TravelingChris Posted February 17, 2013 Share Posted February 17, 2013 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. Quote Link to comment Share on other sites More sharing options...
bettyandbob Posted February 17, 2013 Share Posted February 17, 2013 :grouphug: praying here. Quote Link to comment Share on other sites More sharing options...
Desert Rat Posted February 17, 2013 Share Posted February 17, 2013 Oh, Honey. When it rains, it pours. I'm so sorry you're going through so much medical stuff. And it's so hard to focus on the few positives in your life, but so important to try.I'm glad you're trying. :grouphug: Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 17, 2013 Share Posted February 17, 2013 I'm sorry, Chris. It has been a hard, hard year. I hope you can get some good medical help really soon. Quote Link to comment Share on other sites More sharing options...
ScoutTN Posted February 17, 2013 Share Posted February 17, 2013 Praying for you and your kids! :grouphug: Quote Link to comment Share on other sites More sharing options...
Lady Florida. Posted February 17, 2013 Share Posted February 17, 2013 I'm so sorry Christina. I've been wondering how things were going since your last post. :grouphug: Quote Link to comment Share on other sites More sharing options...
Ellie Posted February 17, 2013 Share Posted February 17, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
I talk to the trees Posted February 17, 2013 Share Posted February 17, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted February 17, 2013 Share Posted February 17, 2013 :grouphug: Glad your son is doing well. I feel so sorry for your dd, and pray she gets a diagnosis and help soon. It's been a long road for her, poor thing. Sorry too for all the rest--it doesn't sound easy. :grouphug: Quote Link to comment Share on other sites More sharing options...
Kathy in Richmond Posted February 17, 2013 Share Posted February 17, 2013 :grouphug: Praying for you & your family, Christina. Quote Link to comment Share on other sites More sharing options...
nevergiveup Posted February 17, 2013 Share Posted February 17, 2013 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. Quote Link to comment Share on other sites More sharing options...
KnitWit Posted February 17, 2013 Share Posted February 17, 2013 I always follow your updates and keep you in my prayers. ((((Hugs)))) Quote Link to comment Share on other sites More sharing options...
Catwoman Posted February 17, 2013 Share Posted February 17, 2013 Praying for you and your family, Chris. I'm so sorry that so many things keep going wrong. :( Quote Link to comment Share on other sites More sharing options...
catz Posted February 17, 2013 Share Posted February 17, 2013 :grouphug: Quote Link to comment Share on other sites More sharing options...
Laurie4b Posted February 17, 2013 Share Posted February 17, 2013 So very sorry! :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Tammyla Posted February 17, 2013 Share Posted February 17, 2013 I can only imagine how you are holding it together for everyone while fighting your own battles. Hugs and prayers. Quote Link to comment Share on other sites More sharing options...
celticmom Posted February 17, 2013 Share Posted February 17, 2013 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: Quote Link to comment Share on other sites More sharing options...
twinmami01 Posted February 17, 2013 Share Posted February 17, 2013 Still praying for your daughter and your family. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted February 17, 2013 Share Posted February 17, 2013 I'm so sorry, Chris. :grouphug: I hope you get some real answers soon to help with each of the different issues. Quote Link to comment Share on other sites More sharing options...
swellmomma Posted February 17, 2013 Share Posted February 17, 2013 :grouphug: Quote Link to comment Share on other sites More sharing options...
J-rap Posted February 18, 2013 Share Posted February 18, 2013 I'm so sorry about all of the challenges you face, and how strong you have to be to keep the family going. Have you ever heard of the ketogenic diet? I've read a lot about it because of the brain research I do these days, and for some people, it has reduced seizures. http://www.epilepsy.com/epilepsy/treatment_ketogenic_diet Quote Link to comment Share on other sites More sharing options...
MedicMom Posted February 18, 2013 Share Posted February 18, 2013 I will lose consciousness and to a non medical person it will appear that I am having a seizure when in fact it is anaphylaxis. Allergies can present in unusual ways. Praying for you. Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted February 18, 2013 Author Share Posted February 18, 2013 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. Quote Link to comment Share on other sites More sharing options...
k2bdeutmeyer Posted February 18, 2013 Share Posted February 18, 2013 Ugh....what a long road that just never seems to end. I'm so sorry!! :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
GailV Posted February 18, 2013 Share Posted February 18, 2013 :grouphug: Quote Link to comment Share on other sites More sharing options...
Granny_Weatherwax Posted February 18, 2013 Share Posted February 18, 2013 :grouphug: I am sorry things aren't going well. Quote Link to comment Share on other sites More sharing options...
unsinkable Posted February 18, 2013 Share Posted February 18, 2013 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. Quote Link to comment Share on other sites More sharing options...
Lara in Colo Posted February 18, 2013 Share Posted February 18, 2013 There is nothing I can say or do that will help, but know that you are not alone. We will always be here to support you. Quote Link to comment Share on other sites More sharing options...
oneddmanybooks Posted February 18, 2013 Share Posted February 18, 2013 Oh my, Christina. I'm praying for you and your family. Quote Link to comment Share on other sites More sharing options...
sbgrace Posted February 18, 2013 Share Posted February 18, 2013 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. Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted February 18, 2013 Share Posted February 18, 2013 Praying that you get some answers. Quote Link to comment Share on other sites More sharing options...
Juniper Posted February 18, 2013 Share Posted February 18, 2013 ((((((hugs)))) sent your way! Quote Link to comment Share on other sites More sharing options...
Twigs Posted February 18, 2013 Share Posted February 18, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
QueenCat Posted February 18, 2013 Share Posted February 18, 2013 :grouphug: Chris :grouphug: Quote Link to comment Share on other sites More sharing options...
QuirkyKapers Posted February 18, 2013 Share Posted February 18, 2013 :grouphug: Wow. That is a lot of things going on. Quote Link to comment Share on other sites More sharing options...
Halftime Hope Posted February 18, 2013 Share Posted February 18, 2013 continuing to pray for you Chris. Thank you for the udate and the reminder to pray for you. We consider it an honor. And I'm truly sorry that you are in this boat! Quote Link to comment Share on other sites More sharing options...
Heatherwith4 Posted February 18, 2013 Share Posted February 18, 2013 I'm praying for your family, Christina. :grouphug: Quote Link to comment Share on other sites More sharing options...
mom2samlibby Posted February 18, 2013 Share Posted February 18, 2013 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. Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted February 18, 2013 Share Posted February 18, 2013 :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. Quote Link to comment Share on other sites More sharing options...
mumto2 Posted February 18, 2013 Share Posted February 18, 2013 :grouphug: Quote Link to comment Share on other sites More sharing options...
Pod's mum Posted February 18, 2013 Share Posted February 18, 2013 Just :grouphug: . Sometimes it's all I can give. Quote Link to comment Share on other sites More sharing options...
Lizzie in Ma Posted February 18, 2013 Share Posted February 18, 2013 :grouphug: Chris :grouphug: I am so sorry, hope you get some answers and some help. Quote Link to comment Share on other sites More sharing options...
ashfern Posted February 18, 2013 Share Posted February 18, 2013 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Kalypso Posted February 18, 2013 Share Posted February 18, 2013 :grouphug: :grouphug: I'm sorry your family is having such a hard time medicallly. I pray that you get some anwers soon. Quote Link to comment Share on other sites More sharing options...
readinmom Posted February 18, 2013 Share Posted February 18, 2013 :grouphug: Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted February 18, 2013 Author Share Posted February 18, 2013 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. Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted February 18, 2013 Author Share Posted February 18, 2013 :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. Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted February 18, 2013 Share Posted February 18, 2013 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. Quote Link to comment Share on other sites More sharing options...
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