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  #21  
Old 08-13-2015, 09:27 PM
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8-12-15

Originally Posted by Ruth View Post:
Zoe, you said that there needed to be a change of diet guidelines.

I also have kidney problems. Is there any information on that.
Ruth

8-13-15

Hi Ruth,

You may want to try a Google search on each of your meds and kidneys like " name of med" "kidneys" and see what turns up.

Also, have you tried a Google search like "name of your kidney problem" "seizures"? Did your medication cause your kidney problem?
I just tried a few Google searches and most are focusing only on seizures in relation to kidney failure when your situation may not be so drastic. If you know the cause of the kidney problem, you can use that as a starting point to find out how that disorder may influence your seizures and look at ways you may be able to address it with diet.
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Old 08-14-2015, 07:48 AM
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Originally Posted by Zoe View Post:
Hi Karen,
No, I don't think just Mozart, it just happenned to be the one studied for who knows what reason. One that I used a lot is Beethoven's "For Elise," very haunting. I had a copy of it once played on guitar and wish I could replace it
Here's Für Elise on classical guitar https://www.youtube.com/watch?v=3kjEvg_ZkgI

And here's Mozart's K.488 (the sonata that's used for all the studies) in case anyone wants to check it out https://www.youtube.com/watch?v=tT9g...028B30B924A2A9

Jon listened/watched his classic videos for a couple hours last night - he has fever and bad headache, and this seems to soothing for him.
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Old 08-14-2015, 08:07 AM
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Interesting about the specific carb diet -- Jon started the classic Keto diet back in 2011, and after 6 weeks became seizure free, and remained so for a year, and was weaned off meds (which weren't working anyway). Then he got a rotavirus infection, which led to chronic gut inflammation and diarrhea (and a diagnosis of Inflammatory Bowel Disease, and he had a dreadful relapse of his seizures (he's had chronic diarrhea since he was small, but the Ketogenic diet had helped a lot with that). Anyway, he relapsed, and was having about 3 to 7 seizures a day (tonic clonic and tonics and gelastic), and was put back on 3 meds, which made things worse with the gut, and with the seizures -- except that the Zonegran did stop the tonic-clonics. He was having diarrhea every day, and very very sick.

So, thanks to Keith and some other great people here, I started doing a lot of research, and figured out that we needed to fix the gut first. We were living in Thailand at the time, and I found a pediatrician who specialized in nutrition, and so we put him on a sort of version of the initiation of the Specific Carbohydrate Diet (sort of blended with the anti-inflammation diet and Keto diet). And his nutrition doc put him on zinc and probiotics and MCT oil and pancreatic enzymes. And we weaned him off of 2 of the 3 meds (left Zonegran in). The diet/supplement regime cleared up the diarrhea in about 2 weeks, and the seizures started fading away, and within 2 months he was seizure free and down to just 1 med.

Now he still follows the Keto/Spec Carb diet and is gluten free and mostly dairy free except for cheese. He's been doing great with seizure control, except I'm a bit concerned about his present illness, which appears to be a sinus infection -- not good for seizures. His diarrhea is well controlled as long as we're careful to avoid offending foods and use probiotics.
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Old 08-14-2015, 05:39 PM
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Originally Posted by Zoe View Post:
8-12-15

Ruth

8-13-15

Hi Ruth,
You may want to try a Google search on each of your meds and kidneys like " name of med" "kidneys" and see what turns up..
I talked to my neurologist and she told me that 2 of my seizure medicines can cause kidney problems.

They are Neurontin (gabapentin) and Keppra. They are the 2 medicines that are keeping me from status epilepsy. She tried cutting me back on my Neurontin, 2 less a day. I started having seizures.

Thank you for looking for me.
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Old 08-15-2015, 03:33 PM
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Having seizures during a med wean doesn't necessarily mean you need the med to prevent seizures. It may just mean that your body has become a bit addicted to the med.

When we were weaning Keppra, Jon had a cluster of seizures every time we tapered. That would go on for one to three days, then things would calm down again. But we kept on weaning. When he was finally off Keppra, he had 2 more seizures in the following week, and that was the last of the seizures (none for 2 1/2 years now).

I was determined to wean Keppra because 1) it seemed to make the seizures worse rather than better, and 2) he had the classic "Kepprage" while on it.

In the case of a med that definitely improves seizure control (when first put on it), but also is causing serious side effects, sometimes the side effect can be tended to by aggressive intervention. Zonegran did help Jon - stopped his tonic-clonics on first dose. However, it also caused serious acidosis, which could lead to kidney disease, among other things. So, he had to drink 8 cups of water a day, that were mixed with lemon or lime juice, 1/2 tsp baking soda and 1/2 tsp Morton Salt Substitute (Potassium), and sweetened with Stevia leaves (brewed). This helped moderate the acidosis. We also modified his diet a bit so he was getting more veggies and fruit, and took out most of the dairy.

After Jon was seizure free for awhile, we began a slow wean of the Zonegran -- a very slow wean -- as in 2 1/2 years. He just had his last dose yesterday. And the acidosis seems to be gone for good.
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Old 08-15-2015, 04:56 PM
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Originally Posted by KarenB View Post:
Interesting about the specific carb diet -- Jon started the classic Keto diet back in 2011, and after 6 weeks became seizure free, and remained so for a year, and was weaned off meds (which weren't working anyway). Then he got a rotavirus infection, which led to chronic gut inflammation and diarrhea (and a diagnosis of Inflammatory Bowel Disease, and he had a dreadful relapse of his seizures (he's had chronic diarrhea since he was small, but the Ketogenic diet had helped a lot with that). Anyway, he relapsed, and was having about 3 to 7 seizures a day (tonic clonic and tonics and gelastic), and was put back on 3 meds, which made things worse with the gut, and with the seizures -- except that the Zonegran did stop the tonic-clonics. He was having diarrhea every day, and very very sick.

So, thanks to Keith and some other great people here, I started doing a lot of research, and figured out that we needed to fix the gut first. We were living in Thailand at the time, and I found a pediatrician who specialized in nutrition, and so we put him on a sort of version of the initiation of the Specific Carbohydrate Diet (sort of blended with the anti-inflammation diet and Keto diet). And his nutrition doc put him on zinc and probiotics and MCT oil and pancreatic enzymes. And we weaned him off of 2 of the 3 meds (left Zonegran in). The diet/supplement regime cleared up the diarrhea in about 2 weeks, and the seizures started fading away, and within 2 months he was seizure free and down to just 1 med.

Now he still follows the Keto/Spec Carb diet and is gluten free and mostly dairy free except for cheese. He's been doing great with seizure control, except I'm a bit concerned about his present illness, which appears to be a sinus infection -- not good for seizures. His diarrhea is well controlled as long as we're careful to avoid offending foods and use probiotics.
Hi Karen,

I hope in time your son's diarrhea will be gone along with the current infection. Thanks for the links!
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  #27  
Old 08-16-2015, 05:56 PM
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Originally Posted by KarenB View Post:
Having seizures during a med wean doesn't necessarily mean you need the med to prevent seizures. It may just mean that your body has become a bit addicted to the med.

When we were weaning Keppra, Jon had a cluster of seizures every time we tapered. That would go on for one to three days, then things would calm down again. But we kept on weaning. When he was finally off Keppra, he had 2 more seizures in the following week, and that was the last of the seizures (none for 2 1/2 years now).

I was determined to wean Keppra because 1) it seemed to make the seizures worse rather than better, and 2) he had the classic "Kepprage" while on it.

In the case of a med that definitely improves seizure control (when first put on it), but also is causing serious side effects, sometimes the side effect can be tended to by aggressive intervention. Zonegran did help Jon - stopped his tonic-clonics on first dose. However, it also caused serious acidosis, which could lead to kidney disease, among other things. So, he had to drink 8 cups of water a day, that were mixed with lemon or lime juice, 1/2 tsp baking soda and 1/2 tsp Morton Salt Substitute (Potassium), and sweetened with Stevia leaves (brewed). This helped moderate the acidosis. We also modified his diet a bit so he was getting more veggies and fruit, and took out most of the dairy.

After Jon was seizure free for awhile, we began a slow wean of the Zonegran -- a very slow wean -- as in 2 1/2 years. He just had his last dose yesterday. And the acidosis seems to be gone for good.

Karen,

It is amazing that you are so informed about the side effects of the anticonvulsants and how they can end up triggering seizures. I did some very slow weaning off of my anti-epileptic drugs, much safer in the long run. Dairy was one of the first foods the hospital dietician suggested I stop using and it made a big difference. It stopped the seizures that caused heart arrythmia and extremely severe panic attacks.
As long as Jon is careful with his diet there's hope the acidosis is gone forever. A lot of the information on the med side effects I did not learn til years after I stopped using them.
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Last edited by Zoe; 08-16-2015 at 05:59 PM. Reason: correction
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  #28  
Old 08-17-2015, 06:08 AM
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I know what you mean -- a lot of the side effects of anti-epileptic drugs are obvious right away, but some are insidious - working their evil quietly inside the body. Like damaging the liver, raising homocysteine levels, increasing risk of cardiac and vascular diseases, depleting the body of folate and B vitamins, etc. How many neurologists warn their patients about these effects? I only know about them because of coming onto this forum several years ago, and realizing that I was going to have to be much more proactive in research and in determining the course of Jon's treatment.

In Jon's case, most of his meds weren't doing anything to stop the seizures anyway, so the diet was sort of the last resort. But I wish I had implemented it much earlier, before Jon suffered so much brain damage.
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  #29  
Old 08-18-2015, 06:40 PM
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Karen,

How much of the brain injury do you think is from drugs? What other injuries did he get from the meds? How is Jon doing now with his meds, diet, and seizures? Is he on any meds for the IBD? What strategies are you using to help him overcome his brain injuries?

My GI tract was severely damaged from massive doses of antibiotics used to treat the spinal meningitis that was a "complication" of my first brain surgery in 1982. I developed what is now called toxic or drug induced ulcerative colitis.

There are virtually no drugs my damaged system can tolerate, prescribed or over the counter. Back then medicine for IBD was minimal. I was never prescribed anything but a high fiber diet. Later, after making diet changes for seizures and then using the SCD diet, I overcame the IBD completely. I had my first colonoscopy in 2005. At that time I had some inflammation and a few polyps that were removed, but no ulcerative colitis whatsoever.
I have had some major recurrences from infections and attempts to use drugs. About a year and a half ago I had an extreme adverse reaction to a single dose of Fluconazole for a yeast infection. Again very severe ulcerative colitis made worse by spine and spinal cord injuries from a wreck, which affect the nerves regulating bowel and bladder. As before, diet, yoga, and physical therapy are proving to be the safest and most effective route to healing.

The SCD diet has a good (anecdotal) record with stopping the diarrhea. That, with probiotics, and a few herbal treatments like the gel that forms in tea made from slippery elm bark, and now, agar agar gel were very helpful in stopping the bleeding and diarrhea. If you have never read the first section of Gottschall's book on the SCD, "Breaking the Viscious Cycle," you may want to do so. She gives a very clear and succinct overview of what breaks down when intestinal disorders develop and how diet can reverse the process and lead to healing. She wrote this before probiotics, and there were a few things I would question. However, without a doubt the diet has helped thousands of people.

There's another diet recently studied that uses much from the SCD:

Nutrition Journal | Full text | An anti-inflammatory diet as ...
www.nutritionj.com/content/13/1/5
by BC Olendzki - ‎2014 - ‎Cited by 10 - ‎Related articles
Jan 16, 2014 - The Anti-Inflammatory Diet (IBD-AID) is a nutritional regimen for inflammatory bowel disease (IBD) that restricts the intake of certain ...
‎Abstract - ‎Introduction - ‎Materials and methods - ‎Results
http://www.nutritionj.com/content/13/1/5


What are your thoughts on Jon continuing to recover from his brain injuries? When much of my brain was destroyed the current doctrine was that brain damage is irreversible. This is now known to be not true. The brain is constantly repairing itself, we just need to learn how to facilitate the process.
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Old 08-19-2015, 06:23 AM
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Originally Posted by Zoe View Post:
Karen,

How much of the brain injury do you think is from drugs? What other injuries did he get from the meds? How is Jon doing now with his meds, diet, and seizures? Is he on any meds for the IBD? What strategies are you using to help him overcome his brain injuries?
Interesting question. Between the age of 5 to 6, Jon had about 4 tonic-clonic seizures -- not a lot of seizures, but during that year, he went from speaking in sentences to speaking about 10 words. He still understood spoken language, but the part of his brain responsible for word retrieval and/or producing speech was apparently damaged. He also became mildly aggressive at this time. At first his doctors thought he had Landau-Kleffner, but that was ruled out as he didn't have the characteristic spikes on his EEG. My suspicion is that it wasn't so much the seizures that caused the loss of expressive language, but the Topomax he was on at the time. He'd been on a low dose since age 2, but once the seizures came back, his dose was raised until it was at a very high level. Topamax can cause language difficulties. But another thing -- it may have been late-onset autism causing the language regression and aggression (he was diagnosed with autism at age 10). I never heard of autism having an onset as late as 5 years old, but he was making steady developmental progress right up to that point, and then everything sort of stagnated or regressed.

When Jon was 6, he got the DTap booster, and then everything really went to Hell. He went from one seizure every month or two, to several seizures a week, and then that progressed to multiple seizures a day.

Other injuries Jon got from meds were liver damage (Depakote), med-induced mental illness including severe aggression & severe hyperactivity to the point that he couldn't even sit still for 30 seconds -- this eased off once he was off the meds (Trileptal, Diazepam), Kepprage and depression (Keppra), increase in seizures (Trileptal, Diazepam, Keppra), severe stomach upset (Zonegran), cognitive deficit (Depakote, Zonegran). Since Jon has been weaned off the Zonegran, his neurologist is amazed at how much happier he is, at his improved eye contact, etc.

Jon is now completely anti-epileptic drug free -- as of this week

He continues on the Ketogenic diet (blended w/ Spec Carb & Anti-Inflammatory). He hasn't had a seizure in 2 1/2 years.

The GI doc that diagnosed his IBD didn't know what to give him that wouldn't cause issues with seizures. So, his nutritional pediatrician worked with us on the Spec Carb diet, pancreatic enzymes (he wasn't absorbing fats, and the enzymes break the fats down to smaller molecules), zinc and probiotics.

My main focus on overcoming brain damage is increasing neuroplasticity and trying to bypass the part of the brain that was injured. Using diet and supplements that are neuroprotective and maybe neuroregenerative. A lot of music therapy. I've been trying for years to find a speech pathologist who will focus on regaining speech, but they only want to work with augmentative devices to replace speech. I'm very interested in what Beth Israel in NYC is doing with autistic kids, using musical drums to elicit speech. I am trying to replicate it at home, but not quite sure how to do it.

Last edited by KarenB; 08-19-2015 at 06:25 AM.
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Old 08-19-2015, 10:42 AM
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Karen, regarding "Using diet and supplements that are neuroprotective and maybe neuroregenerative," I've wondered if sulfur like OptiMSM would be helpful as it's required along with vitamin C for collagen synthesis. Also, I've wondered if hyaluronic acid would be a good thing for healing, actually both gut and brain. It's a GAG where sulfur and, I think, silica are components.
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Old 08-19-2015, 03:56 PM
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Interesting thought about sulfur. I was looking into that a week or so ago, and then got sidetracked and forgot to pursue it. Zonegran (which did work to stop Jon's tonic-clonics, but which he was just weaned off) is a sulfonamide -- contains sulfur.

ETA: was trying to remember why I was looking up sulfur to begin with, and just now remembered because of it's anti-inflammatory properties. Very high in meat, fish, garlic, onions

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Old 08-20-2015, 05:23 PM
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Originally Posted by KarenB View Post:
Interesting thought about sulfur. I was looking into that a week or so ago, and then got sidetracked and forgot to pursue it. Zonegran (which did work to stop Jon's tonic-clonics, but which he was just weaned off) is a sulfonamide -- contains sulfur.

ETA: was trying to remember why I was looking up sulfur to begin with, and just now remembered because of it's anti-inflammatory properties. Very high in meat, fish, garlic, onions
Karen,

In the late 1990s I saw a neurologist who had participated in some of the research on L-Taurine. He noted that adding the taurine as a supplement seemed to work to correct something gone wrong with metabolism. He suggested that this imbalance is sometimes corrected in about two years, when I began to taper off on using it.

The amino acid, L-taurine, does have some history and research behind it for use with seizures, more recently for Tourette's syndrome. As I wrote earlier, this amino acid is what put a final end to my partial seizures leaving me seizure free since 1998. In the book, "The Healing Nutrients Within, (about amino acids)" there is a lot of information on L-taurine and some of the earlier research that is well worth looking into. It looks like the book is now available online on google books:

The Healing Nutrients Within: Facts, Findings, and New Research on Amino Acids Eric R. Braverman, Carl ... TAURINE LOADING Taurine is a well-absorbed amino acid with few side ... and symptoms of taurine deficiency include epilepsy, anxiety, hyperactivity, and impaired brain function. Availability Free-form L-taurine is available in 500 mg capsules.
https://books.google.com/books?id=-t...ilepsy&f=false


In "Epilepsy: A New Approach: What Medicine Can do; What you can do for Yourself," the authors write about using L-taurine on page 172: "The amino acid, taurine, occurs naturally n the body as a by-product of metabolism. it is not one of the eight essential amino acids. However, it's importance has recently been recognized, and it is now being adde to commercial infant formulas such as Similac to make them more equivalent to breast milk, which is rich in taurine. In the brain, taurine helps to stabilize nerve cell membranes and prevent the neurons from sending too many impulses too fast, which is what happens in a seizure. Taurine is closely associated with manganese, and it may work with manganese to alleviate seizure conditions."

On page 174: "Taurine: Certain esential brain chemicals are metabolized from protein. One of these, taurine, has been taken as a supplemental therapy with success in reducing seizures."

There are some possible side effects, Which the authors note on page 173 where they suggest using 500mg A.M and P.M.: "For some people taurine in such high dosages may give some peptic ulcer distress. It disappears when the Taurine Is Discontinued. "
took it for several years at higher doses before having any GI distress and stopped using it. I do use it for periods of time now when it seems like I might benefit from it.

The following Google searches will turn up more good information on this topic:

"sulfur amino acids" "seizures"
"l-taurine for seizures"

Reading the earlier research gave me a lot of insight into how diet and anticonvulsants may factor into triggering seizures. One last link here:

Prevention of epileptic seizures by taurine.
www.ncbi.nlm.nih.gov/...
National Center for Biotechnology Information
by A El Idrissi - ?2003 - ?Cited by 78 - ?Related articles
Prevention of epileptic seizures by taurine. El Idrissi A(1), Messing J, Scalia J, Trenkner E. Author information: (1)New York State Institute for Basic Research in...
http://www.ncbi.nlm.nih.gov/pubmed/12908638
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Old 08-20-2015, 08:17 PM
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Quote :
In "Epilepsy: A New Approach: What Medicine Can do; What you can do for Yourself," the authors write about using L-taurine on page 172: "The amino acid, taurine, occurs naturally n the body as a by-product of metabolism. it is not one of the eight essential amino acids. However, it's importance has recently been recognized, and it is now being adde to commercial infant formulas such as Similac to make them more equivalent to breast milk, which is rich in taurine. In the brain, taurine helps to stabilize nerve cell membranes and prevent the neurons from sending too many impulses too fast, which is what happens in a seizure. Taurine is closely associated with manganese, and it may work with manganese to alleviate seizure conditions."

On page 174: "Taurine: Certain esential brain chemicals are metabolized from protein. One of these, taurine, has been taken as a supplemental therapy with success in reducing seizures."
I wonder if this indicates that people with seizures should ingest more protein or if perhaps they are somehow deficient in processing/absorbing the protein they do ingest. Hmm.

That's a really good book. It sort of started me off on this path. I think I'll go back and read it again.
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Old 08-20-2015, 10:19 PM
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The brand of L-Taurine I use is by a brand called Healthwise, I use the powdered version, easy to mix with other nutrients and not sweet as the Liquefy Taurine that's 500mg/ml version by the pharmacist.
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Old 08-20-2015, 10:26 PM
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I'm not sure if it's expensive to utilise a dietician but I found it helpful to use them to do plans.. Food lists in understanding the foods that will irritate the bowel. There's some foods I know will trigger runny stools eg. Mushrooms have high of osmorality, peas and corn can go through her. Apples are not good for irritable bowel.
What's healthy may not make a gut happy.
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Old 08-20-2015, 10:38 PM
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Corn is also high in glutamate so that is something I avoid for seizure control even though digestively I'm fine. Peas and corn are also high in carbs for the amount of nutrients you get.
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Old 08-20-2015, 10:59 PM
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Karen
I've noticed in your post that you are not keen to use augmented communication device for your Son.
My experience has been this, I've never stopped the ongoing speech therapy sessions, that's ocurred since her early intervention days. Therapy is big business and I know I don't need to tell you that some methods work and some don't . I had Applied Behaviourial Analysis (ABA) fine and with lots of $$ it really did not work for my girl.
We have set up distinct receptive and expressive language goals. Her receptive skills are not to be underestimated.
The vantage device is her " voice", it enables her on her terms to communicate her needs and wants.
Do I want her to talk ? Yes yes I do, but my girl understands that she can use her vantage lite to respond to a question or interact with others. Does she need prompts sometimes? Yes, but her behaviours and frustration have somewhat decreased...not eliminated but decreased.
I was initially not keen, but a therapist told me this " if your child requires a wheelchair would you deny that right to be mobile?" It's my girls voice and it's better than nothing.
The school she attends understands the importance of music and a teacher comes in to do work with each student and in small groups . This girl loves the harp a brilliant smile that makes her day, I have kept a video they did.

Communication is a priority when it's about Autism. Verbal or nonverbal....
Never forget the following:
.PECS ( picture exchange communication, symbol boards or books
.keyword sign and touch cues
.object and music cues
.Relationship based approaches like Intebsive Interaction or Floortime..last but not least our technology... Big Mac switches, iPads, Prologuo2Go, Tap it and Vantage Lite.
Those With autism and or other disabilities are NOT by large living in our world of thought and language.
Rather, they live in a world of sensations and actions. They do not begin to connect with people by talking. However, they connect with their many possible behaviours, such as sounds, motions, expressions, touches and postures.
The job is about helping them build a communication habit, with frequent, fun, social play and turn taking without many words from us. We need to develop motivating and fun relationships by joining in what the child..
LIKES TO DO AND CAN DO.
Is it easy ...nooooooooo.

Last edited by Blonde Angel; 08-20-2015 at 11:02 PM. Reason: Missed words spelling..
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Old 08-20-2015, 11:08 PM
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Another thing..
I take my hat off to today's teachers, they do have a tough job, even with the kids that don't have special needs.
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Old 08-21-2015, 05:29 PM
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It's not that I'm against augmentative language devices -- it's that it's the only thing that he's being trained to do. They're not doing anything to help him regain his lost speech. If you had a stroke victim, you would work with that person to regain speech. But they seem to think that Jon ever speaking again is a hopeless case. They said they never hear him saying anything at school -- until the day I walked in and he said about 5 or 6 words within 5 minutes.

Jon has learned the PECS system, and we use that at home and school. Except that every once in a while (only at home) he'll say the word instead of reaching for the picture cue. He was doing well on a Big Mac for awhile, but then he kept pushing it off the table on the floor, so they're not using that at school anymore.
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