61- Living with Pediatric Epilepsy

These laws only stories that I believe Maha stays on his day in the mountains feel the same about us.

Seems to me that you must and I'll be gone soon with Amy, life can bring many difficult situations domestic violence addictions, poverty and even sexual abuse by your loved ones welcome Amy, and Q lot care, cowbell, joint.

I bought know the RCL is available right on your mate yet. I called the care our website a newspaper.com grant broadcasting live from Mandy via satellite and also live on pod this show deals with suffering and the tenacity of the human spirit. The will to survive in the carriage to keep moving forward despite any obstacle with the help of God and each other. We do provide testimonials to let people know that they are not alone in this shell. The testimony started with me having been a survivor from child abuse well into young adult. We also have professionals in the medical field and inspirational speakers that are willing to help and get valuable information because awareness is vital. Transparency is needed and I believe we all suffer from something as for me, my healing came from God, but other forms of healing. A percentage as well to service everyone life can be very challenging. But always know that they or someone who cares. That was story of my life by one direction. We all have different stories, different experiences, some of which we can't explain we suffer different things and which will be the words that will be written on our stone when we are gone.

Do miracles really access to be take life for granted is suffering necessary and can pain produce great purpose November is National epilepsy awareness month epilepsy is the progressive potentially deadly disease and one of the most common brain disorders worldwide, affecting more than 65 million people.

Epilepsy can be derived from a genetic disorder, head injuries and infantile spasms, which in itself is catastrophic as it sets then within the first 12 months of life. Chris degrees is the mother that experience these fears all too well being that she's the mother of one of these miracle babies who had survived infantile staff and resistant to medication, epilepsy in her first years of life. Her mother never gave up on hope and became the CEO and dictionary counter of Nikki's miracles, which is the foundation that promotes epilepsy awareness Christie dreams of the day that there are no barriers to care for children suffering from pediatric epilepsy. Christie, thank you for being on the show we are now live on you for having me think you Christie, can you tell our listeners a little bit about what epilepsy is and how it's diagnosed properly.

Catastrophic is when there is a disruption of the brainwave child or an adult, it's most common in children and in the older population.

It actually affects more people than autism disease. Multiple growth foods and rebuttal policy. Combine it yeah I very calm in a one and 26 people will have a policy in our lifetime and the more people die about what you then even breast cancer in our country or gun violence. But, unfortunately, is highly stigmatized from way back into the time of the Bible.

If you read people who have epilepsy were considered possessed by the devil. So we have a lot around epilepsy and sadly even though it affects so many people in our country and our world. People who have up what you're very scared to talk about it because there's deep-seated big my and unfortunately, discrimination can happen in the work and people really are comfortable seeing somebody seizing broad daylight and so carries it on and not but I'm determined to bring light to that we can have a conversation about epilepsy by grabbing today. But yes, it 6/10 people who have epilepsy they don't know the cause of it as he said 65 million people live with it. Unfortunately, 1/3 of those people living with epilepsy have uncontrolled seizures, so there they become seizure resistant and there's no treatment available for them without the area that we really need to focus on and bring light epilepsy so that we can raise research dollars something here and who would know somebody who lifted herself because I mean I saw your little girl on the Internet and she's a beautiful little girl that is so can you tell us about Kristi's story how I would love to so my husband and I he was a airport commander of a squadron airport for Northern California time and we had a little boy Preston and when he was old I got pregnant and I had a very healthy pregnancy. It was very enjoyable.

I didn't know what I was having like I did with the first drove my mom crazy but we are excited for the surprise Dan. I delivered the healthy beautiful girl who we named Michaela and her nickname is Nikki and everything was going amazing Amy.

She was healthy she was cooing she slept through the night we had our team down and at three months old. All of a sudden she became really irritable. One week and so I thought maybe you know maybe she just was constipated or you babies who do weird things so I didn't really know, but this happened day after day for about three days and I was getting to the point were like nothing's not right and it was Friday. I gave okay. My husband Gabe a minute call the doctor and get her in on Monday. The attrition I did feel like something's off I could console her and it was just so different than the little baby girl that I was. Things just know the past few months prior, and I remember having to put her in the carrier keep her from crying and in the middle of the night.

We had this routine where she was to wake up to be to eat in the middle the night my husband would get her to breast-feed her barbering changer on the bed and then I breast-feed her Barbara and put her to bed and when she laid her down change her diaper. Her eyes rolled back into her head, her arm out like a cross in her bed body defend as she had a 45 second seizure and I'll tell you it is still hard for me to not get emotional about it because it just anyhow I talk about it brings me right back to that moment but we as a society are not used to seeing a baby seizing not being that shown. I don't think that most people think about what you think about an infant or three months old me. She was so tiny and her little body was seizing for 45 seconds, then my husband and I hadn't ever been affected by epilepsy or knew anybody with epilepsy or look at him and he said I think that the seizure and Michaela go on to have eight more seizures over the course of the next 72 hours where we had the ambulance on one hospital the next because the first hospital was in a place to handle it. She was provided AND medication and it was really all a blur.

It was the time of our lives through years but be enjoying our little baby and the next thing I know Gabe and I would be taken into a sterile white room.

I knew it wasn't good.

By the looks on the doctors and the medical professionals bases and they told us that our daughter was diagnosed with infantile father and infantile spasms as well as catastrophic forms the child epilepsy is obsolete, devastating to the developing brain of a child.

There is its recognized by what's called a head's arrhythmia, which is an abnormal brainwave and is much the only way I can really describe it is think is if you are meditating in the desert and all the sudden you gun shot off in your head that hopping continually over and over and so the children become very curable, which was the sign the first sign.

Unfortunately for most people have epilepsy that infantile father is very very subtle and they didn't. They don't have the tonic clonic type seizure.

The Michaela had his bedroom. We are changing her diaper that that was the immediately recognition that we needed to do something and take action.

Many times this is misdiagnosed as colic or acid reflux because about your ability and is not until the seizures get very much more pronounced over time that that parent may take action now due to awareness receive more family take action, but as a pediatrician will only see a case of infantile spasms twice in their career. So many times this diagnosed, which is nothing double I and of yeah it does.

The meeting my maiming travel and is the cure will continue talking to Christie's after the short blade, please day with the caller 34 to life can bring many difficult situations, domestic violence, addictions, poverty and even sexual abuse by your loved ones. The issue is not stay there, but to overcome all obstacles been shouldered with the love of God, your husband and your family. You can succeed. Love is the answer. God is the key word reveals baby combos life, a warrior who didn't give up and achieve the dream of her life.

You can get to know more about her at her story on God is the key word.com or buying her book on Amazon.com.

He should really really good. Welcome back to the show the synergist union Mimi Calvo and this is the cure. We are live on your radio and social media look for this purpose.

Later, the show will be available as a focus search for the cure on any focus Chano or download our up the cure will look to have your feedback on our show so please visit famous purpose of, and fill out the survey about the short think you that was sign of the times by Harry styles. You can't drive your way to the sky either trust God or not.

Sometimes you get stuck, constantly running from the bullet whether it's drugs, alcohol, or something else having we been here before. It still. Everything turns out okay and how often must it be okay for us to trust God.

We are talking to Christie Greece about faith within the most difficult times. Christie, you are telling us about it. Michaela story, which by the way, I love that name came so I'm sorry that we have the short breaks that you are telling us about her. If you want to continue. So we get the diagnosis out 500 and catastrophic because 1/3 of kid. There is, they become drug resistant to the new form of theirs to guide the guidelines that have two different antiseizure medications as recommended for infantile spasms and we wait, watch our daughter from three months to 11 months old fail eight antiseizure medications one after the other after the other, it was just.

Also, I just want to make this clear. Seizures are not exactly compulsive can be a the air like a deer into the thinking stairs slowly or I had you know elderly eyes. Yes, they fathomed the mall becoming proctored and they can they can be an eye-opening drop her arms good, polite and and so but they progressed and they got worse over time were now 11 months old and Mickey filter eight antiseizure medication and I said to the doctor what and he just kind of shrugged and said well we could look into brain surgery at that point I knew that we had exhausted all the resources of the hospital and I I dropped the phone.

I was crying and there was a man working on some furniture at my house that day.

He was we had to send a military move and he is very hard to find somebody to restore your furniture and this gentleman probably thought I was losing my mind as I'm walking out crying and he said come here darling, tell your story and if I shared with him how devastated I was and he said honey, somebody's been introduce you to somebody who can help save your daughter and eyes. I didn't think anything of it.

I did the moment and not day I was driving my best friend from UNC in Southern California where I went to college called me and he said my niece just had brain surgery at chalk Children's Hospital in Orange County will you talk to my cousin I said absolutely so I got on the phone with his cousin and it was the mother of this beautiful girl Marina and she shared how her daughter had epilepsy and a gone to the best institutions in the country and was turning blue in the middle the night procedures and that people nobody was helping them and they got to the hospital a level IV epilepsy center which I didn't know even existed at the hospital.

The fully comprehensive and can handle all the modalities of treating epilepsy, brain surgery, deep brain stimulation antiseizure medications in the ketogenic diet that essentially through her as a stone instead somebody's been introduce you to somebody. She introduced me to Dr. Mary duPont pediatric Apple apologist, which is a neurologist that has gone on and had higher levels of training and can read the EEGs and MRIs and specializes in Napa. Let's see exactly. And so we got to her and it was the first time that I had a medical professional stand in front of me and validate all the really the maternal instinct that I had. I needed to save my daughter. I stood in front of a lot of doctors that were not affirmative but this is an urgent and I felt that inside in this Dr. take your daughter needs to be here and here immediately called the ship this point. She's 11 months old, while yes the shoe so the little girl and we drive down there a week later we get an appointment, which isn't always easy to happen. I had been praying deeply playing this whole time. I just kept asking God, give me a miracle please. II knew that this was we were on a track and I felt like my daughter was in a die and play for God please give me a miracle please give me a miracle and I've never really prayed that deeply ever before my life. I think my father was passing you know I had. I never really gone to prayer.

God prior to this experience every single day. It was Christ that was no baking in four to save my daughter and as we drive down to Southern California we get a call from the first hospital and they say the MRI is normal now. Mickey filter eight antiseizure medications. If you feel you have a 90% chance of failing all medications that you try after that and so I'm devastated Eggo and my husband said to Christie… Get in there and we get in there.

It was 360° care.

We had geneticists and hospitalists and nurse practitioners, and they did a full workup that I didn't experience the first hospital and Dr. Dr. duPont comes in and she says that MRI is not normal. There's a malformation over the hemisphere of your daughter's brain. She may be eligible for bring surgery and the miracle did happened the day before Mickey's first birthday. A surgeon removed her provide all her occipital and her temporal lobe in the left hemisphere of the brain where her seizures were coming from.

Her epilepsy and start her on the path of healing and really rehabilitation from from the disease and all the trauma that she had experience that point all that's uneasy, means, and she was still okay after that.

Was she able to take the medication that she react normally to late so she still on antiseizure medication today. I think we would happen as we brought her home and what we do as an organization is get children urgently to level IV epilepsy centers because the amazing thing is a child brain is very there's a lot of neural plasticity so that you can intervene and remove part of the brain where the seizures are coming from the other hemisphere.

The Mickey's right hemisphere took over for the missing left brain function as she didn't have any use of the right side of her body out of surgery but occupational therapy and physical therapy and on swim therapy and music therapy. She is totally rehabilitated out right side and Mickey and they said she would never walk or talk. She's in dance classes.

She's in swim lesson. She's in vocal performance using miracle because of early intervention and really you know this. She is a child of God, who is here to be a miracle not only for her own life. But for other people. Amazing.

And you know she does a more than regular kids do I see and determine which is been very helpful in her rehabilitation and her ability to grow and unite may have about this year will be right back.

I'm sure Brady will continue talking about how to recognize epilepsy in and out of my dressing is living with news say 2 will move soon to the live within the legal as soon. Welcome to the chair with Amy Cabot and Boris listen to us live on your radio every Saturday at 1 PM to a particular website he needs purpose.com though they miss a Boris Augustine at the book to show leg of the show will be available support costs. Search for the cure on any broadcast channel and also we will do really love to have your feedback on our show. Please visit famous purpose.com and fill out the survey. Thank you that was mammaries.

I am evidenced by life can be so magical when your kids when we don't know pain and believing for. After Christine make that possible for her daughter, for she always believed in her heart. Everything will be all right. Despite the pain and tribulations with God's help Christie this story that you kith of my Kayla is in a meeting story and it must of been a very difficult time for you and I'm glad King. It got close to God as a result, because you are able to experience his miracle and sometimes miracle is held just said that epilepsy's progressive TC and it's imperative early treatments is imperative right Boris… Continuing disease that the doesn't have a cure.

In many cases Alyssa Gotha surgery light up both of yes it is to be true. The soonest possible. I'm a doctor, but I've never heard of from chemical to the heart of the problem well what I was trying to get from Boris is that every time there's a seizure. It kills brain cells and consignees to get it can kill brain cells and and it and like I was always worried about what did you hear them is causing her brain damage, you know, I didn't know, and in a child.

The brain is developing seizures and particularly infantile spasms can be athlete traffic to that development and teaches the brain to wire incorrectly to these children. If it is not stopped me thereon feeding tube there in wheelchairs. It is very devastating and it's you there's worse things than that amendment the things that I see the families going through is not okay and there's a 90% divorce rate of parents with children with neurological diseases. The stress and the strain on you emotionally physically mentally is is just beyond recognition and it really something that needs to be addressed in our country. These children your you are really worried about what it is doing to their brain and with Michaela we found out that she actually had a rare disease.

She had a micro deletion on chromosome 17. A rare disease called: the pre-and Rome and 65 to 70% of kids without micro deletion how epilepsy lowers the cost and not rare disease comes with global developmental delay, so we knew when we found that diagnosis out that we would be dealing with her on development and we didn't know what her cognitive abilities would be, but we were just so grateful to stop the seizures at me know the day before her first birthday almost a year old. What tale tell sign you may not know. Did she see that she will know this is not colicky. This is more than colicky because that's progressive want them to be given to recognize Satan take care of it right away. And a lot of people even know about face for the first time something.they think hard. So.pneumonic with infant health topics for something.you maternally paternally know something is wrong with your child and something is different and wrong.

I knew that inside on fourth week of video, so it's really important that you while you're videotaping your also calculating in and counting how long the seizure took place. So it whether it infantile spasms which comes in clusters or the seizure by taking a video you have something to show your doctor so maybe Lee is stiffening up the body, staring all things like writing it with her had she had had dropped so if you go to Mickey's miracle.org MIP K i.e. at miracle.org to see a few videos that their very settles over her adjective diesel drop in a group of clusters when it like in a the shape went repetitively and this happens in a group of seizure and then and then it'll happen later on they call them clusters so they may not look like your typical seizure either no battle and you know infants are.

I don't know, I've been around a lot infants and they make weird movement go beyond though it's repetitive and many times happens when they wake up from sleep or after they've eaten because the brain and Boris and Dr. work and speak more intelligently about it.

The brain is I in him, and my semi-.Dr. Google explanation of it time are is not as alert into the seizures can kind of breakthrough that correct Dr. so-and-so just wanted to ask what to do for him and wanted to say what to do somebody sees a person with a seizure. Just please roll the personal use of her side to prevent Natalie yet or is anonymous take anything in the mouse house and something her head had no that they don't hurt themselves partly conference them. Your you imagine what it would be like walking in the world and never knowing when this could happen any people are burned. They fall through black people, they can fall into the railroad tracks thinking you know such a vulnerable feeling not doing what is happen if you knew that you can out of seizure Tuesday at 8 o'clock the not one thing that we now know to come for that person to say okay just had a seizure. Constantly you're okay your safe and and talk calmly onto the person until they come to is the best way to really bring them comfort when they come to they know something how things are, teaches don't know what's going on. They just wake up every day different from people who have apathy with carbon aura, so be patient in a seizures coming on, which is helpful so they can get in a position to be ready for that happen on and not by many people with epilepsy have seizure alert dog that they can tell them and give them a sign that a seizures coming about, but every single blessed. This is one of those support most of the work by doing this that medical dog and we talked about them.

The.pneumonic is for ordering EEG so on and EEG is the way you determine if a child with a metallic that had its arrhythmia, which is what I did earlier and on and then you know want to get that child in the pediatric epilepsy nausea so a neurologist and neurologist because because the but as you can start with a neurologist. I guess first contact at the miracle, and we will help them get the highest and best level Possible because I I would much rather if it were your child or my child. We would rather start with a high level of care and yes is the right diagnosis and then if it is something that led catastrophic than they can always refer them to a general neurologist for treatment, but on in my experience watching children over and over coming to us that are misdiagnosed or don't get the correct diagnosis until years down the line when devastation is happen to the brain or the epilepsy is more into the worst form about what the issue is not acceptable right and it's it's a wonderful thing that we have people like you… Can help people that have epilepsy because I don't know anyone that's epilepsy may be people who see out there don't know that there's these resources and people that are willing to help. For example, I wanted to talk about the foundation I wanted and I mean and but look into going to a short break. When we come back. I wanted to talk about. Maybe ovation from Mickey's miracles in account healthcare in our country to see how we can work together and try to help those that are dealing with this disease that I didn't even know how to stick my ticket right there. It is scary to look at somebody that's having a seizure, especially if you don't know what it is. It's great that were bringing more awareness to this is condition that people deal with that. There is no cure for four and it's something that we all can get together and help one another.

I love the idea.

It's a great idea if I commend you for getting a raise awareness of the court by way will be read back what talk to Krista Grayson about at the lengthy and having faith.

I may be cattle and this is the key here wife can bring many difficult situations, domestic violence, addictions, poverty and even sexual abuse by your loved ones.

The issue is not stay there, but to overcome all obstacles been shouldered with the love of God, your husband and your family. You can succeed. Love is the answer.

God is the key word reveals baby combos life, a warrior who didn't give up and achieve the dream of her life.

You can get to know more about her at her story on God is the key word.com or buying her book on Amazon.com where back. Thanks for being with us. I may need to have a will and this is the care you can listen to the flight every Saturday at 1 PM Eastern on your radio on our ethics here and on social media also available. Also, as a video poker through iTunes and just look for the cure would love to have your feedback on our show. Please visit them. His purpose.co and feel of the service. Thank you that was dance monkey by tones and I will get. He says that every time and he likes our style.

Sometimes we do make him want to cry.

And now he begs us to see as danced as well. My time Jesus did say the courageous and good cheer. That is just me and not that I thought this and everything else. I can imagine God being cool like that. Trying to cheer us up for joined by Chris decreased the founder of Mickey's miracles fighting epilepsy so Christie I know that even though you went through all those hard times and all those miracles. I'm sure there is catching you up left and right just like that person that came to you and tell you to the kidneys before you actually received the kidneys and so now that you let music does it for me. Let's talk about your position. Christine, you have a position for Mickey's miracle and the pediatric healthcare in our country. I know that there are many states that have special programs to give and teach child care even with people who don't have medical insurance. What support do you need to see that they can take shape.

Unfortunately, lack of awareness that my experience when I do the legislator is shocked that that we are really behind the time with taking care of people and children living with epilepsy. We are blessed that the California state legislature dedicated Mickey's birthday at California pediatric epilepsy day and last year and October 20 thick and so in our conversation with state and defendant defendant in a simple committee in California you doing so much so that when we told them the barrier security family are there is law guidelines that the child who is on medical in California must be on three antiseizure medications to receive coverage when we think a child like that and we can send you a pediatric epilepsy collagen to correctly diagnosis them.

They get them down to one or maybe no and take your medications and in seizure freedom family then loses their medical coverage for them to go through a few boxes to get it back makes no sense whatsoever.

Like many other things as this place and I totally agree with you are thin and in addition you have insurance companies. In my opinion practicing medicine without a license. After telling the doctor by learn antiseizure medication isn't even on the guideline for that particular disease drug first before they can get on to a the proper medicine not acceptable now because in the Diana exactly and so I legislator offered to time and have an informational hearing in California. We'd like to come to an and and and speak with them and bringing awareness legislature. I'm actually here in Dallas. We plan on doing out there and if we could meet up across the country. There are three is some noise and some great things that have happened across the country. Here in Texas. Dave created a law family law that makes groups that have anybody in with the they need to teach seizure seizure awareness and how you emergency response. So how school and everybody administration handle a child when they do have an epileptic seizure. So we need is awareness. We need platforms like this to share this when people hear how devastating epilepsy is and how it affects so many people. Amen that if you have five sonic clonic seizures in one year.

You have a 15 fold chance of dying in your sleep well when people find it easier to take 30 shocked and so awareness I believe will lend itself to the log change. In addition, I think it all up have money coming into funding for research and we can do that and we can find a cure to save the safe life will be wonderful. Thank God for Michaela because look at the wonderful mother. She has so so you know, God has his purpose in his plan, and you agree part of the so what's next for you and Mickey's miracles. Next week we are having our inaugural Kauai and celebrity poker tournament in Newport Beach, California, and to be an amazing event that we've been preparing for nine months. So after that I might after a pop to Robert Morris just wrote a book called take the day off. I highly recommend this article and how important it is and have a conversation with the big man up there so that's what I intend to do.

I would like to take some time this winter just to be in silence and really God what he wants me to do because we have a lot of things that we can do and opportunities from podcasts to writing. I would like to see. Like I said during this awareness through California taxpayers in the bad state legislatures in 2020. We are working on a documentary where we share the story of five families in the different stages of pediatric epilepsy and were looking for support to allow that documentary to come. Life and to premier.documentary next year's like to expand our reach were helping babies now through the organization.

I started called Mickey's miracles. We have babies all over the world acceptable for hospitals across the United States. And so I've been invited to meet more heads of these sent centers. These are the four centers across the country so that we can know the process for each Children's Hospital and when we do have a child and not the that has epilepsy reaches out to us will be able to urgently get them into that center herself.

I have a lot of visions to do a lot of things but I'd like to see kind of way. God wants to have and have plan from the mother of three beautiful babies and a wife. I want to make sure that I give all the attention I can to them and to I think that the most important job for me is that raise three loving and mankind children so I this work is really taking some time away from them and I want to make sure that I find not right balance now. I mean, you'd be so amazed of the abilities that we have. Once we leave ourselves open to God's plan and year-to-year evidence of thank you so much Christie for being with us.

Your work is so very important.

And please, and for those listeners.

Let us know how we can help the costs. We know that if they go to Mickey miracle.org and reach out to were happy to support anybody to have at what the and in addition for anybody who likely contributed everything would be going directly to our families in need would be very much appreciated.

Things you and thank you to our audio engineer Jasper for being with us today and again for more information.

Christie Grayson homework please go to Nikki's miracles that Orrick and I see KIES Mickey's miracles thought Orrick. That's pretty loving God. I pray that you will comfort me in my suffering lend skill to the hands of my healers and blessed the means used for my cure.

Give me such confidence in the power of your grace even when I'm afraid I may put my whole trust in you to our Savior Jesus Christ. Amen.

And this is a prayer for a friend that is in pain or sick Lord Gilbert speaks promises of healing and restoration, and I think you for the miracles he still performed today. Today I clean those promises have for my friend. I believe in the healing power of faith and prayer, and I asked to begin your mighty work in the life of my friend, please reach down and surround my friend with supernatural peace and strength and keep the faith to believe that all things are possible to heal protect her from Satan's lies and discouragement and that her miraculous healing begin. Amen Christopher. They were for care until next week. My