creekland Posted April 20, 2012 Share Posted April 20, 2012 (edited) Update in post #58. Youngest is having severe medical issues. I posted it on cc here http://talk.collegeconfidential.com/parent-cafe/1327115-any-neurologists-neuro-psychologists-board.html and apologize for not making a separate thread here, but did want to let anyone in on it in case they want to pray. I just don't have oodles of time to retype a lot and don't want to get emotional this morning as we get closer to a Dr appt. I need to stay strong, so am going to go look for the college threads or anything else I can find to redirect MY mind for the next hour (or so). I will update at some point. Edited April 24, 2012 by creekland Quote Link to comment Share on other sites More sharing options...
ebunny Posted April 20, 2012 Share Posted April 20, 2012 Hope you find some answers! Hugs and positive vibes your way.:grouphug: Quote Link to comment Share on other sites More sharing options...
Mommyfaithe Posted April 20, 2012 Share Posted April 20, 2012 :grouphug: and many prayers. Quote Link to comment Share on other sites More sharing options...
Lizzie in Ma Posted April 20, 2012 Share Posted April 20, 2012 :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Kathy in Richmond Posted April 20, 2012 Share Posted April 20, 2012 :grouphug::grouphug: Praying that you find an answer soon! Quote Link to comment Share on other sites More sharing options...
regentrude Posted April 20, 2012 Share Posted April 20, 2012 :grouphug:You and your family are in my thoughts. I hope you find answers. Quote Link to comment Share on other sites More sharing options...
Teachin'Mine Posted April 20, 2012 Share Posted April 20, 2012 :grouphug::grouphug::grouphug: How incredibly scary it must be. I hope you can get in as an emergency situation to a specialist to at least have some testing done. I like the suggestion to get to Johns Hopkins or Hershey. I think that going to Hershey so you're close if this happens is a great idea. I wouldn't worry about being able to get him in the car as you can call an ambulance to bring him to the ER. I'd have all the numbers in your phone and ready for you to call. Then you can call, and start recording the video so you have that to show the doctors. There are lots of hotels in Hershey - I'd probably just plan to spend a night or two in the general vicinity of the hospital, essentially waiting for the next episode. I'm guessing Hershey is closer, but if it's not much further, I'd be inclined to go with JH, but I don't know anything about the neurology dept. at either - I'm just basing it on the great reputation of JH. I think the answers to your questions about how he fell when running will add a lot to figuring out what's going on - whether the seizures or the fall started this. I'm hoping and praying you get good answers and solutions. :grouphug: Quote Link to comment Share on other sites More sharing options...
mazakaal Posted April 20, 2012 Share Posted April 20, 2012 :grouphug: Praying for you and your son. Quote Link to comment Share on other sites More sharing options...
Hoggirl Posted April 20, 2012 Share Posted April 20, 2012 :grouphug: and prayers for a diagnosis. How very scary for you. :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
tomandlorih Posted April 20, 2012 Share Posted April 20, 2012 :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Janice in NJ Posted April 20, 2012 Share Posted April 20, 2012 I'll be praying for your son and your family. With hope, Janice Quote Link to comment Share on other sites More sharing options...
kareng Posted April 20, 2012 Share Posted April 20, 2012 I'm praying for you, for peace for you and your family, and for answers and solutions.:grouphug: coming your way. Quote Link to comment Share on other sites More sharing options...
memphispeg Posted April 20, 2012 Share Posted April 20, 2012 I hope you find out what is happening. Hopefully the neuro. testing will reveal something concrete. It must be very scary for both of you. :grouphug::grouphug::grouphug: Please let us know what they find. You've got lots of folks pulling for you. Quote Link to comment Share on other sites More sharing options...
J-rap Posted April 20, 2012 Share Posted April 20, 2012 Wow, how scary. I would definitely try and get him to a good clinic/hospital as an emergency situation too. Can't your regular doctor help with that? At our clinic, if they feel the situation is quite urgent, they will help arrange everything, even at a different hospital in a different city. Otherwise, I think I'd encourage you to do everything you can to get him to a good doctor ASAP. Is the University of Pittsburgh Medical Center near you? They have a great reputation medically, and I believe they have a very good neurology department. On a side note, does your son have a metallic taste in his mouth before the convulsions come on? My sister has epilepsy, and apparently that is a fairly common symptom for people with seizure disorders. Quote Link to comment Share on other sites More sharing options...
Twigs Posted April 20, 2012 Share Posted April 20, 2012 :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
dkholland Posted April 20, 2012 Share Posted April 20, 2012 :grouphug: so sorry Patti! Will be praying for you and ds! Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted April 20, 2012 Share Posted April 20, 2012 (edited) The fact that your son is able to remain lucid, answer questions, and not be sleepy or disoriented afterwards makes me think of my husband's experience last year with vasovagal syncope. Typically vs is just fainting due to low blood pressure. Usually that's a sudden drop in blood pressure due to some stimulus. For my husband, though, it was an episode wherein he fainted and then shook with what looked to me like a full-body seizure. It happened twice, and he was completely lucid afterwards, though he could not remember shaking. He went to the ER in an ambulance and they ran every test possible, all of which came back clear. For dh the shaking lasted only about a minute, and was not as violent as what you describe with your son. Your son's experience seems longer and more physically violent than what happened to my dh, so I am not sure that they are the same event. However, I wanted to toss our experience your way just in case it helps. Edited April 20, 2012 by strider Quote Link to comment Share on other sites More sharing options...
Musicmom Posted April 20, 2012 Share Posted April 20, 2012 :grouphug: :grouphug: How scary!! I'm so sorry this is happening. I'm praying for you and your son, and hoping the Drs can give you some answers soon! Quote Link to comment Share on other sites More sharing options...
SonshineLearner Posted April 20, 2012 Share Posted April 20, 2012 :grouphug: Just wanted to send a hug to you, it's hard when things like this happen :( It's even harder when you don't know what it is!! :(:grouphug: Quote Link to comment Share on other sites More sharing options...
Tammyla Posted April 20, 2012 Share Posted April 20, 2012 Prayers here too.:grouphug: Quote Link to comment Share on other sites More sharing options...
justamouse Posted April 20, 2012 Share Posted April 20, 2012 Praying, and praying you find answers. :grouphug: Quote Link to comment Share on other sites More sharing options...
Merry Posted April 20, 2012 Share Posted April 20, 2012 .... Quote Link to comment Share on other sites More sharing options...
bugs Posted April 20, 2012 Share Posted April 20, 2012 :grouphug: More prayers. Quote Link to comment Share on other sites More sharing options...
Kareni Posted April 20, 2012 Share Posted April 20, 2012 Sending positive thoughts for your son's good health and for answers for you all. Regards, Kareni Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted April 20, 2012 Share Posted April 20, 2012 :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Miss Marple Posted April 20, 2012 Share Posted April 20, 2012 Praying you'll find answers. You might check into "movement disorders". A friend had a daughter suddenly develop this (but I don't think it was to the extent of your son) and she searched all over for answers without success until she went to Mayo. They were able to diagnose and start therapy. She is graduating from college this May - it has been a rough road, but she has had accommodations and has been very successful. http://www.mayoclinic.org/movement-disorders/ :grouphug: Quote Link to comment Share on other sites More sharing options...
Susan C. Posted April 20, 2012 Share Posted April 20, 2012 I like the neurosurgeon at Johns Hopkins idea. Go to the best person, even if out of insurance. Quote Link to comment Share on other sites More sharing options...
Laura in CA Posted April 20, 2012 Share Posted April 20, 2012 I like the neurosurgeon at Johns Hopkins idea. Go to the best person, even if out of insurance. :iagree: We've always had the best results going straight to the top. How scary. PRAYING!!! Quote Link to comment Share on other sites More sharing options...
Barbara H Posted April 20, 2012 Share Posted April 20, 2012 Very scary. I'm hoping he can get with a good neurologist quickly and that you can get some answers. Quote Link to comment Share on other sites More sharing options...
creekland Posted April 20, 2012 Author Share Posted April 20, 2012 We're back and the neurologist appt is Monday in York, PA with a pediatric neurologist. Then the EEG is Wednesday. I'm actually ok with those dates, esp since Wed is close to the tipping point if these things are periodic. And, of course, Monday is nice and close. There is more of an update on the other thread - I just don't have a ton of time to write everything twice. My emotions are a LOT better right now though... we have a plan and it's in action. Thanks to those who offered suggestions of what to look for. I will get to those this evening or tomorrow morning as I want to see if I can find anything that might be close to what I saw. His twitching level is low today (only saw two). That helps too. Quote Link to comment Share on other sites More sharing options...
cbollin Posted April 20, 2012 Share Posted April 20, 2012 hugs and prayers -crystal Quote Link to comment Share on other sites More sharing options...
Mom22ns Posted April 20, 2012 Share Posted April 20, 2012 :grouphug: Quote Link to comment Share on other sites More sharing options...
Pam L in Mid Tenn Posted April 20, 2012 Share Posted April 20, 2012 :grouphug::grouphug::grouphug: Prayers. Quote Link to comment Share on other sites More sharing options...
Gratia271 Posted April 20, 2012 Share Posted April 20, 2012 :grouphug: I will be praying for all of you. Quote Link to comment Share on other sites More sharing options...
pjssully Posted April 20, 2012 Share Posted April 20, 2012 i have been following on both boards and will keep you in my thoughts in prayers for an uneventful weekend and good monday/wed, appointments/:grouphug: pj Quote Link to comment Share on other sites More sharing options...
Lang Syne Boardie Posted April 20, 2012 Share Posted April 20, 2012 :grouphug: I will be praying for all of you. Me, too. :grouphug: Quote Link to comment Share on other sites More sharing options...
kwickimom Posted April 20, 2012 Share Posted April 20, 2012 :grouphug: Quote Link to comment Share on other sites More sharing options...
Lori D. Posted April 20, 2012 Share Posted April 20, 2012 (edited) prayers and hugs, for a quick accurate diagnoses, treatment, and healing, Creekland! No advice, just a thought: as a paramedic, my DH once responded on a call to an immigrant who had seizures, due to a very tiny parasite that had lodged in the brain. This is quite rare in the U.S., but would your son possibly have been exposed to a hot springs or warm fresh water lake parasite in the past year? Or a pork tapeworm parasite from not-fully-cooked pork/handling raw pork? And finally, an infection can cause swelling, which would reduce blood flow, and it is possible that if the infection site/swelling is in the brain, it could cause that feeling of lightness and then seizure-like symptoms... Edited April 20, 2012 by Lori D. Quote Link to comment Share on other sites More sharing options...
Barbara H Posted April 20, 2012 Share Posted April 20, 2012 Glad you are feeling a bit better and have appointments lined up. My only advice is very common sense of trying to keep the environment as low stress as possible this weekend, avoid over hunger, dehydration, a lot of exercise, overtiredness. If it is seizures those can be triggers for some. Quote Link to comment Share on other sites More sharing options...
quark Posted April 20, 2012 Share Posted April 20, 2012 prayers and hugs, for a quick accurate diagnoses, treatment, and healing, Creekland! No advice, just a thought: as a paramedic, my DH once responded on a call to an immigrant who had seizures, due to a very tiny parasite that had lodged in the brain. This is quite rare in the U.S., but would your son possibly have been exposed to a hot springs or warm fresh water lake parasite in the past year? Or a pork tapeworm parasite from not-fully-cooked pork/handling raw pork? And finally, an infection can cause swelling, which would reduce blood flow, and it is possible that if the infection site/swelling is in the brain, it could cause that feeling of lightness and then seizure-like symptoms... :grouphug: Creekland. I had the same thought, Lori D. Or if it could have been vaccine-induced (if he's had a vaccination recently). Hoping for the best. Quote Link to comment Share on other sites More sharing options...
MamaT Posted April 20, 2012 Share Posted April 20, 2012 :grouphug: I hope you get the answers you need. That sounds terrifying. I will be praying for you both. Quote Link to comment Share on other sites More sharing options...
Teachin'Mine Posted April 20, 2012 Share Posted April 20, 2012 I'm so glad that you've got such a good plan in place - well done!!! Continuing to pray for both of you. :grouphug: Quote Link to comment Share on other sites More sharing options...
Halftime Hope Posted April 21, 2012 Share Posted April 21, 2012 sending hugs and prayers for your family! I have no experience, but just wanted you to know that we (I) care. Quote Link to comment Share on other sites More sharing options...
creekland Posted April 21, 2012 Author Share Posted April 21, 2012 prayers and hugs, for a quick accurate diagnoses, treatment, and healing, Creekland! No advice, just a thought: as a paramedic, my DH once responded on a call to an immigrant who had seizures, due to a very tiny parasite that had lodged in the brain. This is quite rare in the U.S., but would your son possibly have been exposed to a hot springs or warm fresh water lake parasite in the past year? Or a pork tapeworm parasite from not-fully-cooked pork/handling raw pork? And finally, an infection can cause swelling, which would reduce blood flow, and it is possible that if the infection site/swelling is in the brain, it could cause that feeling of lightness and then seizure-like symptoms... This might be something. He was in Jamaica last summer... I'll have to remember to mention it as a possibility. He hasn't had any recent vacs (had some before Jamaica). They did a CAT scan while at the ER, but I was just thinking tonight... IF (total brainstorming without medical training) this is periodic and the episode "empties" whatever is building up in the brain, of course it wouldn't easily show on a CAT scan right after an episode. Should we have a 4th episode and these start getting predictable, I'm going to suggest trying one (or an MRI - whichever is more detailed) shortly BEFORE and episode is due to see if there's any difference. Three weeks in a row doesn't make a pattern, but it sure seems highly coincidental. (Wed night 11pm Paris time, Wed night 8:15 pm EST, Thurs afternoon 1:40pm EST - or - if he indeed suppressed one Wed afternoon, then perhaps Wed 12noon EST). My brain is just trying to piece it all together like it were one of our science "projects" I guess. I could be totally off. I'm going to be rather on edge starting Wed (maybe Tues) of next week - and trying not to show it or to hover too much. BTW, Thanks all. It does feel good knowing others care. Quote Link to comment Share on other sites More sharing options...
Nan in Mass Posted April 21, 2012 Share Posted April 21, 2012 Hugs and prayers and best wishes for everyone involved. Quote Link to comment Share on other sites More sharing options...
Yolanda in Mass Posted April 21, 2012 Share Posted April 21, 2012 That the doctors be able to identify the cause, that it be easily treated, that your ds have a full recovery, and that you feel the peace of God with you throughout this entire ordeal. Grace and peace be with you, Yolanda Quote Link to comment Share on other sites More sharing options...
txhomemom Posted April 21, 2012 Share Posted April 21, 2012 Sounds like it could be either some kind of seizure or possibly a result of the fall. It is hard to tell since you did not see the first episode occur. I also agree to look into causes from parasites, etc. There are a lot of infectious diseases that can affect the brain in such a manner. I would be especially be concerned because he has traveled to other countries. Here is information on PANDAS which is a type of strep infection that can cause tics: http://en.wikipedia.org/wiki/PANDAS Also, I once saw an episode on a medical show where a girl was having uncontrollable twitches (I think hers were constant though) and I think it had something to do with her heart. Hope you get some answers soon. Quote Link to comment Share on other sites More sharing options...
Penny from Tenny Posted April 21, 2012 Share Posted April 21, 2012 Just saw your post this morning, but will be praying for you that answers can be found to the situation. I have a son with seizures and other medical problems so I can relate to the frustration of not knowing the "why" to what you are seeing. I'm glad he will be seeing a neurologist though and hope they can figure this out soon. The twitches sound alot like myoclonic seizures to me, but there are so many other factors to his situation. Praying. Quote Link to comment Share on other sites More sharing options...
snowbeltmom Posted April 21, 2012 Share Posted April 21, 2012 :grouphug: I just saw your post this morning as well. My brother and sister-in-law went through something similar with my niece a few years ago. They had a number of anxiety-filled weeks as the doctors tried to figure out what was going on. My niece is now on anti-seizure medication and has been seizure-free for a few years now. Hoping you find answers soon. Sometimes waiting for the doctors to figure out exactly what is going on is the hardest part. :grouphug: Quote Link to comment Share on other sites More sharing options...
Leonor Posted April 21, 2012 Share Posted April 21, 2012 Praying for you. Praying for wisdom for doctors, healing, and peace.:grouphug: Quote Link to comment Share on other sites More sharing options...
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