Liver Health

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He has absolutely no refined sugar in his diet, and no starches either -- he is on the Ketogenic Diet -- he gets about 10 carbs per day. All of that is worked out on a calculator, and measured out on a scale. We have gone through dietary issues with a fine tooth comb, and not finding a link.

He is now having multiple seizures at night. Today he went to the Pediatrician, and she confirmed precocious puberty, which may be triggering the seizures, or at least lowering the seizure threshhold. Also, the reflexes on the right side of his body were not good today (after a night of tonic clonic and clonic seizures).

He goes to the Neurologist and Endocrinologist on Thuirsday to try to figure out what is causing the early puberty. He only weighs 44 pounds and hasn't even lost his baby teeth.
 
I will pray the Neurologist and Endocrinologist can find a link to give direction to help your Son.not easy for you....so sorry.

do you give him suplements of any kind?
 
I have no doubt Karen that you have searched the earth to help your Son and the diet is very strict, much respect to you...

My Son is taking many of the attached supplements, if only to protect him. My Son does not have any other brain impairment (other than E) ...that we know of.


http://www.ncbi.nlm.nih.gov/pubmed/14729002

My Mother for most of her working life looked after a house full of Down syndrome adults most of which also suffered with epilepsy. And they led full happy lives, a joy to see and be part of.
 
Chaz -- glad to hear your son has no impairment.

Jon takes Nutrivene D, which is a multi-vitamin that also contains supplements such as Carnitene. Carnitene is usually recommended for kids on the keto diet.

We have to be careful with supplements, because many of them contain carbs, so that has to be calculated in. And...then you run into the issue...do I take out healthy veggies and fruit so I can have enough carbs to put in the supplements??

Yes, most people with Down Sydrome do have a good quality of life -- an inner joy and appreciation of the small things in life - I think we can all learn from them. Jonathan used to be a child full of happiness -- always smiling, but sadly his quality of life has deteriorated a bit with the seizures, meds, and now whatever is causing his recent afflictions.
 
Karen - I will be praying (in my rosary) that the road leads to Jon's return to being the child full of happiness he (above all) and his family so well deserves.
 
So, how does one go about protecting their liver if they are taking AEDs? (I took dilantin in the past and now take Keppra, but due to side effects, I am thinking of going back to Dilantin)

I've read some of you post that normal liver enzyme blood tests may not tell the whole liver story, so what does one need to do (or what type of testing) does one need to do to ensure the health of their liver? Is there a particular type of doc who might be more helpful than others?

I've found it truly troubling how little my neuro seems to know about other areas of the body that can be affected negatively by AEDs. In his words, he treats the seizures and the epilepsy, and he doesn't know about the other things, and he wouldn't know what to test or how to interpret the results or, if they came back abnormal, he wouldn't know how to treat. In other words, if it doesnt do directly with seizures in the brain, he knows nothing.

When I've spoken to other specialists (endocrinologists and urologists), and when I tell them I'm on seizure drugs, they always ask if I've spoken to my neuro about all of this. It seems we're stuck between the specialists and their lack of knowledge.
 
Dignan

we all so unique, if there is any chance you can see a naturopath to guide you, that would be safest best.. and me NO doc….

milk thistle is a good start to research, it can make your meds work even better as your liver heals...so research please..


Kombucha Essence- is what my Son has been using for few months now for his liver recommend by his naturopath, we are seeing huge improvement, but he also was on strict/ restricted diet (he undergoing overall cure, which already 4 months running)

I challenged my son neuro at his last visit about his liver, hospital blood tests came back within reasonable levels so was no issue in his files but private check showed something very different, , he openly said, side effect of the med, at least he was honest..
 
Thanks for the info Chaz. When you say naturopath do you mean an ND? Or, just a regular MD or DO that takes a holistic approach?

I also heard a hepatologist specializes in liver issues. Has anyone gone to one of those guys? Is that necessary?
 
FYI, everyone, I just had an appointment with a neurologist and I brought up the idea that some of my side effects could be liver related even though my liver blood work came back normal.

The neurologist said that is what they use to determine if there is a problem, so if the blood work is normal then everything is okay. I asked if there was any chance it could be normal but there may be an issue that could be detected with some other type of test (thinking of ultrasound or something else) and he said flatly no.

Not sure who to believe here, but he definitely doesn't want to investigate anything further if the blood work is normal.
 
OK Dignan, and this is the same guy who "treats the seizures and the epilepsy, and he doesn't know about the other things, and he wouldn't know what to test or how to interpret the results or, if they came back abnormal, he wouldn't know how to treat?"

You're right that liver enzyme tests don't tell the whole story.

Jon's current med (Zonegran) affects his kidneys more than his liver. And his neurologist is very strict about having an ultrasound of his kidneys done at least once a year.

The only thing...if you're on Keppra...that usually doesn't affect the liver (or other bodily organs) so much. That why docs like it so much...the worst side effects are emotional (which can be pretty devastating for some of us). I'm not sure about Dilatin.
 
Actually, this was a different neuro than the one who said the things in the quote you cited. I went to this guy for a second opinion on everything, but I thought it relevant in that it shows how difficult it can be to find a doc that looks beyond the standard tests.

I wish I could find someone like your son's doc who seems to understand the need to watch these things closely and willingly does other tests, just so they can catch anything that might come up.

BTW, I hope I didn't hijack this thread, as it is meant for everyone to discuss their liver health and not my doc issues..
 
When Jon's liver enzymes went up into the 200 range, he sort of shut down (stopped talking, became disinterested in anything, stopped doing anything at school). He started crying all the time, which was unusual for him. I think he was probably in some sort of pain, but he'd stopped talking, so never could find out if and where it was.

The problem with liver disease is that you can have normal enzyme levels, and have few or no symptoms until everything gets quite bad.

Some symptoms of liver functioning problems can include:

1) Nausea/vomiting (especially after a fatty meal)
2) Abdominal pain in right upper area
3) Jaundice
4) Fatique and/or weakness
5) Weight loss
6) Easy bruising
7) Itching
8) Enlarged breasts and/or impotence in men
9) Confusion and/or lethargy
10) Fluid build-up in abdomen
11) Muscle wasting

Some of these symptoms (esp. 4, 5, 6, 9) can also be caused by seizure meds
 
I am wondering if anybody has had experience with elevated Liver Enzymes?
I would think that the drugs must have something to do with it but I am not a doctor.
Also, does anybody else who is medicated within an inch of their life have problems with Chronic CONSTIPATION? and low ferritin stores with a normal Hemoglobin count.
Life is fun!
 
my Son doc would not measure liver - only if non conform suspect, he says if u on the meds expect to see a burdended liver... :( he is honest...

constipation can be healed with diet....even if on meds..my humble 2 cents...
 
Liver Enzymes

Thank you.
I was not terribly concerned since I am on a lot of AED'S and the increase was minuscule.
TYLENOL........ now there is a really serious liver toxin!
Cheers,
Deedee
 
I'm trying probiotics.
It seems like my skin is more susceptible to minor tears as well.
The probiotics seem to give me a little more energy and a little less constipation.
 
I'm just jumping in here so I'm not sure what's been suggested already :) But, my primary care physician shares in the responsibility for my labs and always runs routine (every 4 months) tests on A) my kidneys, B) my liver, C) blood counts, and D) my Vitamin deficiencies. It's sooooooo important to know your levels! Anticonvulsants rob our bodies of nutrients that are crucial for optimal health. A big one is B-12 or Folic Acid. Another is Vit D. Both help with neurological function and immune health. I'm glad the probiotics are helping :)
 
My Gen MD told me trileptal causes the nerves that cause intestines to move the food along not work. She actually asked me if I had constipation. I hadn't brought it up. Is there anything these darn drugs don't cause?
 
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