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In case anyone wants to offer advice...or pray

creekland
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creekland

creekland

Posted
Posted (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 by creekland
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Teachin'Mine

Teachin'Mine

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: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:

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J-rap

J-rap

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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.

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Harriet Vane

Harriet Vane

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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 by strider
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Miss Marple

Miss Marple

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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:

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creekland

creekland

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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.

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Lori D.

Lori D.

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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 by Lori D.
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Barbara H

Barbara H

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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.

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quark

quark

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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.

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creekland

creekland

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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.

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txhomemom

txhomemom

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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.

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Penny from Tenny

Penny from Tenny

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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.

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snowbeltmom

snowbeltmom

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: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:

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