Discussions By Condition: I cannot get a diagnosis.

Any one have any suggestions? (Possible seizures)

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: looking_for_help
  • May 2, 2007
  • 03:19 AM

I posted this under neurological, but thought more people might see it here.

I'm desperately looking for answers for my daughter. I will try to keep things logical, and it will probably be kind of lengthy.

When she was small, around age 3 or 4, we noticed that she had dark circles around her eyes, but the doctor said she was fine.

At the age of 5, she had a couple of episodes of 'fainting' and falling, one time observed by a doctor, who thought it resembled a seizure. Checked with EEG, nothing showed up. Her family doctor thought maybe a virus.
Nothing further until about age 7/8. A few more episodes, occasional vomiting afterwards. It happened whether sitting/standing. Then nothing for a while.

At age 12 1/2, she began having these spells in earnest. (Coincidentally, she started menstruating about 2 months later) She did not always lose consciousness, though sometimes she did. The doctor tried to treat her for migraines, vertigo, checked for diabetes. Said it was nothing.

We decided to see an endocrinologist. He diagnosed her with hypothyroidism (which I also have). He thought maybe orthostatic hypotension, as he observed her with some very low blood pressure readings (went down to 78/ something at one point, though she did not experience symptoms at the time.) She was put on florinef, along with cortef because of a questionable acth. However, adrenal insufficiency was the diagnosis, and based mostly on symptoms. Despite the florinef along with cortef, the spells did not stop. We are now questioning the adrenal insufficiency.

The spells happen often, mostly in school, although a couple of the worst were at home. We aren't sure if this is related to early rising/stress/something? Because she truly loves to go to school, and is actually upset because we keep pulling her out and going with homebound tutoring because we are afraid something will happen.

The worst episodes were awful. At the age of 13 1/2, she had a particularly bad 'episode' at school. I went to pick her up as was my custom in that type of situation. She wouldn't speak, and her eyes kept darting. On the way home, I was asking her for details, which I always keep track of. It didn't take me long to realize that she had some sort of amnesia. She knew who I was, and her little brother, along with a cousin and 4 of her friends. All other people/places/events were gone, though she retained book knowledge. We took her to the E/R, had her checked out. Had to fight to keep her overnight because they wanted to send her home.

Some small stuff came back, but not much. On Christmas Eve, two months later, she had another spell and wandered off. It took a couple of hours (with family, friends, and police) to find her. She had lost all memory again, including myself and her brother. She remembered a few friends, and that was it. That has also not come back.

Several weeks ago, she had a bad spell at home and forgot everything again, however, the next morning she woke up and had lost just the previous day. Her last memory was from 2 days before.

I will give you the description she gave me of what happens. She feels it coming on, but can't really describe how she knows. When it happens (which we have observed, as well as friends and the school nurse) she trembles and can't stop (her hands and arms especially) At times she starts to feel her vision fading (she described it as a camera where blotches slowly cover the view) Things are foggy, and though she can hear people asking her questions, she can't really respond, though sometimes she can nod or shake her head. It takes her awhile afterwards to feel better. There have been only a few times these past couple of years, none in school, where she literally went down and passed out, and had some rigidity, but this was when she was either having blood drawn, or when she was tested while fasting, and once while having ultrasound on a finger that had been broken and she was receiving physical therapy for.

Just last week, at school, she was in class. She said she started to feel it coming on, and she was shaky, so the nurse came and sat with her. The nurse gave her a snack, though it didn't help. A little while later, she had no idea where she was or why she was there (she was in class) She knew everyone around her, and her school which she was in, but just had major confusion. We brought her home, needless to say.

Something else we have noticed is the skin around her eyes is a kind of dark/ almost bruisy yellow color, but the whites of her eyes are fine.
We have done multiple EEGs, which have been fine, but she never seems to have an episode while hooked up. The last neurologist we went to thought it was psychological since he didn't see anything. He wouldn't listen to anything we were trying to tell him concerning amnesia and episodes. However, we are going to try another 24 hour EEG, and we are scheduled with some good pediatric endocrinologists for a check up and to see if she truly has adrenal insufficiency, though her symptoms have not improved.

If anyone has any advice or suggestions, I would love to hear them. We have seen so many doctors and tried so many things, we just want her to have a relatively normal life. This process has been so long, and she's upset because we may have to pull her back out of school for the remainder of the year because we're afraid something will happen. I pray that we can find an answer soon.

(Forgot to mention we followed blood sugar for a while too, nothing significant happened with that either.) She has 3 siblings, all of whom are pretty healthy. She herself is about 5'4", 120 pounds, very athletic (One of the fastest runners in her grade, and the fastest girl) She loves school, loves to write, and is easy-going, though a bit shy. (and 14 years old)

If you need any information (after reading this book-long post) just let me know. Thank you for any help, I truly appreciate it.

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4 Replies:

  • You should video tape as many episodes as you can and show them to your doctor.. also try to get an appt with a neurologist.. when a diagonosis doesn't jump out at the doctors, you have to be very agressive with the care and find the right doctor who will listen to you and believe what you are saying is true.. start a journal and keep up with all symptoms.. keep us posted.GaNurse
    Anonymous 42789 Replies Flag this Response
  • Myalgic Encephalomyelitis read where I've posted you'll see a pattern your daughter is not the only on all agesboth sexes visit www.ahummingbirdsguide.com There appears to be many...I am one...mommy cat
    mommy cat 1654 Replies Flag this Response
  • My brother has epilepsy (which I am sure she was tested for) but after he would have a seizure he would be very confused and disoriented not sure what was going on or where he was. He also went through periods as a child where he would have a seizure, but until he hit puberty and the seizures were stronger and more often is when he was diagnosed. He continued a normal life on daily medication until about 6 yrs ago (I think) when even on the medication he was having seizures and loss of memory (however, it was never as severe as what you are explaining with your daughter) anyway, he went to many doctors and they tried alot of medications and combos and could not help, so he was sent to mayo clinic for a two week study. He was taken off all medications and hooked up to everything for two full weeks. They could see his episodes and soon discovered when a seizure would come on his heart actually stopped beating and now he has a pace maker (he is only 36 right now) and a new combo of medicine that is working. Get opinions until you get answers. It sounds kinda crazy but I was wondering if she is having more episodes at school because she may have to use the bathroom and doesn't at school and it could be triggering something?
    Anonymous 42789 Replies Flag this Response
  • Ganurse above is correct...a neurologist would be a good place to start Has he been tested for Chronic Fatigue syndrome or Myalgic Encephalomyelitis It is confused with epilepsy sometimes I have stroke-like episodes at times...L sided weakness, flaccid, facial droop and unable to articulate speech before that I was, like many other CFS patients diagnosed with seizures...I also have flushing episodes when my face turns red and my blood pressure drops...I almost faint Your brother could have just 1 or 100 symptoms and still have this...please read last 4 pages of "It's a mystery until we solve it" There are many there having fainting, seizures, memory loss and so on...it is all part of the disease process Best of Luck...mommy cat:)
    mommy cat 1654 Replies Flag this Response
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