Need Advice......

[JuanitaMarkovich]

I am going to share my daughters story. It is very dear to me and I could use advice, as we have never been down this road before.

Thursday, My daughter (16) had 4 episodes- one at school end of day, one in the car with friends on the way one, one at a friends house (The car ride went home and told their mom and she came back and got her. I was not home), and one at the Mini Er (I took her when i picked her up). She was rushed via ambulance to hospital and then transported later to the larger hospital with a Ped Neuro. She had a heart rate of 32-37 and bp was so low they could not get blood.. her veins were collapsed. She was tested for Everything at that point... ekg before I even gave them a consent form. They thought she would need shot or paddles to jump start her heart.. she was fading.
Everything at hospital came back great.. ekg (low heart rate under 40) but no heart damage detected, no drugs, pregnancy, ct and xrays good.

Friday at 5 am episode that lasted off and on til 5:30 again heart rate went under 40. She had another one that she tried to control with steady breathing and not getting scared around 9 am. They did not do eeg or cardio work up until after 5 pm... she was stable from 9am on. They said that they found nothing and only spent 2-5 mins with her. Specialist never came back to see her before she was discharged on Sat. Night. They did not give us post op instructions other than to see Nuero that did not spend time with her in 4 weeks and f/u with ped. No meds. No direction.

They did try to trick her into having an episode... lied to her to see if she was inducing them herself. Uggg.

How do I get her to get help. I am so worried about her well being... I did see school and they have a "plan" to keep her safe. Her ped is going to see her tomorrow. However hospital has not sent over paperwork.

Her symptoms are Complex Partial Seizure to a tee with simple symptoms too.

Please tell me what to do!!!!

[aajlh]

Hi Juanita

You must be feeling really worried and scared for your daughter and unsupported by the medical profession.

I have a 17 year old son who has had epilepsy since he was 10 years old.

It may or may not be the case that your daughter's episodes are seizures and may or may not be the case that she has epilepsy. Has she ever had any other indication in her life that she might have epilepsy by similar episodes earlier? Does anyone else in the family have epilepsy? It may be a medical issue unrelated to epilepsy.

It is very common for people with epilepsy to have their first seizures during adolescence. Assuming she does have epilepsy and these episodes are seizures You really need to get her to a neurologist who specialises in epilepsy ASAP so that you can tell them the symptoms and have an EEG done (a non-painful, non-invasive, perfectly safe and easy to do, scan of her brain) to see what they find. In the meantime I, personally, would be keeping her home from school and with me at all times till I had more information. She may not be willing to cooperate with this idea though. The drop in blood pressure and changes in consciousness can be very dangerous if she were to do it again when no one is around her to call an ambulance and if she were to walk in front of a car, train or bus in that state. At the very least I would ensure I dropped her off at the school gates and collected her again myself so she was no where near roads and public transport.

I know my son, and a lot of other people with epilepsy, have seizures when blood sugar levels get too low so I would make sure she is eating well and regularly, every couple of hours. I would ensure she has enough carbohydrates to keep her blood sugar levels up but combine them with protein and fats so that she keeps her blood sugar levels stable and doesn't have spikes of high and then low blood sugar levels.

I would also ensure she gets to bed early enough because sleep deprivation is also a big trigger for seizures (as can be alcohol and other mind altering drugs).

Best of luck with finding out more about what is happening to her. Educate yourself as much as possible about epilepsy. Also remember that epilepsy doesn't have to be a terrible thing in her life, it may mean she has to be more careful about sleep and diet and remember to take medication but whilst some people with epilepsy have a terrible time and it has a massive impact on their lives, many other people with epilepsy lead perfectly normal lives and unless they tell you they have epilepsy you would have absolutely no idea they have it and they can live free of seizures. The people who suffer more with epilepsy are often those who develop it very early in life so your daughter has an advantage that if she has developed epilepsy she has had 16 years free of it to have a normal childhood. My son is one of the many lucky ones who has seizures (absences and tonic clonics) if he has sleep deprivation, fevers, low blood sugars but he is now controlled on medication and has his drivers learners licence. If he gets sick with a fever or is sleep deprived he doesn't drive till he is well again. He is a great outgoing and popular young man who is studying for a career in dentistry so whilst it's a hassle with challenges (like living with diabetes) now he knows his triggers for seizures he lives a normal life.

Your daughter may be uncooperative because she is scared may not want to know what is happening to her so unwilling to go see a neurologist. The fear of the truth, however, may be worse than the reality. She does need to see a neurologist though and she may find that knowing what is wrong and how to deal with it will give her knowledge and the power and control to deal with it so she can be safe and get on with her life.

Best of luck with everything.

Anne

[rein08]

You must be feeling really low.
It's very saddening.
Gooluck.
Do not forget to cheer up.