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A week ago this week, my life changed to so much worse=prayers still needed


TravelingChris
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As my middle daughter reminded me today, it has been a year since she went from a happy, energetic over 4.0 freshman doing research, getting all A;s in her second semester of classes, to where she is now- about to try for her second medical withdrawal. She came to visit this weekend with her fiance- new since last year, about the only positive thing that has happened in our lives in this year. Since that time, she has progressively been getting worse and worse. This Saturday was the first time I saw her having a grand mal seizure and she had many, interspersed with less active seizures. Since she had a very long spell of seizures,and she she hit her head again with another big lump, she went to the ER again where they wouldn't help her except to give her an IV. Regardless that three psychiatrists have all said it is not psychological, even if this was, we want her treated. They didn't say it was psychological, just that they don;'t know what it is. Other than have her take iron when she was initially anemic, no one has ever tried any medication with her to stop this. As it is, we are waiting until the end of March to go to the Epilepsy clinic for an appointment with the head doctor.

 

Then to make things worse, youngest got a serious food allergy, and has spent the last year trying to recover from depression while trying medication after medication. I think we may have one that helps, finally. However, last week, she blew out her knee and although the orthopedist couldn't diagnose it due to amount of swelling then, we know it is bad because her upper leg can stay still while she rotates the lower. So that is probably a surgery. In the meantime, she is in a full leg brace and cannot bend that leg which makes lots of things difficult.

 

To top if off, I still have an as yet undiagnosed thyroid problem along with needing a new rheumatologist since my RA is totally out of control and causing lots of pain. Oh, and also in the last year, I got confirmation that yes, I am hard of hearing and I can't do anything about it even though it is the type that usually can be cured- conductive. In my case, because of Sjogren's, my eustachian tubes are blocked and cannot be unblocked by ear tubes or anything else.

 

I did think of another good thing that happened to us this last year- my son finally got a job and also got an apartment. He is doing so well in his job, they are giving him more hours and will soon train for an advanced position.

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Since you have said that your youngest had a severe allergic reaction to something, could your daughter be allergic to something which could be causing her seizures? Allergies affect people dfferently: I have read of children losing conscienceness when they eat something they are allergic to (I believe it was Doris Rapp's book), so I would want to rule that out.

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Since you have said that your youngest had a severe allergic reaction to something, could your daughter be allergic to something which could be causing her seizures? Allergies affect people dfferently: I have read of children losing conscienceness when they eat something they are allergic to (I believe it was Doris Rapp's book), so I would want to rule that out.

 

:iagree: :iagree: :iagree: I have had some unusual allergic reactions and have read about even more.

 

:grouphug:

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Thank you everyone. Although all of my kids have allergies to pollen, only my youngest is very allergic. I can't think of what it would be since her location, her diet and pretty much everything else has changed a few times over the year. They did take her off each medication that she is on at least once and never did she get better, just sometimes worse.

 

I will tell her that she may want to try the ketogenic diet.

 

She has several things that already could cause seizures including migraines (and an unusual kind too- seven month long one), Factor V Leiden which can cause blood clots, including in the brain, and her then roommate had come back from winter break having been someplace foreign and got a lingering sickness. Then I know I was told I have some type of mitochondrial abnormality and some of those can cause seizures, though I don't have any. Unfortunately the hospital where I had the muscle biopsy closed over ten years ago and the records only need to be kept for ten years. I think I had the test about 25 or 26 years ago.

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The ketogenic diet is a medically monitored and controlled diet that has been used with children whose epilepsy cannot be controlled by other means. It is most successful with children.

 

It is not a " diet" in the sense that a person can simply stop eating certain foods and the seizures will stop.

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You were told you have a mitochondrial disorder?

Has your daughter been tested for mito? Lots of people have adult onset and stump their unaware doctors.

 

I'm sorry so much horrible has happened to your family. It seems like some get way more than their share. :grouphug: Praying for answers, treatment, comfort, peace.

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What an awful year you've had. I hope things improve for you soon.

 

Thought I would suggest another route to look into. Could it be parasites causing her seizures? Normally, I wouldn't suggest this, but since I had vertigo cause by a parasite 2 years ago, it is something I mention when one can't find an answer to health issue. http://sciencenordic.com/tapeworm-parasites-brain-give-epilepsy

 

http://www.livestrong.com/article/179227-human-symptoms-of-foreign-brain-parasites/

 

http://www.parasite-cleanse.com/brain-parasites.html

 

Good luck in finding answers.

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:grouphug: I hope you get some answers from the epilepsy clinic. ds's girlfriend has a very odd form. it is still uncontrolled as she does not respond to any of the medications.

 

 

eta: did your daughter's seizures start after a head injury? ds's girlfriend's did. she was fine beforehand.

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mom2samlibby said:

Thought I would suggest another route to look into. Could it be parasites causing her seizures? Normally, I wouldn't suggest this, but since I had vertigo cause by a parasite 2 years ago, it is something I mention when one can't find an answer to health issue.

 

Thanks for the suggestion. Parasites could be a possibility since she used to run outside in the yards without shoes and we have all kinds of wild animals living here and in the last place we were living including snakes, salamanders, woodchucks, rabbits, deer, fox, opossums, raccoon, armadillos, coyotes,chipmunks, and squirrels.

 

Mainly I want someone to just start listening and testing everything that could possibly cause these and not rule out things without testing.

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:grouphug: I hope you get some answers from the epilepsy clinic. ds's girlfriend has a very odd form. it is still uncontrolled as she does not respond to any of the medications.

 

 

eta: did your daughter's seizures start after a head injury? ds's girlfriend's did. she was fine beforehand.

 

It certainly could have started from a head injury. She started fainting and near fainting when she was nearly 17 and it wasn't until about a year later that what we found out it was- neurally mediated hypotension- and it became controlled and she stopped fainting. During any of those faints, I am sure she could have injured her head. She started this whole different type of collapsing, which we now know are seizures, when she was 18 1/2. She is now 19 1/2.

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It certainly could have started from a head injury. She started fainting and near fainting when she was nearly 17 and it wasn't until about a year later that what we found out it was- neurally mediated hypotension- and it became controlled and she stopped fainting. During any of those faints, I am sure she could have injured her head. She started this whole different type of collapsing, which we now know are seizures, when she was 18 1/2. She is now 19 1/2.

If she had stopped fainting before the seizures started, they are probably not related.

 

have you seen a naturopath? they will also look at parasites as suggested earlier, and other non-standard causes.

 

best wishes. eventually, someone in the medical field will listen.

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