Monday, June 2, 2014

4th time's a charm?

Snoozing in the hospital waiting for a discharge!  How stinking cute
is he??
We are all really happy to be home under one roof again.  Luke had a nice day and is doing pretty well.  He's still unsteady but we expect that. 
The great news is that we were able to meet today with Luke's new doctor,  Dr. Weisenberg. She is very direct and a great listener.  We were concerned about increasing one of Luke's medications because the current medications are clearly not working.  She agreed and we are immediately going back down to our regular dose.  We started his new drug,  Onfi, tonight.  The scary thing about it (well some of the scary things!) is that some of the side effects were things we typically watch for as pre signs of seizures - clumsiness, extreme drowsiness, drooling...so that makes it even trickier to determine if he is having seizures or about to start having seizures. 
One of the reasons that provoked my hate post yesterday was the way his seizure presented Saturday night.  My mom was watching the boys while Dan and I ran down the street to grab a drink.  I told Grandma 'Ancy (both boys drop the 'n' in Nancy!) that she shouldn't talk to them because they'll both talk as long as she'll let them.  Luckily in true Grandma fashion, she ignored me and was having a good old time talking to the boys.  Ben - who was NOT tired - fell asleep pretty quickly.  Luke was pretty chatty, though, and she and Luke were having a fun little conversation.  As she was talking, she realized he had stopped responding.  She looked at him and noticed his eyes were deviated and he wasn't returning conversation. She immediately called us and we were home within 5 minutes.  As soon as we saw him, we knew he was indeed having a seizure.  We were able to administer the emergency drug while calling 911. 
On a normal night, it would have been me in bed with the boys.  I sleep with Luke every night while Dan watches the monitor.  When I put them in bed, I usually read a book on my phone or Kindle and remind them to be quiet so that they will fall asleep.  If it would have been me in there - I have no idea how long it would have/could have taken for me to notice he was having a seizure!  He never threw up after that seizure which is how we find out a lot of times he is having a seizure.  As he is seizing, Luke's blood oxygen starts to deplete.  It usually takes a little while but either the seizure or his head position begins to compromise his blood oxygen.  We have always counted on him throwing up during his nighttime seizures to alert us to a problem.  So we were even more anxious to bring him home because nighttime is a scary time in our household.
He was hooked up to the pulse ox machine during the night because he went into a second round of seizures and his O2 levels were dropping.  I mentioned to the nurse that I wished we could have something like that at home and she said a lot of epilepsy families use them.  I've looked for nighttime devices before but they are mostly for seizures with movement involved - Luke has ZERO movement.  Zero.  Anyway - long, long story with discussion back and forth - but Dr. Weisenberg sees how something like that could bring us some peace of mind and is going to have her nurse start looking into how we could get one to use while he's sleeping.  Truthfully, if we got one it would only really detect a seizure if he's been in it for awhile because it usually takes awhile for his O2 levels to drop.  But at least it would be able to tell us that his breathing was reaching dangerous levels.  It's better than what we have now - which is nothing! 
So all in an all...Dr. Weisenberg is a hit.  AND even better - we're still seeing Dr. Smyser in 6 months to check in, too.  Best of both worlds! Yay! 
Fingers crossed that the saying '3rd time's a charm' is inaccurate and they really meant '4th time's a charm!'  Go Onfi!! 
Attempted selfie with my other little monkey who I was excited
to see....this is why I don't take selfies.  Well, one of the reasons. 
I took 3...this was the best one! 
 

8 comments:

  1. I had an epileptic fit for the first time 5 years ago in the middle of supermarket on my birthday of all days, wasn't fun for my kids to see it, it still haunts, I've tried many anticonvulsants and had never been able to stop the seizures. Surgery was not an option. I was still an epileptic patient, who have completely lose hope. As the problem is always embarrassing and disturbing. While surfing the internet one fateful day, I learned about Doctor on the internet called Lawson. I contacted him with some info and I ordered for the Herbal medication and used the medication for 6 months, though hesitantly, considering the fact that I have done a lot of procedure. After which I went for medical test It worked! I've been seizure free, Over a year now, I have not show any symptoms of seizure and I believe I am cure if you want to contact him at this email dr.lawson52@gmail.com.+1(936) 657-1274

    ReplyDelete
  2. My son recently started having grand Mal seizures at 16 years old. We were prescribed Kepler. We decided NOT to take the medicine and go with a Modified Atkins Diet that entails feeding our son 15 carbs a day with lots of healthy fat. He eats a lot of grass fed beef, free range eggs, organic low crab veggies and is doing fantastic! We could tell a difference in him by the 3rd day. This is not alternative or junk science. Dr. Lewis hill at Johns Hopkins has been championing this diet for years and has been really successful. Doctors are really resistant to this therapy but it works!. Read "Grain Brain" for why it works. He also takes taurine which helped stop the night time teeth grinding, jerking, and unrest in his sleep (also known to stop seizures). And he takes cur cumin as a brain protestant that raises seizures.one day came across Albert post thanking Dr Lewis hill for curing his son seizure problem, and i got the contact of Dr Lewis hill i quickly contacted him then he made me to know that the medication is 100% permanent cure, and that was how i got the medicine which i used for my son, after which i took my son for medical test It worked! Over a year now, my son have not show any symptoms of seizure and I believe my son is cure if you need his help email him on drlewishill247@gmail.com or call him on +1 (323)244-4884

    ReplyDelete
  3. I had my first seizure. I was in high school and didn't want anyone to know that I had epilepsy. I had seizures on two occasions. I was so ashamed and didn't want people to think that something was wrong with me. I finally got to the point where I told people that I had epilepsy. I came to the place that I realized that I had to own my epilepsy or it would control me. Epilepsy hadn't really affected my life until about 9 years ago after my first child was born... I am a wife and mother of two beautiful children. I have lived with epilepsy for 20 years Yet, my life has been dramatically impacted by epilepsy. I had search for cure online without no hope. I met a Man called DR Lewis hill, i contact him I made an order of his medicine and I do not experience seizure anymore i was cured form it. So if you are in the same situation as mine contact him on this email drlewishill247@gmail.com or call him +1 (323)244-4884

    ReplyDelete
  4. How I Was CURED After 15 years of Seizures and Complicated Medications.

    I was diagnosed of tonic-clonic grand-mal seizure 30 years ago. It became a life of medication for 15 years. My job was affected; I was no longer permitted to drive. I went through pains of depending on someone to help me up everything the seizure came. To avoid further injury to my spine, and head injury, i started using wheelchair. My legs were perfect, but the frequency of my seizures, made my doctor suggest a wheelchair to save me from further injuries resulting from falls. Seizures were hell, but the medications I was placed on, became a serious battle. Complications, severity of pains, it also affected my Liver. Couldn’t stop because, of what might happen if I do. I lived in fear for years. I was caged, by epilepsy. What I enjoyed doing was taken away from me by seizure. I became desperate for a cure. I believe when one is pushed to the wall, the only option is to fight back. I went everywhere, foundation, made friends, listened to stories, went online searched blogs and read comments. God favored me when I saw a blog that mentioned a Herbal doctor that his medication cured a lot of people. I visited his blog and contacted him.
    Today it has all become a past. I cured my epilepsy using HILTON anti-seizure herbal medication. I believe everything is possible if we are desperate enough for a change. My name is Harry I’m seizure free again after 15 years. If you are going through seizures or epilepsy, believe me I know how you feel, I have been there. I cured mine through HILTON herbal medication, I'll encourage you try this medication; I believe it will work for you. Follow this link where I saw the information that changed my life. www.seizurecure.blogspot.com

    ReplyDelete
  5. HERBAL MEDICINE: OUR BREAKTHROUGH
    My son was diagnosed with epilepsy in his early age (4years), there was no known cause or reason, many investigations have since taken place to achieve a diagnosis, It came from nowhere. I cannot describe to you how helpless we feel as parents, our happy life was turned upside down. We felt shocked, devastated and utterly helpless. All we could do was to hold and comfort him. His seizures contributed to his lack of developmental progress. If he was in the midst of doing something he would fall over or just curl up into a ball. I also have a Youtube video. It is a very difficult symptoms, despite continued medical intervention we are unsuccessful in stopping her seizures. We have tried multiple medicines, including CBD and a special diet, but all to no avail. Dr. Allen!!!, your input bring about his recovery. I will forever be indebted to you. I was delighted to share this information to Epilepsy Research UK, and I would urge anyone who also have same symptoms to try such a worthy path because this is the only way to improve the lives of those diagnosed with epilepsy. To get more information, write drallenchase@gmail.com

    ReplyDelete
  6. Hello everyone. My name is Ray; I am a Lieutenant in the Navy deployed to the Persian Gulf. I have been in the Navy for 15 years and never had any medical challenge except minor headache that results from training which pain killers took care of. My first seizure occurred 3 years ago, although I lost total consciousness during occurrence and never knew what happened, but my roommate witnessed everything. I learnt the entire episode when I regained myself in the military ER. I was examined and the Navy Doctor told me it was Tonic-clonic seizure, which treatment drug was immediately recommended for me. I was placed on medical leave for proper treatment, and Depakene was given to me as a treatment measure. I also took various AED’s medications which caused me side effects. I love my job, and do not want to be discharged on medical ground. As a result, I went in search for more knowledge on seizure as well as its cure. When I first read about seizures and its causes, I was not surprised because I have had various head inquires resulting from training, but I never knew it’ll be complicated and result to seizures.

    After taking various anti-seizure Pharmaceutical drugs without a cure, I dropped all of it and went in search for a natural alternative. While on medical leave, I had full access to internet where I read of a Herbal Doctor called Mohan. I followed his blog and read a lot of shared testimonies of those who had used his HILTON Anti-seizure medication on various epilepsy and seizure blogs.

    I was in need of a cure and was desperate to drop off Depakene. The herbal treatment gave me a cure total from seizure. Today, I have been certified seizure free after various MRI examination. I have not experienced a single seizures episode after using HILTON Herbal treatment. If my story is like yours, you may contact Dr. Mohan via his blog to know more about his treatment on www.seizurecure.blogspot.com

    ReplyDelete
  7. Am One of the happiest woman on earth since my son was cured from the problem of seizure,which he has been having for eight years now,he do have the attack two to three times a week,which is affecting is education and his life.i got the contact of a doctor from the post of one Mr paul thanking him for curing his seizure problem,i got the contact and contacted him then he made me to know that the medication is a permanent cure, and that was how i got the medication which i used on my son,and for six month now there have been no sign of seizure in him again.any one with such problem can contact him on his email drwilliams098765@gmail.com

    ReplyDelete
  8. ALL THANKS TO DR WILLIAMS FOR THE GREAT DEED HE HAVE DON FOR MY FAMILY.This information will be useful for Epilepsy patients who is willing to use herbal medicine. My daughter had temporal lobe epilepsy, She had seizure and had a grand mal with rage episode. Our daughter's seizure is constant throughout the day. We had used several medicine which include: Epilim and Keppra, experience seizure control at the cost of serious debilitating side effects. It was during a casual conversation with a friend that I learned about herbal Dr. William, it does not have any side effect. I am glad to say that he has been seizure-free since July 2015 after taking William medicine. this a miracle cure?contact him for more detail (drwilliams098765@gmail.com)

    ReplyDelete