The NFC B-Day Chat Thread

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KDOGG331 said:
:hugs @Blooie sorry you are dealing with all this. :hugs

It does seem like the VNS would be a good option, though of course, like you said, if she isn’t aware of them then it might not help.

We actually have some family friends who have a very similar story to you guys and what you’re dealing with right now. Their youngest daughter (I’m kind of friends with all of them, the middle daughter was in my grade) has autism and epilepsy and she used to have tons of seizures and would even get grand mal seizures pretty often which of course was terrifying. She also used to have tons of absent spells in her class and one year someone counted and I think it was like hundreds in one day.

Anyway, I’m not sure of the exact order of which one they did first but they switched to a keto diet or at least a very similar one (I think it’s one specifically designed for epilepsy so slightly modified) and she also has a VNS and both have helped tremendously. I think she switched to the keto in maybe middle school or something, the year with all the absent spells, and then she only got the VNS a few years ago or maybe closer to 4 or 5.

But anyway, both have helped hugely. She now hardly has any seizures and even has gone without them for months, I forget the exact length of time, but it was a long time. They’re much rarer now.

I believe she is also still on some medication and I think also maybe some sort of CBD supplement but even just the keto and VNS helped tons.

And you are right, the VNS there is some sort of magnet thing. I think she wears a special bracelet with the magnet in it and so she just puts her wrist/the bracelet over her chest. It does seem to help and she says she has been able to prevent quite a few of them by doing that but sometimes she doesn’t always know when she is going to have one or off so it doesn’t always help but usually it does.

It has really significantly reduced the seizures but the keto has as well and she also says it really helped get rid of the brain fog and make her able to think clearer which was another plus.


Though of course if Kendra barely eats as it is then you are right that it is probably not the best option for her. But here is a link to the modified diet. I think this is the one she is on but not 100% sure. But I’m pretty sure it is.

https://www.massgeneral.org/neurology/news/newsarticle.aspx?id=4482

I know CBD has really helped a lot of people with epilepsy too if that is a road you are willing to go down. They have all sorts of oils and teas and various other products. I believe there is even an actual drug approved by the FDA now but don’t know much about it. But CBD can really help and does not contain any of the “high” components or anything.

Either way, good luck with your decision. I know it is not easy trying to make the right decision or knowing what to do. :hugs

Oh and also, their doctors told them she would never be able to walk or talk and one of the aids/teachers at school in the special education department told her that she wasn’t learning and it was pointless for her to even be in school. I believe they even called her stupid. So they had tons of people, doctors, teachers, everyone, basically just saying to give up and she will never amount to anything. Well, she DOES talk and in fact once she learned to talk she never stopped talking :lau and she graduated high school and she just graduated college in May with an associates degree. And she can also read books ridiculously fast and you don’t even think she read them but then she can answer any question about it. Loves Shakespeare. Pretty sure she’s read all the plays. Some multiple times. Loves to read and they read books all the time and even have a family book club haha and she is super into musicals right now too. She is a happy, healthy young adult. She even gives talks on epilepsy at schools and stuff so she’s somewhat of a public speaker now too and she even made a promotional video about epilepsy with Julian Edelman. This is the girl who supposedly was stupid and could never learn and would never walk and talk. Now a college graduate and public speaker. And I also heard another similar story recently of someone’s brother who they also told would never walk or talk and he just graduated college too. So never give up hope. :hugs she may never be completely normal but that doesn’t mean she is incapable of doing great things. We have all seen just how smart she is. :hugs

Of course I know that it is probably a bit more complicated with the spina bifida and all of her other health conditions but I am sure she can still make way more progress and be way more independent than the doctors say. :hugs
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KD, this was just an awesome read.
sharron said:
morning dyc,sour,rj,im and sue:frow:frow:frow:frow:frow
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007Sean said:
Morning everyone! :frow

A great day in the morning to, Sharron, Bob, Sue, Cap, IM, Mr. Sour, and DMC! :frow:frow:frow:frow:frow:frow:frow

Hope everyone has a lovely day! :celebrate
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:frow

N F C said:
Good morning everyone! Whew, I actually slept late today (6:30) and that felt good :D
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:frow

If I got some of you twice, please forgive as I've lost track :old
 
N F C said:
When we lived in north FL, the neighbors had a rooster whose crow sounded like the opening bars of the Get Smart theme song...used to crack us up every time.
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OMG that is just hilarious!!

rjohns39 said:
KD, this was just an awesome read.




:frow

:frow

If I got some of you twice, please forgive as I've lost track :old
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Thank you RJ!
 
007Sean said:
When I was raising chickens, they'd start crowing before daylight...like 2:30am or 3:00am. :lau never understood their reasoning for crowing in the middle of the night! :idunno
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They want my husband to stay awake all night so he has another reason to complain about chickens.
 

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