Dealing with a Dr. Dad and using someone elses medication

[invidia]

/sigh

I have been dating my significant other for about 2 years. He has never had a seizure since this morning. He has had fainting spells and deja vu for a few years-- even before we met.

I will start with this. My name is Courtney. I am 23 years old. My boyfriend is Alex, he is 26- almost 27. We don't drink or do any type of drug. Alex's sister is named Brooke. She is a twin who lost oxygen to her brain when she was born and has dealt with seizures for quite some time now. My main problem is Alex's father right now. He is Dr. Dad and thinks that since he googles information on the internet and calls people to get certain opinions that he is more knowledgable in the field of neurology then the Doctors.

This morning at 5:45am I woke up to Alex seizing. Blood and Siliva coming out of his mouth. It was the worst thing I have ever seen before. I called 911 and he was rushed to the hospital. He has never had seizures like this before. He has had some odd convulsions with his arm, but nothing to this magnitude. His father seems to know everything. He actually is writing a 'book' about Kenogenic diet and certain medication use.

My main concern is this: Mixing and using other peoples medication. I am a firm believer in using what only the Doctor prescribes. It is illegal to use other peoples medication and distribute them without a doctors concent. Alex was prescribed Phenytoin Sodium and Diazapam(Diastat) kit ((anal injection)). His father wants me to use Brookes medication as well, which is: Levetiracetam (Keppra) and Midazolam Inranasal WDEVI. I have no idea what mixing those other medications will do and i am fearful of risking the love of my lifes' life to find out. Do any of you know exactly what would/could happen if we were to use them.

Note: Alex is extremely healthy, minus this situation. He does have some hormone problems, is stressed, poor sleeping habits, and etc.

I want to know if any of you have experience with these meds and your opinions.

Thank you!

Courtney

[Cint]

Courtney,
Listen to the real Doctor, not Dr. Dad.

Brooke probably has different kind of seizures than Alex, therefore different medications.
Mixing and matching seizure medications can be very dangerous, leading to more seizures, status, becoming very very sick or dying.
Also, Alex needs plenty of rest and needs to somehow reduce his stress level.

Cindy

[Ann T.]

Courtney,

Hi & welcome! Please, please listen to Alex's neurologist & any other of his M.D.'s, NOT his dad. Does Alex's neurologist know about 'Dr. Dad' & that he wants you to use Brooke's meds whenever Alex has a seizure? Courtney, ignore 'Dr. Dad'. I don't want you getting in trouble for sickening your love on account of 'Dr. Dad'...

[invidia]

I really appreciate you opinions. I haven't had Alex's dads' opinions hinder my own judgement. I am sticking to what his doctor has ordered and am hoping that the MRI and EEG will pin-point the problem. My mother was brought into the situation because during the hospital visit his dad turned to me and said for me to leave. He told me to leave and go live with my parents so he could take care of his son. My mother was very distraught by his rudeness towards me and took some matters in her own hand. She contacted Brookes own neurologist and informed the nurse that his dad is telling him to use Brookes medication. I actually also found out that his dad has had an addiction to Benzodiazepines. It makes me worried for Brooke. I am not sure what he is doing and I am starting to worry for her own well-being.

Even though I love my boyfriend with all of my heart and I would want to be with him forever, he is an adult. I know he has to deal with what his dad says and then what I say. I am just trying to do enough research to make sure that I am doing everything right to ensure his health when he isn't mentally capable.

Thank you again for all your helpful suggestions. It is easing my mind so much right now.

[alivenwell]

What an over-the-top domineering 'Dr.' Dad! He insults the medical profession. Absolutely amazing.

Frankly, it's possible Dr. Dad may visit. If I were you, I'd lock up any medication that may go out the house unseen. These drugs are controlled substances and it can be a federal offense to distribute them to a person other than one to whom they are prescribed.

This is what I'd do. Have your boyfriend pre-count all medication, take note of its appearance including text/code/numbers and dosages. Make sure he DOESN'T take his sister's medication(s). Or YOU will be in trouble. It's quite serious.

Frankly, his sleep pattern sounds like it needs some drastic improvement. And stress management is a great way to manage this disorder. I personally walk my active dog every night, listen to soothing music and do anything that breaks my stress level. A fresh environment can do wonders for him. But, keep in mind, any vacation needs to also adhere strictly to medication(s). My dog is highly supportive and very dedicated to me. It helps.

[RobinN]

My daughter was "extremely healthy" too. She is a competitive athlete. However, after learning about nutrition, I have learned how terrible her diet was. I prided myself in home cooked meals every night, homemade lunches, and breakfast at home. Even still, as I look back, the ingredients and choices were all likely to lower her seizure threshold.

I can't even imagine what is going through this dad's mind right now. He seems a bit off the wall. I am also a Dr Mom, but I have worked with the neurologist and been given encouragement to continue with what is working for us. My daughter is med free. I would never want to administer multiple meds, to a body that is already out of balance. Poor guy. He must be going through H*ll with a daughter that is not well, and now his son. Really tugs at my heart strings. He is grasping at anything it seems.
There is nothing worse than a chronically sick child, and now he has two.

Such a shame that two people that love Alex, have to be a odds with each other.

Welcome to CWE by the way. We are glad that you felt comfortable to share your story with us. I hope you find the help that you are searching for here.

[Bernard]

Hi Courtney, welcome to the forum.

... He has never had a seizure since this morning. He has had fainting spells and deja vu for a few years-- even before we met.

There are actually many different types of seizures. Fainting spells and deja vu are possible symptoms of tonic or atonic seizures (fainting) and simple partial seizures (deja vu). Alex's neurologist should be made aware of this history.

If you are new to the world of epilepsy, I'd recommend you read through this thread for some important background info:

Epilepsy 101 - Part FAQ, Part tips and advice

... This morning at 5:45am I woke up to Alex seizing. Blood and Siliva coming out of his mouth. It was the worst thing I have ever seen before.

It can be traumatic, but the blood is usually indicative of a lesion in the mouth (ie. he bit his tongue during the seizure). The saliva/frothing is fairly commonly expelled after the seizing has stopped and they struggle to get air into the lungs again.

... He has never had seizures like this before. He has had some odd convulsions with his arm, but nothing to this magnitude.

Those could be either complex partial seizures or myoclonic seizures. Alex really should have been evaluated by a neurologist a long time ago because it sounds like he has had uncontrolled seizure activity for a while. When seizure activity goes uncontrolled, it can get worse (resulting in generalized tonic clonic / grand mal seizures for many).

... Alex was prescribed Phenytoin Sodium and Diazapam(Diastat) kit ((anal injection)). His father wants me to use Brookes medication as well, which is: Levetiracetam (Keppra) and Midazolam Inranasal WDEVI. I have no idea what mixing those other medications will do and i am fearful of risking the love of my lifes' life to find out. Do any of you know exactly what would/could happen if we were to use them.

Phenytoin / Dilantin is usually well tolerated though it can have some strong side effects if you are taking a high/toxic dose.

Diazapam is basically valium and should be taken only in emergencies. It is highly addictive.

Keppra is a newer drug so it's more expensive than Dilantin and I'm sure that the full range of long term side effects isn't known yet (unlike Dilantin who's long term side effects are well known). Keppra is the only anti-epileptic drug that metabolizes in the kidneys instead of the liver.

You can research drug interactions on the web sites listed here (or call your local pharmacist and ask him/her - they are the specialists in this field):

Drug Interactions

... Note: Alex is extremely healthy, minus this situation. He does have some hormone problems, is stressed, poor sleeping habits, and etc.

Poor sleeping habits have a HUGE impact on the seizure threshold (see these sleep discussions). I strongly urge you/Alex to establish a regular sleeping pattern.

... His father seems to know everything. He actually is writing a 'book' about Kenogenic diet and certain medication use.

After so many years of participating in numerous epilepsy forums - interacting with literally thousands of epilepsy patients and their caregivers, I consider myself to be an expert patient, but I am well aware that my knowledge/experience falls well short of the type of complete medical knowledge that neurologists must attain to practice in the field. No one knows everything.