Issues New To This.........

[Juana]

My beautiful healthy daughter age 16 started having episodes a few weeks ago. They started in the afternoon she had 4 in a few hour time span. When it was realized that they were episodes and not dehydration (after two episodes). We rushed her to the mini er clinic, she had an episode there. Two hospitals and 1 mini clinic later. She was admitted. Her heart rate was under 37. She could not control emotions, muscle tone weak, eyes dilated, incoherent conversations, chattering teeth and other symptoms. They did ekg when we walked in. Fear that she was dying. She came out of it. They tested for pregnancy, drugs, toxins, co2, thyroid, blood sugar and etc. all fine. They did eegs, ekgs, cardiograms, and ct scan (after she was stable on 2nd day in hospital) and nothing.

She was brought in on Thursday afternoon 4 episodes, Friday 1am (one) 4am (one) 9 am (one) and no more while at hospital. Testing started 1pm on Friday. They released her at 6 pm on Saturday. So, frustrating. No post op care instructions, only follow up care. Said she can go back to school on Monday.

Tuesday 2:45 am she was woke by a pet in our home. She came down to check the food dish. I heard her get up and came down with her. In a matter of minutes an episode came on. She was able to slump over and was fine after 25 mins.

Her Ped has pulled her from school until we figure out the seizures and get her medicated/ treated. It is not safe for her to be alone. I have to work from home, which my boss is not pleased with. She is sad, misses her friend and the last weeks of school. School not suppportive. Teachers have not sent work home. School board has not approved her being placed on a home bound program.

Doctors are not helping Cardio says it is a Neuro issue. Hasn't seen her yet. They would not let her come in for a halter monitor until we have a note from Ped. Got note. Refused to book unless she faxed. Faxed and still nothing.. four days later. Now we have to wait to hear from them on Monday and her appt is Wednesday. Think they are doing this on purpose because they don't see a need for it. But when she has episodes her heart rate crashes and would be a good indicator that she is still having them when she is in bed. We did sleep study Tuesday night, but i was later told that you would have to do it for a week if you have flux episodes because they are random.

Neuro won't see her until end of month. Frustrates me because i cannot work and she has no life. They (office staff) is rude. Would go for another one but this one is the one that everyone is referring. Ugg.

Any advice?

 

[PhylisFeinerJohnson]

Juana, I think it's time to find another doc. Here's a link to GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors from the eforum members of EFA who have had positive experiences with docs over the years.

This list is based on personal recommendations and, of course, is purely subjective. But I thought it might be a helpful to you. http://www.coping-with-epilepsy.com...ileptologists-neurosurgeons-pediatric-d-9275/

Also, an interesting factoid: many kids get epilepsy disorders during puberty because of raging hormone imbalances. As if being a teen isn't bad enough!

 

[Juana]

Thanks so much... we are doing all we can to keep her safe and happy until we can get to a specialist... I will review the list and see if any are covered under her healthcare plan.

 

[Nakamova]

Hi Juana --

Hugs to you. You are at a tough stage of your daughter's seizure disorder -- no official diagnosis, no official treatment, no official plan for keeping her safe at home and at school. It sounds as if you are doing everything right. Keep pushing and being proactive. You can't be too aggressive in trying to get the doctors (and the school) to pay attention. Many here at CWE have found that it can take a few tries before finding a good epileptologist or neurologist.

In the meantime, is there anything at all that might have triggered the initial round of seizures? You mention dehydration. That can be a contributing factor, as well as things like hormones, infection, fatigue, stress, etc. Even though she was tested for low blood sugar, that isn't necessarily ruled out, since the definition of "low" varies from person to person, and a teenage metabolism is especially prone to swings. In my case, it was probably a combination of factors (fatigue, stress, low blood sugar, high aspartame, and perhaps a very old head injury) that brought on my first seizures.

As for the tests -- An MRI, or a multi-day EEG and/or a sleep study may be more likely to produce results. Some people never have a positive EEG, despite definitely having epilepsy.

I hope you get some answers soon. Feel free to ask a lot here at CWE.

Best,
Nakamova