Dietary changes and seizure control

[KarenB]

We've been doing a 2 year wean off Zonegran. Every 6 months we come down 50 mg. Now down to the last 25 mg. Holding my breath, because it did stop the horrible tonic-clonics, but can't wait to get rid of AEDs hopefully forever. Every single one of them has been physically devastating in their own special way, and only 2 (Topomax and Zonegran) helped at all (and at tremendous price to health, speech, memory, cognition and psychiatric stability).

 

[Bidwell]

I KNOW you are going to get to the end of this but, my lord, what a diabolical dilemma. I will be holding my breath along with you.

I am impressed by the length of time you are taking for the weaning process. My very best, B

 

[KarenB]

Well, we've learned to move at a snail's pace with Jonathan. We've also been lowering the diet ratio in between Zonegran tapers (so he can get more fruit and veggies). Now that his doc is seeing how well he's doing as he's coming off the Zonegran (smiling, making eye contact, not so spastic and agitated, reduced aggression) she's decided she's never going to put him back on it again.

 

[Bidwell]

AND THAT is a BLESSING that you will never deal with one of those little Z capsules again!

 

[KarenB]

natural changes that may be helpful:

1) Keeping blood sugar steady
2) Avoiding high allergy foods
3) Avoiding potential triggers: alcohol, aspartame, msg
4) Low-carb diet (Ketogenic, Atkins)
5) Supplements which may reduce seizure frequency:
- Vitamin B6
- Magnesium
- Vitamin E
- Manganese
- Taurine
- dimethylglycine
- Omega-3 fatty acids
6) To improve cognitive function: thiamine
7) To prevent or treat AED induced deficiencies:
-folic acid
-vitamin B6
-biotin
-vitamin D
-L-carnitene

http://www.ncbi.nlm.nih.gov/pubmed/17397265

 

[Bidwell]

Karen, Thank you for this list. I am glad to see that I am already doing quite a lot of it.

I will bring the list with me to the appointment with the naturopath tomorrow and then the next day to my primary care physician who has stood firm throughout. Thanks to your LAST post, I have slowed down the titrating off the Z quite a lot. The neurologist who disappeared reappeared as represented by her nurse via e-mail. They want to make as if they are involved with my welfare because they are afraid. That that just makes me more anxious and absolutely furious. I am thinking things will calm down soon. This list - Karen -- thank you.

 

[Bidwell]

UPDATE on weaning off Z

I talked to a naturopath this morning who is able to take over the legal duties of prescribing while I titrate off zonisamide. I am very relieved. She told me something this is important for me and may be important for others. She says that toward the end of the weaning period is the time when the body is most generally stressed about the absence of the drug. So the less of the Z there is in me, the slower the titrating process that she recommends. Actually in general she is recommending a rate over two times slower than what the neurologist advised.
I am thankful that she is advising that I continue on the KETO diet w the coconut oil and an addition of 500 mg fish oil. The fish oil is for depression. My medical home [haha] is so dysfunctional that so far nobody outside the system has ever seen the VEEG so why anyone would have an opinion about the presence of seizures is beyond me. Apparently medical records are not transmitted to the doctors from outside the system. However I may get to review the VEEG with my primary care doctor tomorrow. That office claims it has a copy!

 

[KarenB]

I think that's good advice about slowing down the titrating of the Zonisamide as you get to a lower dose. That's pretty much what we have been doing. It's taken us a very long time (2 years) to wean the Zonegran, but it's the one drug I know actually works (compared to the other 10 or so that didn't), and the longer he's seizure free, the higher his threshold.

I do want to say this about med tapers. Back in 2013, when we were weaning Jon off Keppra, he would have a cluster of seizures every time we titrated down a notch. That would last for about 2 or 3 days. And then he'd be seizure free until the next taper. Then, more seizures for a couple days, and then everything would go quiet. When he finally was completely weaned off, he had a couple seizures about a week later, and then that was the last of the seizures.

My theory is that he didn't need the Keppra for seizure control (if anything, it was increasing his seizures). But his body had become addicted to the drug, so, just like a heroin addict goes through withdrawals, Jon did the same as he came off the Keppra. But once it was completely out of his body, he was seizure free.

 

[Bidwell]

Slowing down the titration makes so much sense to me.

That is very interesting about the addictive nature of the drug and I think the naturopath may have been going down that path with me only halfway picking up on her theme. Possibly you could consider publishing about the struggle you and your family and Jon have passed through. You are very clear.

 

[AlohaBird]

I think this is similar to what I've been dealing with trying to ramp down my phenobarbitol.

 

[Bidwell]

The idea that it is at the END of the titration schedule that is when there can be trouble, such as breakthrough seizures and other miseries, makes intuitive sense to me. I have experienced it in many other situations, such as when I quit smoking. It is as if the body makes an uproar against going it alone -- it squawks and you end up where you began.

 

[AlohaBird]

Yes, it does make sense. It is also the time when your body is trying to clean out the last bit of toxic <whatever> so some may be being released from your tissues as well.

 

[Blonde Angel]

My fingers are crossed for you Bidwell.

 

[KarenB]

Lactobacillus & enhanced cognitive function

I think I mentioned this a couple pages ago, but we put Jon on a probiotic about a month ago due to a flare-up of his IBD (Kid's Culturelle Powder, which is Lactobacillus).

So, anyway, we noticed that when he was on it, he was much calmer, less agitated, and less aggressive and more affectionate. I think I mentioned that back awhile ago, and also, after we noticed these happy changes, read a study that had been done in healthy young adults that found that Lactobacillus reduced anxiety...and something else -- I think I posted that link on this thread somewhere.

Anyway, I keep getting notes from Jon's teacher about how well he's been doing on cognitive tasks -- that he's suddenly doing stuff that he'd not been able (or willing) to do before, and is more on task and focused. Obviously, some of that would be from the Zonegran taper in May, but this has been progressive in the past several weeks. Could it be the Lactobacillus?

So, I went looking, and did find this study done on lab rats with hyperammonemia (which can cause encephalopathy, neuroinflammation, cognitive decline and anxiety disorder). Daily doses of Lactobacillus significantly reduced inflammatory markers, restored cognitive function, and improved anxiety-like behavior.
http://www.ncbi.nlm.nih.gov/pubmed/24554471

********
On other fronts, just got the go-ahead from Jon's neurologist for the final wean of Zonegran. If all goes well, in about 3 weeks he will be completely AED free. :banana:

 

[Bidwell]

Go, Karen, Go!!!!

 

[KarenB]

Here's the link to Lactobacillus in healthy adults, where it reduced stress and depression, and improved mood.

http://jeffreydachmd.com/wp-content/...ition-2011.pdf

The beneficial effects of probiotics on anxiety and depression may be explained by competitive exclusion of deleterious gut pathogens, decreases in pro-inflammatory cytokines and communication with the central nervous system via vagal sensory fibres, leading to changes in neurotransmitter levels or function

(bold added by me)

ETA: hmmm...well, the link above doesn't seem to be working. This one references the same study http://www.ncbi.nlm.nih.gov/pubmed/20974015

 

[AlohaBird]

Dr. Perlmutter was citing a study on his website that was done on humans using lactobacillus. It was double blind with the control group getting yoghurt with inactive cultures but the same taste.

After getting the lactobacillus for a certain amount of time (i forget how long) the subjects were then shown photos that were deliberately designed to be scary, menacing faces. Those who had the active cultures showed markedly lower stress response to the pictures.

 

[Blonde Angel]

Yes Karen
I also have my girl on probiotic which I use "Lactobac" capsules which aims to promote healthy digestive function,its non dairy and gluten free.

Its great that lactobacillus has been been improving the behaviour of your son.

Good luck with the gradual weaning of the Zonegran.

 

[KarenB]

Homocysteine levels and AEDs in children

http://www.sciencedirect.com/science/article/pii/S1110863012000560

1. Elevated HCY (Homocysteine) levels cause neuronal cell death,increased risk of seizures, neurotoxicity, cognitive damage and an increased risk of cerebrovascular disease in children and young adults.

2. In this study of elementary age children:
-children without epilepsy had an average HCY level of 5.5
-children with epilepsy but not on meds (newly diagnosed) had an average HCY level of 5.8
-epileptic children on AEDs had an average HCY level of 6
-Children on more than one AED had an average HCY level of 6.7
-the longer children were on AEDs, the higher the levels of homocysteine.

Interestingly, levels of folic acid and B12 were also higher in epileptic children, except that the long the children were on AEDs, the lower the folic acid levels.

The study mentions that one theory for elevated blood levels of B12 in children on AEDs (and especially more than one) is that liver function becomes impaired and the liver isn't able to store B12

 

[Bidwell]

You would think there would be a huge outcry about this.