Wednesday, August 20, 2014

Epilepsy Families: Noah's Journey (pt. 2)

Welcome back!! Here is part TWO of Noah's journey, as told by his incredible mother, Mallory. If you missed it, you can read part one HERE.

Back to you, Mallory!
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September 2013 Noah had a neurologist follow-up and it was at this time his neurologist wanted to get down to the nitty gritty and figure out why Noah was having seizures.  Noah’s neurologist was going to schedule him for an up-to 7 day VEEG (Video EEG) as an inpatient.  While in the hospital they were ordering a high-resolution MRI, and a SPECT Test (with and without dye).

November 2013 Noah was admitted in the hospital for his VEEG, MRI, and SPECT Test.  We only had to stay for 2.5 days because Noah had enough seizures while at the hospital that they were able to get all the testing done as well as obtain enough information that they were comfortable in sending us home. 

This was the results of his testing:

Study recorded 13 electrical clinical seizures (5 night one, 1 at nap, 7 night two) that all began with a tonic seizure followed by a cluster epileptic spasms.


"The EEG onset appeared to have arised from over the right posterior hemisphere near an area that appears abnormal on the MRI scan representing a possible focal cortical dysplasia.  These results and potential for surgical intervention will be reviewed at an upcoming epilepsy conference after which time the parents will be called with a recommendation."


After receiving these test results our neurologist from Texas Children’s Hospital informed us he was leaving to go to a hospital closer to his home.  We, thankfully, got added to the head neurologist at Texas Children’s Hospital.  We hadn't actually met him, but we had an upcoming appointment that we were looking forward to.

By December 2013, Noah was having a terrible time sleeping because he was having so many seizures at night.  Noah’s neurologist then added a second medication Clonazepam for him to take with his other medication, Trilepital.  The Clonazepam helped Noah sleep better, but he was still restless.

In April 2014 we met with the head neurologist, Noah’s new neurologist, at Texas Children’s Hospital.  This is what we found out:  We finally found out WHAT is causing the seizures?  Noah's seizures are happening due to Focal Cortical Dysplasia in the right posterior (back) part of his brain.  Basically meaning he has one spot (focal) where the tissue (cortical) of the brain is abnormal/not developed correctly (dysplasia).  The doctor told me this was nothing I did during pregnancy or anything Noah did since being born; his brain just didn't completely developed properly in womb.  The exact type of seizures Noah is having is called "complex partial seizures."

Another answer to a question we have was, will he grow out of the seizures/epilepsy? Here's the answer we got.  Most kids who grow out of their seizure disorder will have normal MRI's and have their seizures easily controlled by medication.  Clearly this is not the case for Noah.  His neurologist told us that unfortunately, Noah will not grow out of the seizures.  He will live with them.
We were then informed of the four ways to control epilepsy.

There are four ways to control epilepsy; with specifics on my son’s particular case:
1) Medicine

2) Surgically remove the area where the seizures occur (as long as they are in one location; if the seizures are in multiple locations, surgery really isn't the best option)

3) Special diet called Ketogenic Diet (not recommend by our doctor because it's a hard diet to follow and he tends to only do this for those with NG-feeding tubes; plus once you hit teenage age/adulthood it’s not recommended)

4) VNS (Vagus Nerve Stimulation) which is a pace maker that sends electrical shocks to the area of the brain where the seizures are occurring.

Our doctor flat out told us that Noah could have surgery now, but he likes to have two failed attempts where medication does not control the seizures.  Although Noah has been on four different medications since 3 months old, our doctor is only counting the main one he is on now, Trilepital, because the first two weren't for exactly what Noah has, they were more for the spasms; and the Clonazepam medication is not used as a primary medication to control seizures, it’s typically a secondary medicine.  So only with this information, Noah has only had one failed attempt to control the seizures.  With that said, Noah is getting another medicine to start this week, Onfi.  If the Onfi fails, meaning Noah cannot be seizure free (not even one) for 3 consecutive months than that will count as another failed medication attempt.  At that time we will then take on the surgery journey to remove the portion of Noah's brain causing seizures.

I asked his neurologist that if Noah proves the medication route doesn't work, then how long it would take to get him in for surgery.  The neurologist said 3-6 months.
 
We left that appointment with Noah’s third medication, Onfi (added to his Trilepital and Clonazepam).

By mid-April Noah had already significantly failed the new medication and the process of a surgery date had been started.  We met with a neurosurgeon where we all agreed that a Subdural Grid placement followed by a resection was our best option for Noah’s surgery.  With this route they gird is like an EEG, but on the surface of the brain.  This gives them a more precise location of where the seizures are coming from; the other option was to just go in and remove the focal cortical dysplasia part.  We didn’t feel that was completely necessary, so we went with the grids.

July 8, 2014 Noah went in for part 1, subdural grid placement, for his brain surgery.  Surgery for placing the subdural grids took 8 hours from the time he left our side until we got to see Noah in recovery.  He had an 8x6 grid placed, 48 little EEG monitors, and 4 internal probes that help determine the depth of the seizure.  I will not lie, seeing Noah in recovery was the worst feeling ever.  I have never heard such a painful, hoarse cry.  

I remember just looking at him and my husband and thinking, “what have we done?”  He had a drain from his head, a catheter, two IV’s (in the end he had 7 IV’s placed), an aterial line, blood pressure cuff, and the no-no’s (which are Velcro arm braces to keep him from bending his arms at the elbow).  The first 24-hours he didn’t sleep at all and was quite uncomfortable, yet in good spirits.  He was placed in ICU for 24-hours, and then we were moved into the Epilepsy Monitoring Unit.  Noah had multiple seizures the second night at the hospital including one that lasted 4 minutes long, which is the longest that he’s ever had to my knowledge. 


By July 10, 2010 (this happens to be my husband and my wedding anniversary, 2010) they were taking
Noah back in for his resection at 1:30pm.  This surgery, the right occipital lobe resection, took 12 hours.  When we finally got to see him in recovery he was in much better spirits then the first time.  The neurosurgeon told us that everything went well and that when they tested for seizure activity before closing him up that the EEG went from active before surgery to completely inactive after surgery.  We were thrilled.  Noah was placed, again, in ICU for 24-hours and then moved back to the Epilepsy Monitoring Unit.  






We were able to leave the hospital by July 13, 2014.  











Noah has been seizure free since July 10, 2014!!




This is the longest he has been seizure free in at least a year. 


Noah is a completely different kid.  He is learning so much in the past few weeks.  He can sing almost all the words to “Twinkle Twinkle”, before he only knew “twinkle”; he’s copying saying his ABC’s; he’s counting; and overall he’s more interactive with everyone.  Noah is also not nearly as, shall I say, naughty, as he was prior to surgery.  He listens more and understands what’s being asked of him, so that results in less time outs and more fun times.  My heart is filled with overjoy.  I will not lie; I fear that one day this will all end and the seizures will come back.  My husband and I have talked about this; we both agree that if he starts having seizures today that these past four weeks have been absolutely worth the surgery.

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Thank you, Mallory!! What a week it has been, sharing your story!

Now, for any new Epilepsy families out there, Mallory has also added a list of meds that Noah has been on, as well as their side effects. This information can be very helpful, as you are learning more and more about the condition that is a part of your lives, now. 

Remember, 1 in 26 people have Epilepsy.


Medicines & the Effects on Noah PRIOR to Surgery:
·         Predisone
o   Made him go from small/petite to very chunky
o   Made him very sleepy (slept easily 18-20 hours a day)
·         Phenobarbital
o   Made him tired
o   Made him irritable
o   Caused excessive learning delays
o   Eventually hated the taste and refused to take it
·         Trileptial
o   Made him tired
o   If increased too much too fast it would make him extremely nauseous and make him walk like a drunken sailor
o   Made him irritable, but not as bad as the Phenobarbital
·         Clonazepam
o   No bad side effects
o   Helped him get some sleep at night and control his bedtime seizures
·         Onfi
o   Made him tired
o   Made him irritable

7 comments:

  1. This is wonderful! I am so thrilled that Noah is seizure free. It's wonderful that he's learning so much easier, too. The seizures are rough on the brain. I am so happy for your family, Mallory. YaY. Thanks for sharing! I'm tweeting this. Also, Bethany, I'll email you Christoper's journey tomorrow. I've been getting ready for homeschool and trying to finish my novel. xoxo

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    1. No one knows that *specific* stress more than me! Take your time. :)

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  2. YAY!!! Happy "ending"! :D

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  3. Yay, Noah! Keep up the good work, Buddy!!

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  4. Natural herbs can cure epilepsy, I had epilepsy for over 14 years, i have spent a lot money getting drugs from the hospital to keep me healthy, I went to many hospitals for cure but there was no solution, One day I was in the office going through the internet when I saw a post about Dr Itua herbal medicine on how he cure a Lady from Kansas who was suffering from HIV and she listed Epilepsy as list of illness Dr Itua can as well cured I contacted him with epilepsy Cure solution, I email him. He told me the things I need to do and also give me instructions to take, which I followed properly. Before I knew what is happening after two weeks To my greatest surprise after patiently going according to instruction given to me by Dr Itua, my epilepsy was cure, I want to say a big thanks to Dr Itua who God have sent to heal his people with his natural medicine I pray that God will bless you for the good work you are doing.for all who are still suffering from this illness, you can also contact him through his email on :;;drituaherbalcenter@gmail.com Or Whatsapp Number...+248149277976 like they say his herbal remedy is the only permanent solution to Seizure. He Can as well cure the following... Herpes Virus, HIV/Aids, Hepatitis A/B, Shingles, Cold Sore, Epilepsy, Wart, Lupus, Diabetes, Men/Woman Infertility, Seizure, Cancer all types.

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  5. My son was diagnosed with a rare form absence status epilepsy. His seizures show no symptoms until the seizure has lasted for hours! The only warning we had was he started acting only tired at first then gradually he started acting confused and from there for 24 hours he didn't know what year it was, where he went to school, or even what grade he was in etc. his motors skills were perfect and he talked to everyone normal the entire time, he just couldn't answer certain questions. The hospital kept him overnight and gave him fluids and in 24 hours he slowly started remembering and they said he was good and sent us home. We know now that he was having a constant seizure the ENTIRE TIME of his confusion! Almost 3 months later he begins having the same symptoms when I woke him up for his 2nd day of school. we are sent for an EEG, which revealed at 10 am he was actually having what the neurologist referred to as the worst EEG he had seen) we then were sent to a different children's hospital where they observed him until 8:00pm, all this time my son passes every test, he is talking and his motor skills are completely normal! They finally begin his EEG around 9:00pm. It reveals he is still in seizure! They are blown away. Say they have never seen an absence case like his and they quickly gave him a big dose of adavan which immediately stops the seizure and he is able to regain his memory immediately. Does anyone have a child who has these same symptoms? His neuro doctor ordered a brain glucose test, but when we went for a follow up last week they said the test had been canceled and they had no idea what happened? When I asked if they were going to draw his blood and re do the test, they said that his medicine was controlling the seizures so far so they didn't feel the need to do the test! I need advice and some direction. I searched further; visited epilepsy websites, blogs. I find info about someone having the same symptoms. I was really determined. Fortunately for me, I stumbled on a testimony of someone who had epilepsy for several years and was cured through herbal medication. I read awesome stories of people whose condition were worse . But due to numerous testimonies. I was more than willing to try it. I contacted the doctor Gabriel, and my son used the Nectar herbs. It became a miracle for my son free from rare form absence status epilepsy within 3 months. The Nectar medicine worked without any trace of side effects on my son. totally cure. I decided to share my son story to tell people out there, that there is a hope for those with epilepsy using nectar medicine and anyone who suffers from seizures can be cured. Email dr.gabriel474@gmail.com

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  6. I want to thank Dr. Oda for helping cure my little sister from CONVULTION & SEIZURE. The embarrassing and scaring attack kept worrying my little sister for years until I heard about doctor Odas’s herbal cure, i gave it a trial hence we having been battling with the ailments and seeking for solution. Behold, it was magic. Both the convulsion and seizure gone after using the medications like it never happened. Quickly reach out to him for help/solution if you have such problem. He is also good at EPILEPSY CURE. Contact: (drodasolution@gmail.com) Tel: (+234 805 761 6299)

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