collapse and syncope followed by neurological episode

[jules]

November 4, 1999 my 8 year old daughter (who will be 9 in January 99)  collapsed on the playground at school approximately 12:10 noon and was then in some sort of undetermined state.  Her eyes were crossed and they did not become straight for about 1 hour and 45 minutes.  She could not talk or move any of her limbs.  She was rushed to emergency room.  Upon arrival the er doc began asking about her seizures.  We had never had a seizure, however, I assume his first opinion upon on looking at her physical state was that she was having some type of seizure.  We stayed in the emergency room for about 30 - 40 minutes before they brought us in to do a CAT scan.  They used Iodine I beleive in her IV for imaging purposes.  During the scan her eyes finally started to focus somewhat.  They would uncross for a few moments and then cross again.  When we were back in the ER room her eyes finally started to focus correctly.  The doctor came in and stated her CAT scan was negative, so were blood test and anything else they had done.  They had us stay a night for observation.  Although her eyes focused and she started to talk again she did not regain control of her limbs for another hour or so .  It was very scary and absolutely horrible.  Our pediatrician did not know what to make of it however, her sugar was a little low, so his best guess was to watch her and feed her midmorning snacks.  He said we may not see this again.  6 days after the first we had another, five days after the 2nd we had a 3rd.  After the third visit in the ER our pediatrician sent us to New Orleans Children's hospital for evaluation.  We stayed four days and had EEG, EKG, 24 hour heart monitor, ecocardiogram, blood test and 14 hour fast for sugar testing.  The only thing that was not negative was an abnormal EEG.  They diagnosed us with partial complex epilespy (non-intractable) and ADHD.(Which we already had been diagnosed with) and put us on Tegretol (building the medication up in her system over a 4 week period) We went home and started the medication as prescribed still checking sugar daily at school and home.  10 days went by and we were at a suprise party for a friend.  She was outside playing with other children.  She came in looking pale.  She stood next to me hugging my waiste and then simply collapsed.  We brought her to a bed room, took her blood sugar (76) and sat with her for about 20 minutes.  This episode did not seem nearly as severe as the first three and we chalked it up to having been on the medication for 10 days maybe helping them become less sever.  At that point we were not too concerned.  Two days later playing at recess again she collapsed, and the following day again upon playing.  We contacted our doctors again and went back to the hospital.  We induced three more episodes that next day in the hospital simply by having her do jumping jacks and run in place next to the hospital bed with eeg conected and ekg connected.  Also they were monitoring her with video cameras.  (Keep in mind she was still on seizure medication at this point)  During the episodes we were told nothing changed on the eeg or the ekg.  So we went over to cardiology and within two minutes on stress test collapsed once again.  However, nothing seem to change there either.  The time it took her to come out of these episodes were much less than before we were on seizure medication.  They then ordered MRI/MRA and another stress test off all of the medication.  (She was also taking Adderall 10 milligrams once a day at 7:15 am daily)  This was a Friday and the tests were to be done on the following Monday.  The entire weekend they monitored her heart and she laid in bed and watched TV.  She was not very energetic, she seemed quite lazy actually, which is unusual for her.  Monday evening we did MRI/MRA and another stress test on the tread mill.  She went for about nine minutes before she said she was tired and then walked off.  We were discharged with a noncardio syncope diagnosis.  They said she now did not have epilepsy and we went home.  No more medication just maybe something that happened.  We felt pretty good because she did not collapse on the last stress test and thought it was just one of those unexplainable things???? Two days later she had another while she was running around playing tag at recess.  A nurse in the school office noted her pupils were pinpoint, but had no response to pain.  They pinched her and she could not talk or respond.  However, she knew everything that had happened.  We called the doctors again and went back to the hospital to do the tilt tabletest.  Hoping this would reveal SOMETHING ????? Within 20 minutes of the test (with NO medication administered)she passed out.  She opened her eyes but could not talk, move or control any part of her body.  The doctor and other person giving the test timed her episode at 25 minutes.  They tried to pinch her and provoke her to respond to pain with no response.  Finally after 25 minutes she began talking again and could tell them they were hurting her but she just could not make her mouth work.  Our cardiologist referred us back to our neurologist and we are waiting to hear from her.  We are concerned because we have read information indicating sometimes many of these test are negative many times before something manifests itself.  We have read about some other test we have not yet done called PET or SPECT.  Should we request these test.  Do you think they would help us reveal a cause for these episodes ?  Please help if you have any idea of what could be going on with her or any suggestions as to what may help us figure out how to find out.  ALSO NOTE: WHEN SHE IS RUNNING AROUND AND THEN FEELS DIZZY RIGHT BEFORE SHE COLLAPSES SHE COMPLAINS OF A HEADACHE IN EVERY INSTANCE EVEN RIGHT BEFORE SHE WAS OUT ON THE TILT TABLE TEST(One of our neurologist before we had the tilt table test done had suggested physcological causes, however none of our other specialist agree)  Have you ever seen a physciological case where such a complicated long episode occurs ?  

Thanking you in advance.
Jules

[lori]

My husband has had these "syncope" episodes for apx. 4 years now.  One of them finally causing a severe car accident.  Today we are at the Mayo Clinic in Arizona looking for answeres.  If you find any please email me at ***@****

[CCF Neuro[P] MD, RPS]

Dear Alan:

It would depend on how much of each was ingested.  A regular dose of tegratol and a glass of beer would likely cause little effect.

CCF Neuro MD

[alan cowart]

could you please explain to me  the effects of tegratol
mixed with alcohol. very concerned.

[alan cowart]

could you please explain to me  the effects of tegratol
mixed with alcohol. very concerned.

[CCF Neuro[P] MD, RPS]

thanks for your comments.

CCF Neuro MD

[jules]

Dear Vivian,

Hang in there.  Our pediatric cardiologist is saying that at the moment our daughter has orthostatic hypotension.  (basically low blood pressure), however, it is not typical.  It is very severe and unusual.  She does not get dizzy when she is going from sitting to standing position, she has to exert herself and be in an upright position for her to collapse.  Our cardiologist has mentioned the cause of the orthostatic hypotension to be autonomic dysfunction.  This I had read about and know there are a couple of really good research places if we need later to pursue more information or test.  Mayo has a research center in Jacksonville Florida and I beleive Vanderbilt in Tennessee also has a research clinic in regard to autonomic dysfunction.  For the moment the only problem we are having now that we have found it is orthostatic hypotension.  So that is what we are treating.  Did you ever have a tilt table test done ?  If you have not, I would suggest that you request this test.  We had one done where she passed out, but they found no change in her BP or heart rate.  When we found this new doctor, he wanted to do another tilt table test in a different way.  When we did the second tilt table test, he actually watched the monitor and that was how he caught it.  Her blood pressure was bottoming out so fast unless you were staring as it happened it was missed.  When her BP bottomed out, her heart rate sky rocketed.  It happened so fast they performed the test again to make sure it was not a malfunction in the equipment.  She has been on Florinef now for two weeks and she looks remarkable.  She is soooo happy because she can start to run and play again without collpasing.  From what I understand this florinef helps to maintain water and salt to help increase blood volume in the body.  She has to eat lots of water and salt.  This also helps maintain BP.  

I am sorry to hear about your financial difficulties.  However, if your symptoms are identical as you stated earlier to our daughters you may want to get a the tilt test done if you have not yet had one.  I would suggest it done in a similar manner to our second one, knowing the first one (even a more modern table )did not pick up on the problem.  If that could pinpoint your problem, then you could possibly get medication and hopefully move on with life in a most normal direction.  But medical care does cost and even with insurance, all of the doctors and test is a strain financially on us also.  We are so glad we did not let that stop us, because we finally found something and this may not be all there is to it, but for now, quality of life is great.  One day at a time, patience, endurance and hope, just hang in there.  I will pray for you.

May God Bless you and your family.

Jules

[vivian larue]

Jules,
I'm really glad things have gone well for you, and your daughter is starting to feel better. yes, God does work in mysterious
ways. But I really don't get it, so what are they saying it is?
      Yes I have seen a neurologist among so many other doctors,
I have had cat scans, MRI's, EEG's, EKG's, blood work, urination work, just about everything you can possibly do, I've had it done! My doctor says now that if these episodes occur more that my next step would be the mayo clinic! Which is a problem for us
we have no insurance and we are still paying on all the hospital bills we have now.I don't know, I guess I have just learned to except what is happening to me and let God help me through it. When I do go through mine though,I cry and tell my husband that I wish they would just stop, and I ask God to help them stop. It is so hard. Lately though they have been milder. I just now put it in God's hands since the "doctors" can't help anymore.
                        Good luck with everything
                        and may God continue to be with
                        you and yours!
                                    Viv

[jules]

To all who have responded to my post.  

Thank you all for being interested in our problem.  We FINALLY found SOMETHING !!!!! A new cardiologist that we saw last week decided to try doing a tilt table test with "the works"  He along with a P. neurologist and P. endocrinologist all were present during the test.  They hooked up EEG, EKG and lines to draw blood, along with a regular IV.  Once the episode occured the idea was to test all blood, not just sugar.  One physician was watching the monitor and I believe an administrator of the tilt table test may have been monitoring her heart rate manually also, while another physician filmed the entire test and another monitored something else.  Within the first two minutes of tilting her up she collapsed.  They lost her Blood pressure and it happened so quickly they initially thought that there may have been a mechanical malfunction.  The neurologist was 98% convinced that these episodes were psychological so as soon as she was out he applied severe pain and she screamed and cried in her fuzzy state.  They used the term "BOTTOMED OUT"  They were so unsure of whether or not this had really happened they decided to do it again.  Within another two minutes of tilting her up, she again passed out and the neurologist again applied severe pain.  I believe they printed the test and again proved she lost her blood pressure.  They seemed very stunned at the rapidness of the "Bottoming Out" however, proved this was actually organic ! YEAHHH  The neurologist then did a test as she lay down on her back to see if she had a conversion component also.  He did indeed prove this to be true.  We beleive that these episodes were so very scary to her that her mind created a defense mechanism within the last several weeks since we had been through so many test and found nothing.  He simply told her we found out what was wrong with her, and people with this problem usually pass out when they pust this medicine in their body through the IV.  She passed out immediately and with a simple rub behind her neck, she was back. These episodes were not real, however, in her mind they were.  But the real ones were VERY REAL and VERY SCARY.....since 11-4-99 she had at least 16 real ones before the short ones started, we could always tell the difference.  (The doctors thought she was one tough little girl)  The real ones always happened when she was exerting herself.  We beleive if we could have found something sooner the conversion component would not have manifested itself, however, the BP bottoming out was happening so fast it appears the machines were not picking it up during the other test we had done....IF our new cardiologist had not gone with this hunch we could have gone all over the world or toward pyschology and we truly beleive this thing could have really snow balled.  We feel and truly beleive that God led us to this wonderful doctor and with the help of everyone involved we will be able to help our 9 year old wonderful daughter. The cardiologist told us this is orthostatic hypotension of the most severe cases he has ever seen.  Extremely atypical.  She certainly does not fit the typical signs and syptoms of orthostatic hypotension.  She is never dizzy when going from sitting to standing, etc.  With all of the research we have done in the past several months I know this may just be a tip of another something we have yet to find, however at the moment we are treating her symptomatically and giving her florinef along with increased salt, water and at least two dill pickles a day.  We tell her that she will be fine now, we know what is wrong with her, and to please be patient maybe soon she will be able to run and play.  We may still have to see a psychologist but since last Friday she seems to have stopped the small ones, so we want to wait a little to see if the finding of the problem may have helped the little ones in itself.  The three new doctors who helped us are in Monroe Louisiana at St. Francis Medical Center, they are all partners and that made it easy for us to communicate with them and for them to communicate with each other. We also had a wonderful doctor from New Orleans Childrens Hospital who truly beleived something was going on, she just could not figure out what it was and she is who originally referred us to this wonderful cardiologist who found our problem.  We have learned from this experience that sometimes just because you can't see it or hear it doesn't always mean there is nothing there.  Evaluating our problem took listening to us and basically a gut feeling I think.  Those doctors listened with their hearts not just their eyes or their ears.  Sometimes I think that is God's special way of letting us know he is still steering the ship.  He has given us other talents that sometimes we forget are there.

Thank you all so much for your attention once again and for all of your advice.

May God Bless you all.
Jules and family

[CCF Neuro[P] MD, RPS]

Dear Jules:

I am please that you got your answer.

Sincerely,

CCF Neuro MD

[CCF Neuro[P] MD, RPS]

Dear Jules:

Yes, one of the pediatric epileptologist I spoke to was Dr. Wyllie.  Let's hope that your problem can be solved before coming all the way to Cleveland.

Sincerely,

CCF Neuro MD

[jules]

Dear Doctors,

Thank you for your suggestions.  I have just forwarded your last response to our newest pediatric neurologist, Dr. Aristotle Pena-Miches with the St. Fancis Medical Center in Monroe, Louisiana.  He indicated to us in his opinion that you are the best in the world.  A Dr. Eileen Wiley, I beleive, at the Cleveland Clinic  was his next suggestion to us.  We may actually be meeting some of you guys if we can't figure this thing out.  

Thank you for all of your time and attetion in our search for an answer.

May God Bless you all.

Sincerely,
Jules

[CCF Neuro[P] MD, RPS]

Dear Jules:

I had a talk with some of the other pediatric epileptologists at the Clinic about your daughter.  There were three suggestions, the first was a frontal lobe SMA seizure type that induces loss of motor function, the second was narcolepsy (although both commented that this was unlikely but needs to be evaluated in the differential) and the third was syncopial epilepsy (as previously discussed on the original posting).  Both suggested that a monitoring visit with EEG and excercise.  An overnight stay with sleep deprivation.

I hope this helps.

Sincerely,

CCF Neuro MD

[CCF Neuro[P] MD, RPS]

thanks for your words and concern.

CCF Neuro MD

[jules]

Dear Vivian Larue,

I am sorry to hear about your problems.  My daughter will be 9 years old tomorrow.  Her episodes have continued since I have last posted to this forum.  Her episodes are becoming more and more frequent with less and less exertion.  This morning she was with her grandparents and simply walking around in their living room when one occurred.  Yesterday she was at school with the rest of the class in line and walked from the classroom heading to the church for her birthday mass when she collapsed.  The day before she was walking from one class on one part of campus to the other when she collpsed.  I beleive she has collapsed almost every day this week.  Her coloring is very gray and she has black circles under her eyes.  Her attitude which was excellent for the last few months is now beginning to diminsih. (She was so brave through all of the hospitals and doctors and never complained once, but now I think she is scared they do not have an answer)(The episodes used to happen with lengthened exertion like playing tag for 5 - 10 minutes, now a simple walk causes them, but they have ALWAYS happened walking or running)

However, we are trying some new specialist next Tues.  and we are filled with new hope.  Have you seen neurologist and cardiologist ??  Our teams of doctors that we have already seen (some 30 or more including pediatric neurologist, endocrinologist, cardiologist and pediatric specialist) do not feel this is anxiety or physcological(minus one who has since changed her opinion in unison with the rest of the docs).  They simply are honest and tell us they beleive it is very real they just don't know WHAT it is!  They have tried very hard to find something, anything that would lead them in a specific direction, but have found nothing.  Hopefully since the actual episodes have changed somewhat, they now happen much more frequently without much exertion at all, maybe something in her body has changed.  And now maybe we will see something that we did not see before.  She can hardly do anything anymore without collapsing and that is very scary.  We have the entire school and community on "Hailey Watch"  Everyone takes turns watching her from afar, (but close w/o her really knowing), so as not to make her feel uneasy just in case she falls, so she doesn't bust her head open or really hurt herself from the fall.  SO far our plan has worked, however, now they are becomming closer and closer so we really need to hope we can find an answer soon.  Plus, she's really not looking so well these days.  

She really cried hard Wed. after her last 25 minute episode and said she just wanted this to stop happening.  I wanted to cry too, but I told her we were very, very fortunate to just be collapsing for 30 minutes or so, we could be a lot worse off like alot of the other little children that we had seen on the floor we stayed on at the hospital so many times.  She totally agreed and then stopped crying.

I promise if we come across any positive news I will alert you through this forum Vivian Larue.  

You hang in there and don't stop looking until you find an answer or God finds one for you.

God Bless and Good Luck
Jules

[CCF Neuro[P] MD, RPS]

thanks for the comment.

CCF Neuro MD

[vivian larue]

dear jules,
i have the same exact, i make very clear, the same exact systoms
as your daughter and i am 33 years old. I have paid a lot, I mean a lot of money for evey doctor to say "I DON"T KNOW!" we have lived in Florida, Nevada, and now Michigan. The doctor i am seeing now suggested that i might be having both a anciety attack plus a type A migraine headache. they put me on both ativan(sp)and some migraine meds and it has helped i do not have my epileptic type seisers but i still look like i'm in a daze and sometimes my speech is still impaired or i am unable to talk at all. So if you have any luck at all finding out what this is please, please let me know. My e-mail is ***@****
                     thank-you for not making me feel alone
                      on this any more!
                               vivian larue

[jules]

Thank you for your response.  I hope your family had wonderful holidays.  I apologize if I seem too anxious.  I understand that you have "a life" and I sooooo appreciate your time and consideration of our problem.

Regarding my daughter's tegratol levels, I don't exactly know what they were, however, we were told they were sufficient.  Since I have last given you any information she continues to have these episodes.  It seems they are becoming easier to induce.  What little exertion previously did not cause them now seem to happen with the slightest of exertion.  Last week she was walking a little dog on a leash and collapsed in the yard of a neighbor.  She turns very gray and little gray circles appear around her eyes.  That episode lasted for about 20 minutes or so.  We pinch and poke and tickle her until she finally starts to move.   She appears to almost be in a vegatable state.  That was Wednesday 12-29-99 then she had another 12-31-99 (evening) playing with cousins and another 1-3-99, 1-4-99 and these were with very little exertion, however the recovery period was much shorter than it used to be.  (15 - 20 minutes instead of 30 or more)  Her pupils appear to be pinpoint and she is completely dead weight.  Sunday she mentioned hearing something in her head like Hmmmm Hmmmm Hmmmm.  I assume maybe she heard buzzing ??? She has auditory processing disorder and sometimes is very hard to understand what exactly she is trying to explain.  She also says when her episodes occur her fingers feel like they are curling all up and sometimes her toes. ????

Our head pediatric neurologist is going to present her case at conference in New Orleans next Wednesday to see if anyone else may be able to come up with something they have not yet covered.  Our head pediatric cardilogist is on vacation this week but will be contacted by our neurologist to again review our history and test regarding the cardiac area.

On another note I have also been coresponding with your cardiology forum since our doctors do not know for sure what is going on.  A cardiologist on that forum indicated our tilt test was positive due to syncope be induced in a monitored setting.  Even though we had no changes in BP or HR.  He suggested beta blockers.  We are so stumpted.  Our doctors don't really even know in which direction to send us for further information.  Have you ever heard of dyautonomia ???  No one seems to know much about it but someone directed me to a research site on that topic in the cardioloy forum.  If you have any ideas or suggestions for any other test or comments we would greatly appreciate it or try almost anything.  Not knowing is very frustrating for everyone involved and sometimes you just never know, someone may see or know something that may lead to solving the mystery.

Thank you so much for your time and attention.

May God Bless you and your family through the New Year.
Jules  

[CCF Neuro[P] MD, RPS]

Dear Jules:

I was on vacation with my family.  The EEG, since it was positive for epileptic discharges, then I am assuming that there were spikes or sharp waves.  I would see if you can get a copy and give this to your doctors.  Second, hyperventillation is what the technician would have your daughter do during the EEG recording, not that she has ever hyperventillated.  The question was whether your daughter had any EEG changes during hyperventillation while being recording (looking for absence).  The tilt table results sound negative to me as there was no change of blood pressure or heart rate during the tilt.  You did not answer my question of tegratol?  What were her levels?  If her levels were low, this would suggest that it might be due to this that she had break throughs.  The abnormal EEG still has diagnositic value, if it was read correctly.  I would take this to your doctors and make sure the reading is correct.  I would still say that the events might be syncopial induced epilepsy.  

Sorry that you have had so much trouble.  We do this on our own time and sometimes things get busy in our lives and we have to put it on the side burner.  Best of luck with your daughter.

Sincerely,

CCF Neuro MD

[The doctor who asked me questions never]

In the above post a doctor requested specific information regarding our problem, however, I have never heard back from them ??? Please respond.  
Jules

[To the CCF Neuro [P]MD, RPS on Fri-Dec.1]

Doctor,

I am sorry to bother you, I am sure you are very, very busy.  I am commenting back to you to assure you did indeed receive the responses to the questions that you requested from me. You originially answered my post on December 17, 1999 and seemed to have confused some of the facts.  You requested some more information from me which I hope will help to clarify the facts.  It looks like someone (R0D)posted a question or comment with no regard to mine in error. I am new at this, but aside from that comment in error I have received a couple of comments as you can see from some wonderful people, however, I had not received anything new from you.  I understand that your research may take time, but if you could just reply even though you have nothing to report, I would greatly appreciate the fact that you are still out there and looking into my post.
Have a wonderful holiday season.
Jules

[Leanette]

I hope all goes well for your little one Jules. Hang in there!!!
I'll be praying for you.

[jules]

Lynette, Thank you for your prayers.  We are still waiting, but I'm sure we're pretty close.  It just may take a little time.  Our specialist have not yet called back with any new news, however, they are very determined.  It is so nice to know that people like you, someone we don't even know can tend to understand the frustration and patience we must learn when dealing with the unknown.  Every day is good and bad.  No news is good news, but not knowing is very hard also.
Thank you soooo much for your kind words and I hope you have a wonderful holiday season.
May God Bless you and your family.
Jules

[CCF Neuro[P] MD, RPS]

thanks for your concern.

CCF Neuro MD

[joan]

dear jules, Something like this happened to my son 2 years ago. after all the test, the same ones your child took he had a problem with the tilt test.  after 2 weeks they discharged him with a diagnoses of stress.  They saw him black out too.  
after we got home the passing out continued.  My son was on zoloft. I went on the internet and looked up side affects of this drug and found out it had a rare side affect of postral hypotension. I stopped the drug and no problems.  I'm not saying this is your problem but It was very hard going throught this. you will be in my prayers!