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Joined: Nov 2007
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trudi Offline OP
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My 8 yo had a grand mal Friday morning and totally freaked us out. An ambulance rid to the ER and a 6 hour visit there told us nothing. They said GET HER TO HER PEDIATRICIAN TO GET A CONSULT TO A NEUROLOGIST ASAP and that was about it. grrrr.... no brain tumors (pfwhew!) and researching online, it appears she's has partial seizures her whole life.. AND it looks like my eldest did too!

I'm a little frustrated with the medical community for constantly treating me like an idiot mother.... I've brought up those strange symptoms to docs thru the years and they all blew me off.

This is the same thing I've gone thru with my 8you her whole life... I KNEW things were not right... but it has taken YEARS for them to come to the same conclusions.... everything from

~ her shaking upon waking up,

~ her strange crying spells,

~ when she went nephrotic she filled with water fast (edema) and the docs didn't believe me,

~ her short stature/features turned out to be turner's syndrome...
...etc....

How is it that today's society is so filled with educated people that look down their noses at 'uneducated' people and totally disregard our instinct/observations.

And I HATE that when I want to choose to NOT fill her with toxic drugs that are known to do more harm than good, I am again an idiot and am making bad choices because I don't know any better...

(I am VERY concerne about putting her on anti-seizure meds, and the pediatrician told me 'yes, those are dangerous drugs, but it is also dangerous for her to have seizures because she may have another grand mal and hurt herself when she falls....)
hmmm.... poison her inside with drugs that often gives MORE grand mal seizures, or allow her to be drug-free and 'maybe' she'll have another grand mal....?? I think I'd rather try cannibus on her instead!



I may have been born at night.. but it wasn't LAST night!!


ok....rant over.....


~ Trudi: homeschooling mom to 6: 16,14,11,9,7, 6 mos


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Lon Offline
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Trudi,
My dear friend.
You must continue the struggle of caring for those kids. Our modern medical treatment can be very disappointing. You are capable and must persue the course you understand. It isnot you
I have always "seen stars", forgot things that are so obvious and at times been so frustrated at not being able to do what I did yesterday.. not seizures like you mentioned, but literally lost it for a moment.
I hope you get some more helpful posts than mine, except to say, this stinking disease is systemic, I know at times I cannot make my mind do what I want it to do. Kind of sad.
" Dear Lord, be with Trudi and her precious kids, give her some answers so that she can take care of them", Amen


I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Oh Trudi, how frightening and maddening it is. I'm glad your little one wasn't injured during the seizure. eek2 hugss

A friend of mine's 6 year old was just diagnosed with a type of epilepsy. He was zoning out on them and only after they'd called his name a few times would he 'come back'. He's on an epilepsy med now and things seem to have calmed down.

I don't think it can ever be said enough that the medical community must begin paying attention to patients, or as in your case, the mothers of patients. It is beyond me that they ignore us and/or discount us so frequently.

I'm glad she has you on her side, Trudi. Got gettem, Tiger!

Warm hugs,


Kat

A life lived in fear is a life half lived.
"Strictly Ballroom"

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Hi Trudi,

My cousin's husband has been on epileptic medication for 40 years without any problems or side effects. I know our knee jerk reaction is not to medicate, but maybe meds can help.

I hope you get the answers you need.


Laurie

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Hi Trudi,
Im really sorry to hear about this. I know its difficult with our children and how best to treat but sometimes medication is the way . My brother sufferd with epilpsy and had many grand mals untill one finally killed him . Im sure you will make the right choice on how you decide to treat this.
Kevin

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Youngest son had grand mal seizures from birth (8 hrs old). He was medicated from day 2. Went through scans/eegs, etc. It didn't totally control things all the time, but without the drugs, he would have died from seizure complications. Peds neuro is best. Regular neuro would be second best. One or the other is essential.

I understand totally the fear of using these strong drugs. After one grand mal seizure, till a workup is complete and you've seen a peds neuro, waiting to start a drug shouldn't make a lot of difference. Probably you should make sure she isn't in a situation where a seizure could be dangerous to her (tree climbing, driving, ladders, bathtubs, pools). And make sure those around her know what to do in case of a grand mal seizure.

Hope you can get the testing she needs. Quite frustrating to have docs blow off what you feel are real concerns. If there are any more seizures, and they are infrequent, not medicating may be an option. When she gets to driving age, though, it may be a safety issue, for her and others.

Hugs to you. I know it's tough.


DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
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Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
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Trudy, I don't have any experiance with seizures, but I just wanted to let you know that you daughter and you are both in my prayers. I hope they give you the awnsers that you need to make the best choice of care for our daughter. I think your doing the right think. YOu want to be informed. Hugs! Kim

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trudi Offline OP
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Thanks, Lon! After doing a lot of online reading, I found out there are all sorts of forms of partial seizures & such.. it is confusing!


Some seizures are absence ones... where people are called 'daydreamers' because they'll stare off into space for a few seconds, or wring their hands with a blank look on their face as they wander (my eldest did this a couple times and we were both freaked out)...




Some of them are those 'I stopped to think and forgot to start again' type issues, as well as if you have a seizure in your emotional part of your brain, you'll have super irrational emotions... I seem to have those.. I'll be frustrated and suddenly I am throwing things! The other day it happened and I'm throwing a toy down the hall, it hit the wall close to my eldest (who ducked) and I profusely apologized as my hand was throwing something else! LOL! It is funny while I remember it, but the emotions that went with it were INTENSE.. kinda crazy...

I often get the dejavu stuff too (frequency of that can be seizures) and lately I've been getting the opposite... I suddenly have no memory of anything for about 10 seconds to a minute and I get fearful because I'm usually driving somewhere and can't figure out where I am going.

gosh.. it is such a strange thing to consider!

and, I do know that there is always a 'battle' right before a birth... so I KNOW God is doing something here! Actually, He's shown me several good things that have come about because of this. His ways are odd to us.


~ Trudi: homeschooling mom to 6: 16,14,11,9,7, 6 mos


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trudi Offline OP
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sounds like absense seizures... I've read the kids often 'grow out' of these when they hit puberty. or at least they lessen. But each person is different there's no way to know. oh the joys!


~ Trudi: homeschooling mom to 6: 16,14,11,9,7, 6 mos


Joined: Nov 2007
Posts: 1,763
trudi Offline OP
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thanks, Laurie.. I'm hoping her activity will be so small that medication isn't needed. But, I don't agree with chemo drugs either and she has been on them for 2 years...


~ Trudi: homeschooling mom to 6: 16,14,11,9,7, 6 mos


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