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

[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