about & I was on the depakote with 2 other liver stressing AEDs.
 
My son is on carnitor for >6 years

Carnitor is a supplement usually given to kids on the ketogenic diet and patiënts with specific metabolic diseases.
Carnitine is produced by the body to help burning fats (lipides.) Kids on the ketogenic diet often need carnitene suppletion to help their bodies burn all the fats they have to eat to reach adequate ketosis.
My son gets two 330 mg tablets levo-carnitine (Sigma Tau) with each meal (3x 660 mg each day.)

There is a carnitene related type of epilepsy caused by low catnitene production.
I guess your doc wants to try it just like they sometimes try vitamine B6 to see if it helpes without checking for deficiencies first.
Most dieticians & doctors want to check carnitine levels before prescribing Carnitor to kids on the ketogenic diet.
To check blood for carnitene levels an expensive lab test is needed which takes several weeks.
My son has his blood tested for several things each 6 months because of the ketogenic diet but his carnitene levels are only tested once a year because of high costs.

Valporic acid in Epilim and Depakote can cause depletion of folic acid, carnitine, copper, selenium and zinc.

Depakote is not a med that 'mixes' well with the ketogenic diet - it is said to cause a type of 'competition' along the fatty acid pathways. Both treatments can lead to depletion of carnitine stores, and carnitine plays an important part in fatty oxidation in the mitochindria. Meaning that if carnitine stores are depleted, the caloric fat from the ketogenic diet cannot be used efficiently as energy for the body and brain.
As already mentioned, both Sodium Vaporate and the ketogenic diet can deplete carnitine and as both compete along the same fatty acid pathways a form of metabolic 'competition' between the 2 treatments can occur, meaning some kids can see full control being elusive until the SV is fully weaned.
But - there is also journal evidence to the contrary which suggests that the 2 can work well together so as with so many other issues with epilepsy, it is definitely not a 'one size fits all' thing, and guaging each child's responses etc on their own merit is usually the only way to know for sure how they will react.



http://pediatrics.aappublications.or...ull/114/6/1627

Although the use of the KD has been considered as an effective therapy for glucose transporter defect and for pyruvate dehydrogenase deficiency, initial fasting was also considered important because it provided an opportunity to screen for some metabolic diseases that predispose to severe hypoglycemic and for some mitochondrial cytopathies that can be exacerbated by the KD.Fatty-acid-oxidation disorders have been considered contraindicated for KD treatment because of increased stress on the respiratory chain and tricarboxylic acid cycle functions. Examples include carnitine deficiency and pyruvate carboxylase deficiency.

Nevertheless, most patients with underlying metabolic diseases can be identified by screening laboratory analyses and a characteristic clinical course. It is noteworthy that the KD has been used successfully in some patients with oxidative phosphorylation disorders and mitochondrial disorders such as Leigh's encephalopathy. Furthermore, some mitochondrial cytopathies can be relieved by the KD.



 
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