Just want some thoughts....

[Auctions]

I've been here on and off for two years. My daughter is now 17- two years ago she started TCs. After 3 months they were controlled - 3 meds. However, she has started having little 5 second seizures - where she can't talk and feels gone. They have been getting more and more frequent. Some days none but most days one or two with some days like 12.
I sorta dropped the ball feeling huge relief when the TCs stopped. But now her Neuro is saying she is failing her meds and talking VNS. She is right now doing a 3 day video EEG. After which I think they will tell me what they think to do. They believe her seizures are frontal lobe seizures and in their opinion usually untreatable.
I've been reading a lot. I am thinking several things and would like any advice-
1- I want another MRI- she hasn't had one for 2 years. I wonder if they missed something or something has changed
2- I am very curious about the 6 hour regimen- meaning taking meds 4 times a day rather than 2.
3- should I give CBD a chance before the implant?

In the end - all thoughts welcome and please tell me if I am missing something. She's on Keppra (failed and waiting to wean)- just stopped Tranxine- added Triliptal- and is on lamictal.
I think it's time I get super aggressive about this and stop just hoping she gets better because they flat out said she isn't.
It was just so easy to dismiss these tiny seizures after the 10 minute TCs !
No other health issues we know of than kidney stones.
Thanks


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[seagull]

If in your position I would be brining me big guns out she be 18 soon and your rights as parents deminish .if you got gut feeling then go with it...Also kidney stones not very nice poor girl they can be agony

 

[resaebiunne]

It sounds like your daughter is having absence seizures. One thing I have learned from my dealings with multiple neurologists now is that there tends to be this balance between seizures and medications. Is it worth controlling seizures that are so minor when the side effects of a medication can be potentially very severe?

To me, a VNS would be a last resort, after you have tried all possible medications and combinations of medications. You mentioned a few names, but there are many more medications that should be tried first.

The change in seizure type is not uncommon. I typically have focal seizures, and do so on a daily basis. Back in July of this year, that changed for the worse when I had at least 3 tonic clonic seizures in the space of a week. Before July, I have never had a tonic clonic seizure. Medications can stop working or become less effective for a variety of reasons. Has her diet changed? Have horomone levels increased or decreased? Are you deficient on any vitamins/minerals? There are a lot of variables at play so it could be a combination of factors.

 

[AlohaBird]

Res, my friend, spot on ^^^^^.

Yes, any medication has side effect some of which can be brutal and immediate and some of which can be subtle and not felt until years down the line (like osteoporosis).

I completely agree that putting any part of your central nervous system under a knife should be the absolute last resort after giving all pharmaceutical and diet based options a serious try. Some people do brilliantly with a VNS, some have no change, and some actually get worse. That might be a gamble worth taking when you are out of options.

Dietary changes can definitely be a factor in why a medication stops working as can the hormonal changes you mentioned. In a 17 year old, both of those can be all over the place. Hormones running rampant and Mom's good healthy cooking is no longer cool compared to pizza and sodas with friends. (note: I'm not saying that is the case here, just that a lot of teenagers go through this phase.)

You are far from out of options. Try the CBD, try the dietary approaches (there are several, keto, MAD, GI, low carb paleo, etc).

My experience on CBD extracts is that they didn't do much for me. Recently I have been using something called Holden's Hope which is a high CBD/low TCH cannabis plant simmered at low temp in coconut oil then ground all up together to make a paste which has been working wonderfully.

The whole plant seems to work better than the extracts. In the literature, they call it "the entourage effect" meaning all these components are in the plant and we really don't know how they work together and interact. When we try to extract one out, the entourage effect is lost.
This Holden's Hope stuff has a low enough TCH content that it is legal in all 50 state and they ship.

I wish the OP's daughter health and healing.

 

[masterjen]

Hi, Auctions;
Considering splitting medication doses into more than just twice per day dosing, like you mentioned, is a great idea. Not everyone fits the mold of "the standard", whether it be amount of medication it takes to improve seizures or the number of doses per day of a medication that improves seizures. The hardest part is dealing with the neurologist in the event s/he is resistant to going against standard protocol. If there is not a significant health concern that the neurologist can give for increasing the number of doses per day, I would say it is worth a try. I am working on this exact issue with my neurologist right now - I wanted to jump right from twice per day to four times, but agreed to the intermediate step of 3 times per day first.

As for the MRI: if nothing showed on her first one two years ago, it can be difficult to convince the doctor of the need for another one this soon but I say give it a shot. I know I do my best to get one every two years.

I have never had brain surgery nor have I tried CBD, so my following opinions are not from experience. It is important to know that surgery comes with risks and the effect of many of those risks is generally permanent. Something like a highly purified form of CBD (eg. Charlotte's Web) is no different than a medication in that if it doesn't work or has undesirable side effects the person can stop taking it.

 

[valeriedl]

I was diagnosed with epilepsy in 2003, when I was 27. I was having at least 20 complex partials a month that lasted around 10 minutes or longer. I don't know how many simple partials I was having a month because I really didn't know what they were then but I know I was having a good many. I was having around 5, maybe more, tonic clonics a year.

For 5 years my neuro tried all sorts of different meds, combinations and dosages but nothing really seemed to help. I was unable to have brain surgery so he suggested trying the VNS, which I did.

Since I've gotten it I'm having around 7 complex partials a month and they aren't nearly as bad as they were before. I'm also having simple partials but they only last a minute or two. I have about 3 tonic clonics a year. I'm also still taking meds along with it. It took a while to figure out what settings to have the VNS at and what meds to take. In my opinion it's helped me a lot.

1- I want another MRI- she hasn't had one for 2 years. I wonder if they missed something or something has changed
2- I am very curious about the 6 hour regimen- meaning taking meds 4 times a day rather than 2.
3- should I give CBD a chance before the implant?

The VNS does work great for some people but for others it may do nothing or have reverse effects. If you would decide to get a VNS it can't be taken out, just turned off. You are also unable to get an MRI once you have it put in. It's something that you would have to really think about getting if you would decide to get it.

I would defiantly insist for 1 and 2 and find out the results from them. I've never tried 3 so I really can't tell you about that and I don't know how long it would take to find out if it would work or not. If it takes a long time and you are worried about her still being a minor before making decisions on getting the VNS, any sort of testing or anything else then it might not be something to do.

 

[Ruth]

Welcome to CWE, Auctions.

This forum was made out of love by Bernard for his wife Stacy. That love permeates throughout the whole forum.

 

[Ruth]

She has kidney stones? Did you know that Keppra causes kidney problems? When did she have the kidney stones, before or after she started the Keppra?

:hugs: