Sunday, January 12, 2014

My Struggle, My Pain, My Fears


When I was pregnant with my third child, I had the same thoughts as most of you~ it doesn't matter if it's a girl or boy, just as long as it's healthy. I was thrilled to find out it was a girl, especially after two boys. And I was even more thrilled to see a healthy baby arrive. We were blessed...three healthy kids! 

Five years later on the anniversary of the day of her birth, I honestly thought we were going to say goodbye to her. She had a seizure that morning. Not your typical type of seizure, I had no idea what was going on...she went from a confused state to a completely unresponsive state within minutes. It was the worst 10 minutes of my life...holding her lifeless body waiting for the ambulance to arrive. We left the ER that day thankful she was ok but with no answers. It took three months of hard work on my part to get her an EEG and with that came confirmation that it was a seizure and they gave us a diagnosis of a type of epilepsy. They said most children with this only have one seizure and don't need medication. We were happy that with... it sounded like a good and easy diagnosis...no problem. We could handle that. 
At the same time we were dealing with her having issues at school. She was in kindergarden and struggling. We kept hearing she "had trouble focusing" and she was so far behind her peers. Thank goodness my pediatrician encouraged me to have her tested for a learning disability. I admit I was completely shocked when her test came back with so many learning problems for this girl that I considered to be so bright. We were lucky to get her help right away and get her on medication to help her focus at school. But in the back of our minds we felt like the learning issues were due to seizure activity. They reassured us it wasn't related and we accepted that. 

After that, we thought everything was great with her health. She had a wonderful special education teacher at school and she loved her! She was still struggling in school but we were happy with her progress. She still struggles with her behavior (thank goodness for A.D.D. medications) and loses her temper quite easily. 

About 2 months ago she woke up with a strange stutter. It wasn't a normal stutter...it was a "lose your breath and no words come out" type of stutter. It was shocking to hear and frightening. It happened over the weekend and on Monday morning her teacher emailed concerned after hearing it. I called her pediatrician and told her something was off. She said to keep an eye on her and let her know if anything changes. When we saw the Dr that week, I mentioned how odd the stutter was and also told her that Ava had pooped during the night while sleeping that weekend. (Something she had been doing lately at least once a month) My Dr immediately said it sounded like seizure activity. I got her an appointment with her neurologist that next week. I had managed to video Ava while she was trying to talk and showed that to the neurologist. He seemed concerned after seeing that and wanted her to have an overnight video EEG. He mentioned a rare "horrible" form of epilepsy (his words) that we needed to rule out that caused speech issues. 
We went in for her overnight EEG a few days before Thanksgiving...and I'll admit I thought we had over reacted to her speech issues and she most likely wasn't having seizures. I would have known if my daughter was having seizures, right? The on-call neurologist acted the same way and seemed irritated we were there just because of a little stutter. After a miserable night in the hospital (I was miserable....Ava was uncomfortable and not happy...which made me miserable), the irritated neurologist came to our room in the morning and said Ava had some seizure activity while awake but once she feel asleep, her brain was constantly having seizures. She was not sleeping...it appeared that she sleeps but her brain is not resting. They ordered an MRI for the next morning and continued to monitor her that day. Thankfully her MRI was normal and she was put on a anti-seizure medication. Whew...I was relieved!  The MRI was good...so that meant everything was good!  Seizure meds will make it all better and we are good to go. 

The week before Christmas we met with her neurologist just to review everything. I wasn't worried...we already knew it was all good. And boy was I not prepared for that visit. He said what we already knew... she's having seizures at night...MRI was good...she on meds to stop the seizures...and the "horrible" rare epilepsy that causes children to lose their speech and cognitive abilities...we think she might have the early stages of it. WHAT? My face started burning...I turned so red I could feel the heat escaping my skin. I couldn't comprehend anything he was saying. He said he couldn't say for sure if she did or didn't have it. They know so little about it and he just didn't know. If they can stop the seizures, then they can stop the damage. The damage that is irreversible. Most of the children don't regain the speech they have lost or the cognitive ability. I really can't bring myself to write what the damage is if they don't stop the seizures... I just prayed that she didn't have it. 

I was devastated...I didn't want to google it...I knew it would break my heart. But after an hour of being home, I went to my computer. I read about it...and actually felt a little better about it after reading more. But I also felt in my heart she had it. She was such a bright child and I felt something was taking that from her. So many things I read sounded like what we were experiencing with her. I was just happy we had her on medication that was stopping the seizures and more damage.

And 10 days after that appointment, she had another seizure in the middle of the night. (we know this because had another "poop" in the night). I knew then we needed to get serious and see a specialist in this type of epilepsy. Every seizure takes more away from the child. We did notice her speech was affected a small amount by it but not a big change from before. The Dr increased her dose of medication and I started searching for a specialist. I got on forums and Facebook groups for this type of epilepsy... and one name keep appearing as the top Dr in the US that treats this condition. We have an appointment to see him at the end of January in New York. 

Five days ago, she had another seizure during her sleep. It took so much of her speech that I want to cry. I'm honestly heart broken...she can't ask me a question or even tell me something with struggling beyond belief. It's not a stutter anymore...it's a sad struggle with her brain thinking and wanting to say something but somehow it won't let it out. I'm scared...I'm so scared for her! We take our speech for granted...but when it's slowly taken away,  it's terrible. And from a child! A beautiful little seven year old girl! Kids are cruel...how will they treat her? Of course they will make fun of her, no matter how much I want to hope they don't, they will. They will judge her. People will hear her and make judgments about her... and I want to cry and change this for her! I want to make her better!
And with each seizure, she will lose more. Please let this medicine work...please God let this medicine work. 

I'm feeling helpless...but I can do something to help her. I can ask you, my friends, to pray for her. Please pray for my sweet Ava. Please. 





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131 comments:

  1. Continuous prayers from me, my family and church family. I also pray that God will touch your heart and help you through this process now and in the future.

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  2. Prayers sent. My heart breaks for you. Sending Angels to her side.

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  3. Prayers for Ava and for strength for your family...

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  4. Will Pray for your beautiful Daughter and keep all of you in my Prayers!

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  5. I cant imagine the feelings you are experiencing! There is power in prayer, stay strong in your faith.

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  6. I can't even imagine how frustrated and scared you must be for your sweet beautiful girl. Tons of healing prayers headed to your family and sweet ava for some answers and a cure for her.

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  7. Wow! I'm so sorry to hear this. I'm a mom of 2 girls and it breaks my heart! Prayers are coming your way full speed!

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  8. Praying for dear Ava and your family.

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  9. My prayers go out to you and your sweet Ava. God bless her and your family.

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  10. My heart just breaks for you! I will pray and pray for strength, peace and healing for Ava and all of you!

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  11. What an absolutely beautiful girl you have!! My prayers are with you right now!! I hope you find answers and especially a cure for your precious girl!

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  12. My heart hurts for you and your family, prayers going up from TN

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  13. Prayers for you an your family.
    My daughter was diagnosed with cancer at the age of 4, so I know your pain. Praying that the medication works and your child is healed.

    Blessings~Kate
    316Photos

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  14. Prayers already on their way up!

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  15. Praying lots and lots of prayers for you all!!!! <3

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  16. Prayers going up right now and will continue to do so.

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  17. My heart is breaking for you right now. Praying for your sweet girl & family!

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  18. Thinking many healthy, healing thoughts for your daughter!

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  19. My heart goes out to you as you have been through so much so quickly. Dear friend even though we have never met prayers will be lifted up this evening from my home for your sweet daughter. May God bless your family and bring healing and quick answers for your precious child.

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  20. I'm praying now for your precious little Ava and will continue to pray for her, for the Drs that will be working with her and that the meds work and she has no more seizures! our God is the great physician and by Him all things are possible!

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  21. Marsha, your little girl is in my prayers. She is the same age as my son, and my heart aches with yours! I pray with all my heart the doctors you work with will be able to help, and that you will receive the comfort and strength you need during this time. xo

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  22. I don't know you at all, except that I've recently started following your work on social media. But, my God, I am so compelled to say something about this... When there are just no words.

    As a mother, you know just what it takes to bring a child into this world. You worry, you watch what you eat, you follow them around making sure they don't fall or hurt themselves, you do all the right things so that this part of your heart walking around outside your body stays safe and healthy.

    But then, to have that taken away, literally while you're sleeping, thinking all is well... Reading this, the devastation and heartbreak I felt for you and for your beautiful daughter, I can't explain. I felt it in my very soul. I cannot even BEGIN to fathom how you are feeling.

    Thank you for sharing something that is so raw and painful, and I will be praying every single day that the answers are found in New York, and that your beautiful girl will not lose any more of herself. I will also pray for your strength as you go through this.

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  23. I am so sorry this is happening but thankful you have an appointment with the top doctor. I will be praying for Ava and your family. Trust in God as he has a plan for you and her, we don't know or understand at this time but there is a purpose, it is unfortunate it seems at the expense of your child. I know your heart is broken and you are so scared for her and yes people can and will be cruel but you must remember you were chosen to be her Mother, you have everything you need to help AVA live a full and productive life and you will. Lord, I come to you humbly and ask you to reach your mighty healing hands down and touch AVA's brain, restore her health and her speech, settle her brain where it can rest and allow her body to heal. Send your mighty angels to surround her, to protect her from all things harmful, guide her doctors to the problem and give them the knowledge to treat AVA. Give her family peace in the knowledge that you are with them and you are there with AVA, that she is not alone when these seizures happen, help her to feel your presence and know she is safe. Lord, you are the ultimate healer we ask for your mercy and intercession Jesus with the father on AVA's behalf. May she hear your sweet and reassuring whispers as she sleeps. Lord give her mother and father reassurance that they are also not alone, guide them where they need to go, open all the doors that need to be opened to help little Ava, provide for them emotionally, financially and physically during this time. Amen

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  24. oh my goodness. we will be praying for Ava. I am so sorry to hear you are walking through this and wil pray for clarity, wisdom, and healing for your family and for your little girl. As a mother myself I can't imagine what you are going through and how scary it must be. Trust Him in all things, He is the one who can help!

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  25. Prayers for your dear sweet daughter and your family. I can't imagine what you all are going through. So so sad. Deuteronomy 31:6

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  26. Many prayers for you and your sweet Ava!
    Wish you all the best at your Doctor's visit in a couple of weeks!

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  27. Wow. I have four children - 3 boys and 1 princess. I cannot even imagine. I am praying for your precious Ava, for you, and your family. Specifically, that Ava will not have another seizure before your appt. in New York, that the specialist you will see will have an aggressive plan of action, and for a miraculous healing. Although most children don't regain some of their lost speech, etc we know that God is bigger. I'm praying for Ava's COMPLETE healing. And if medication is needed, I pray that they'll determine the exact mediation and dosage needed. Praying for your peace. Usually, us mommas don't do so good under stress and lack of sleep. I imagine you don't sleep well, but I'm praying that God will give you the rest you so desperately need. And I'm praying that you will be surrounded by friends that can help you with the daily needs of your family and to be a great support for you. Hugs and prayers from Texas...

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  28. My thoughts and prayers are with you now!! God, I pray the you will heal Ava from her health issues and completely heal her body and mind. I pray that you will richly bless her, her family, their medical staff and any individual involved with her for her lifetime. I pray that she have have a full, healthy and happy life. Please show them the way, Father, to the right medication, answers & for helping Ava to be the amazing miracle you have given us. Thank you, Father, for Ava! We are so blessed. Amen

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  29. Oh my heart is just breaking for you and for Ava. I will put Ava on my daily prayer list, and I will pray for you as well. ♥ Please keep us updated.

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  30. Please see get a couple of different opinions from a couple of different naturopathic doctors. Diet can lower the seizure threshold

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  31. I can't even begin to imagine your situation, even though you wrote about it so wonderfully. I will keep you in my prayers. I will, I will.

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  32. Huge giant prayers for your Ava...for you...for your family...and for the doctors treating her. Prayers, hugs, love being sent your way.

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  33. Marsha, As a mother my heart hurts for you and your beautiful little Ava. I cannot imagine the struggle that this has been for you and little Ava. What a beautiful girl she is. I am praying for her, and for you and your family that answers will be found and miracles will happen. I have some sweet friends with varying forms of epilepsy, and no matter the form it takes, it is so sad. I know as a mother you are probably searching for anything to help her. I don't want to be forward, but feel compelled to ask if you are open or have had any experience using essential oils as complimentary treatment with her medications. I have seen them work wonders with several people who are suffering with different forms of epilepsy. https://aromaticscience.com/?s=epilepsy has research articles about them. I have personally seen the use of frankincense oil be effective, and the there are others that are as well. I think it may be worth discussing with the specialist......I pray that you will find something to help your sweet girl.

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  34. Praying for your baby girl. God can do anything, just have Faith. In Jesus Name, Amen!

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  35. I am so sorry to hear about Ava. My prayers are with you. I hope god will keep you strong and her growing mind will heal. My prayers and love are with you. - Shelby

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  36. Ava and your entire family are all in my prayers. My heart is breaking for you, my love, but know that you all are in my thoughts and prayers.

    peace & light-

    Sonya

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  37. We're praying that God may grant you and the doctors wisdom on how to help Ava. Praying for her healing! My seven year old was diagnosed with autism a few years ago and I feel your pain. It is devastating to see your baby struggle just to communicate, in school, relating to others, and having EGGs. As a mom, we fight these battles on our knees. By the way, Ava is so beautiful. May God bless your family.

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  38. Praying for you and your precious Ava!

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  39. I'm so sorry you are having to go through this. Thank you for sharing. We will pray for her, and have faith in Heavenly Father that He will bless your family with the strength and comfort and guidance that you need.

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  40. Trying to type through my tear-filled eyes….to let you know how sorry I am! You are doing all that you can do right now as far as getting her the treatment and appt.'s that she needs. Next, the best thing you can do is pray, pray pray. And ask for prayers. Don't stop asking others to pray- the power of prayer is amazing. Let us know specifically how we can pray and what you need. Let go of your worries and fears and trust in God. I'm stopping to pray right now and pray that AMAZINGLY wonderful things will start to happen with your sweet Ava and in the lives of your family. Blessings from Siciy, Italy!!!

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  41. Father, I pray for Ava right this minute. Do a mighty work in her body. Do such a miracle in her and her family that the only answer can be our Amazing God has total control!!! Thank you for hearing my cry to you on behalf of Ava. Give a peace to her family and wrap your arms around them so tight that they feel safe. I boldly ask, while believing you hear us, that there will be no more seizures....none!!!! Restore her, Lord! Thanks for loving her and thanks that you are still able to do miracles and we ask for one this evening.....

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  42. I just read your post and I will pray for your daughter! I am so sorry for anyone and let alone a child to have to experience this. Hugs and prayers to you and your family! ♡♥

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  43. I just read your post. I am so sorry that your daughter is going through this. I will pray for you and your family!!! I couldn't imagine, Hugs and prayers to you and your family. ♡♥♡♥

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  44. Bless you, and may the Lord have his arms around you and yours...

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  45. I am SO heartbroken by this! If you can take the time to watch-the secret- i swear by it n i hope you will open your mind to it. prayers for the best n your sweet little one

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  46. Prayers going out to your family! I cant imagine what you are going through as a mother and it took so much courage to write this all out on here! Please keep us updated and let us know if you guys need anything at all.-Warmly:), The Aubrey Family

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  47. I prayed for you and your sweet daughter.

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  48. May God grant you beautiful little girl a speedy recovery. I hope you will be able to look back at this stage in life with a sigh of relief that a solution was found.

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  49. I am praying for your family. My heart is breaking too. What a sweet little girl and I can't imagine her frustration and yours. Just know you are surrounded by love and support.

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  50. I don't even know you but I could not stop my tears as I read your story. From one mother to another you and your beautiful daughter and the rest of your family will be in my thoughts and prayers for as long as you need them to be. X

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  51. I saw this on a friends facebook and couldn't read without passing on how much I am hoping that you can get your little girl the help she needs. Try not to expect the worse from other children, yes some will be cruel but thankfully a lot of young ones are far more accepting than you'd imagine. Stay strong and know that although you don't know me I will be keeping you in my thoughts xxx

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  52. oh marsha...i had no idea ya'll were dealing with all this. when i'd see your instagrams i still had no idea. gosh i can't even imagine your heart through all this.
    i will join you in praying this medicine works...i'll also pray this just goes away...i pray that there are no more seizures...i pray the doctors have wisdom and you guys have discernment.... that ava is a beautiful little girl and always has a light in her eye. whenever something like this happens theres something in my heart that reminds me of the following...YOU were chosen to be AVA"s mom. the perfect mom for her. not perfect, but perfectly FOR her. i pray you have peace that passes all understanding. i'm going to inbox my cell if there's ever a day i can help you do anything at all... much love & prayers...and thank you for sharing.

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  53. My heart is hurting with yours! We will pray for Ava! Stay strong and push for the Dr to get things done.

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  54. Dear Marsha, I do not know you personally, but I do know the mother's love for her children! Will be praying for your family!

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  55. http://www.cnn.com/2013/08/07/health/charlotte-child-medical-marijuana/

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  56. I am praying for your sweet Ava,and for your Mama heart that aches for your child. Asking God for healing and restoration, He is bigger than all. I am so sorry you are going through this.

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  57. I cannot even imagine how hard this is! I'm keeping your sweet little love and all of you in my prayers, and I will light a candle for her when I go to church on Sunday. I'm in NY, so if there is anything you or your family need while you are here, please do not hesitate to message me and let me know.

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  58. Praying for your family.

    Your story sounds eerily familiar to ours. I awoke one day to our son having having a seizurw ygat turned out lasting almost 30 mins. Hundreds of seizures, piles of meds, hospital stats, speci ex meetings, and thousands of unanswered questions became our life

    Our guy was given the diagnosis of Doose Syndrome. It is a very rare form of epilepsy similiar to LG.

    If you wish to read some of our journey:
    All4jake@blogspot.com

    Praying for ypur little princess. Epilepsy sucks and us surely NOT what everyone assumes it is.

    Hugs~Christine.

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  59. Hi... your story breaks my heart. I am friends with the beautiful mrs paige and it was on my heart to share this. I know that our GOD is a healing loving GOD. There is a ministry in the little town Thomaston South Georgia called BE IN HEALTH. I along with many many believers have been healed of many diseases. Please let me know if you need more info. You can Google be in Health or iamchanged.com for video testimonies of healings. I believe your precious daughter can be healed of this. Praying for you all. Blessings, Amber :)

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  60. I have no words...but sending a bunch of hugs. Please update as soon as you can.

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  61. Praying through my tears! Big far away hug from a stranger. Prayers for you and your family and the doctors.
    Carlee

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  62. My heart goes out to you and to her. She is stronger than you know, you are stronger than you can possibly imagine. You are her voice and she will be heard. We don't always need words to have a voice though and I pray she finds hers in other mediums if speech is not in Gods plan. I realize this doesn't help, how could it, ultimately it's just not fair. As a mother my heart aches for you and for her and you will be in my prayers.

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  63. My thoughts and prayers are with you and your family. I pray that your beautiful daughter gets the help that she needs. Good Bless!

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  64. Marcia, Ava and your family have my prayers. She is strong, and God is merciful. I have faith the wrongs will be righted.

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  65. I am a new reader - saw a link to your story on Facebook - and I want you to know that I am praying for your beautiful girl! I hope the doctor who specializes in this area can give you some answers, and her some relief. I am so sorry you are going through this. (((HUGS)))

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  66. Praying for your sweet daughter! You have to be her advocate! If you don't like what the doctors say, get another opinion! My son has ADHD and is on the Autism spectrum. In his short 9 years he has almost died 3 times! All accidents, probably due to his ADHD. Prayers for you!

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  67. Praying that God gives Ava's doctors the wisdom to help her! Prayers for you, your family and sweet little Ava.

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  68. Praying for your sweet little girl and your entire family , for complete healing of this beautiful little girl!!!!!

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  69. Oh my gosh, I am literally crying. Huge prayers. I will send this to my prayer groups as well. I am so sorry for your family. What a huge, life changing event. Please elt us know how the progress goes.

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  70. Came over from Paige's Instagram and just wanted you to know that I will pray for your beautiful family. May God give Ava peace while she endures this, I pray for her to feel understood and comforted. And most of all, I pray for your heart, as I know it is breaking. May God's strength be made perfect in your weakness. I'm so sorry that you are all going through this.

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  71. I cannot imagine your heart ache! I will be praying for everyone involved!

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  72. I'm so sorry to read this. Our thoughts and prayers are with you all. Hugs - Megan

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  73. This post broke my heart. I'm not going to say I know how you feel, or even much about Epilepsy but I know what it's like to be a mom feeling helpless about her child's health. I remember clearly the night I got on my knees and gave it all over to the Lord. I just finished praying for you and your daughter. I'm believing that the Lord has a perfect plan in this trial that you are going through.

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  74. Marsha, you and your sweet girl are in my prayers! praying that God will give the doctors the wisdom to treat Ava with the best possible outcome. praying for strength for you and your family and for healing for your precious daughter.

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  75. I'm stopping and praying for answers and divine healing now. I'm praying for a peace beyond understanding for you and your family and wisdom for every doctor that comes in your path. May His hands work through the doctors and may you feel his love and comfort from those he surrounds you with. I will pray this out loud in Jesus MIGHTY name.

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  76. Prayer I am reading your blog for the first time today because of Paige knudson. And I just wanted you to gain some strength in the fact that people you don't even know are lifting her and your whole family up in prayer!

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  77. I'm so sorry…and am and will be praying. Not just for your precious girl, but for you, and the family too. May the peace of Christ be so real, and the Holy Spirit's healing be so evident!

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  78. Hi Marsha - I'm not a super regular reader of your blog (it's great, I should be!) but saw this post on fb and knew I needed to come and read it. UH! I'm a mom as well and I just feel for you and your family for what you are going through. It just breaks my heart. I had a scare with my 7 year old daughter this past Thanksgiving when he found bumps under her arm.. My heart sank, I had the sickest feeling in my stomach and it was honestly the worst day of my life. I couldn't concentrate until we got test results and spoke to the doctor. While we were waiting in the hospital for the results,, the orderly came with discharge papers and said the doctor would call us if anything was wrong. I thought to myself, is he kidding? There was no way anyone was getting me to leave until I got the results and spoke to the doctor in person. I stuck to my guns and started searching the hallways for the doctor. I found her and she had no idea that the orderly told us to leave. She was also a mom and completely understanding and the end result was that everything was ok. Thank goodness but I still feel like I have to watch over her - more so than usual. I'm not sure where your doctor is in NY but I am in Riverdale - 15 minutes from Manhattan. Feel free to reach out if there is anything I can do. I'll be thinking of you and your family.

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  79. I feel so angry but don't know where to put it!!
    I can see she is super bright and super beautiful...a real treasure!!!
    I'm so sorry and no doubt will PRAY to our Healer for Ava!!! No disease is stronger than HIM.
    Hugs to you!!!

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  80. I'm so very heart broken for you. I will pray over y'all and especially for your daughter and her physicians. I do not dare to know what you're going thru. However I have two children at the mayo clinic with very rare and random chronic illness. I am familiar w the gut check journey you're on and I promise to call your name in prayer. Standing with you momma!

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  81. Continuous prayers from Mississippi for your beautiful Ava, you and the family. Our God is an Awesome God.

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  82. Hi Savvy
    I am so sorry to hear about your daughter! I pray that she gets better soon.
    I wanted to reach out to you because I photographed an event last year for an epilepsy foundation. It was about a special diet called Ketogenic diet that cleared up all the signs of epilepsy. One of my girl scouts did this diet and it ended up clearing her of all her epilepsy symptoms with no drugs. I hope that maybe it will help you and your daughter. more info here. http://www.charliefoundation.org/

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  83. Praying for your sweet girl.

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  84. I read this yesterday and have not got it off my mind. Our family is prayer for your little princess and you and your family. I could not imagine, and my heart breaks that you have to experience this. She is so beautiful!!

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  85. Another stranger popping in to tell you that I have prayed right here in my kitchen for your family and your sweet Ava.

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  86. Praying that the Lord will touch Ava & heal her entire body & give her her speech back!

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  87. My heart goes out to you, I truly do. Your situation sounds nearly identical to what you are going through. We enter the hospital tomorrow morning for more long-term EEG testing...probably a few days. My daughter will be 7 on the 18th. Please, look me up on Facebook and send me a message so that we can support each other. Know that you are NOT alone in your feelings, heartbreak or struggles. Much love. Connie Morris Reese

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  88. Thank you for reaching out to all of us who have been touched by you, the Savvy Lady! Ava is a beautiful, luminescent darling. I will pray for healing for her body and spirit. It is so good that you are pursuing answers. Sending you a very warm embrace over the web. xoxo

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  89. praying for your family.

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  90. Praying Praying and more prayers to you and your baby girl. ::HUGS::

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  91. I have friends that have gone thru something similar with their youngest child. I am sorry. I am sooo happy you have figured it out earlier rather than later. I can't wait to meet you in Florida and give you a big hug. Hang in there Mama.

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  92. I'm a Sister of St. Francis of Perpetual Adoration (www.ssfpa.org). My sister sent me this blog post and asked me to pray for your little girl. Please know that I and all the Sisters will be praying for Ava. God bless you.

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  93. Praying for your sweet Ava!!

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  94. Praying for you and your beautiful Ava.

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  95. Praying. My son has had seizures since he was 2 1/2. Hope for answers for you and controled seizures.

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  96. PRAYERS ARE BEING SENT YOUR WAY FOR AVA AND FAMILY FROM RICKMAN TENNESSEE

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  97. My heart aches after reading what you are going through. Praying and sending hugs. xoxo

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  98. Your story is breaking my heart. I am so sorry you and your family have to go through something like this. And your poor sweet little girl. <3 <3 I have 3 babies, a 9 year old daughter, a 6 year old daughter and a 2 year old son. I can't imagine watching any of them suffer through something like this. My prayers are with you, with your daughter.

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  99. I am praying for your beautiful daughter and also for you and your family. Stay strong mommy.

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  100. dearest marsha~ please know that you, little ava and your family are in my heart and prayers. i just don't have the words, i wish i could be there to comfort and give a helping hand. please let me know if there is anything at all i can do to help...

    much love...
    kristin

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  101. Praying for you and Ava. Our God is so good and so healing.

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  102. And pray we will. Thank you for reaching out. Your village is here for you, and God will give you strength.

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  103. I am so sorry and lost for words but sending your family prayers from our family.

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  104. Praying in Indiana!

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  105. Prayers from the UK. I know how much they helped me recently.don't ever give up hope. I had an inoperable brain tumour a few months ago. I found the right surgeon, who miraculously removed 100% off it. My tongue muscle was paralysed as a result, but it was a small price to pay for the gift of life. Much love and prayers x Karen

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  106. Your words really hit home with me, and I really felt the words coming from your heart. As a mother, it is very hard to understand why a child has to experience this. I will be praying for your family and sweet girl. God will provide you the strength you need during your weakest moments. Keep surrounding her with all of your love. I am glad you got an appointment with that doctor, and I am praying he provides you with some answers. I am so sorry you are going through this, as well as Ava.

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  107. Heather sent me a note saying I needed to come and read this and I just wanted to let you know that prayers don't even have be requested. Of course I will and often! I know my health hasn't been the best and that's prevented us from meeting up - but we are so close. If there's ever a day you want to drop by and order lunch in, just to talk to someone who isn't involved and let it all out - or talk about anything but - please know I would love to meet and do that. She's a beautiful little girl and I wish your family all the best in New York, and here at home. Much love! -R

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  108. You have my prayers, too.

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  109. Praying for your sweet Ava and shared on my Facebook page for others to pray also.

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  110. I'm lifting up Ava in prayer:) I hope the doctor at the appointment helps her immensely. ~ Judy

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  111. Praying for God's abundant grace on you and your sweet family.

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  112. Sending prayers for Ava to our Father, our Healer, our Provider....

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  113. I will be praying for your sweet Ava.

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  114. I wish I could reach through this screen and give you a hug! I will keep you all in my prayers as a mother of a child that has had seizures and is currently on meds to stop them......there are just no words.....just lots of hugs! Prayers of peace, patience, and STRENGTH for you, your family, and sweet girl Ava.

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  115. I know you have gotten hundreds of comments, you message touched my heart, i will be praying for your little ava,i will be praying that God strengthen you and comfort you on this journey. I am sorry. I pray God's hand over your little ava. Sending you a big hug from one mom to another.

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  116. just saw this on Facebook. have you heard of it? CBD for epilepsy
    http://www.youtube.com/watch?v=S9qkYLtAhSQ
    praying for your little girl!

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  117. I am so very sorry to hear about what your sweet daughter is facing. I'm praying for recovery and strength in the waiting!

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  118. I happened upon your article while on Facebook. I am so very sorry to hear of your sweet girl's struggles. She, and the rest of your family, will surely be in my prayers. I also wanted to add that I was recently reading up on the Ketogenic diet. From what I read, this is a diet that is often recommended for adults and especially children with epilepsy. From the stats I read, while on this diet seizures decreased dramatically for many. I really don't know much about this, and maybe you have already heard of it, but I thought I'd throw it out there. It might be something to consider on top of the treatment she is and will receive. Praying for healing for Ava!

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  119. I've got nothing brilliant to add here, I just want to give you a big hug. One more prayer sent your way. xo

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  120. Praying for you both right now

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  121. You are welcome to email me anytime. My daughter has Benign Rolandic Epilepsy. I have been relentless in my research and will forward some of my findings here. This is copied and pasted from a few posts so I apologize if it's a little disjointed.

    Dr. Jody Caldwell says the idea that Cara (5) suddenly started having seizures out of the blue is indicative of a break in the sheath of a connection in her brain. Because the sheaths next to the break are thin, the spark spreads. The treatment is DHA in daily large doses & also added to diet in its natural form as much as possible. After one month, it should be in adequate numbers in her blood. By three months, it will be in her brain. We will start seeing her seizures affecting less areas when she has them (not her eyes AND her breathing AND her hands.... etc). By six months she anticipates the sheaths to be healed and the seizures to stop all together.

    In the mean time, she's investigating WHY they were fragile to begin with. She's running a 96 food sensitivity panel on her, looking for food intolerances producing minor reactions in her system. We'll cut out the foods that are upsetting her and fill her with foods that heal.

    Something like this and flax seed & salmon as much as possible:
    http://www.amazon.com/Nordic-Naturals-ProDHA-1000-120/dp/B0073M4VIA/ref=sr_1_2?ie=UTF8&qid=1390336881&sr=8-2&keywords=pro+dha+nordic+naturals

    We also did this test on her and have her on supplements to correct the issues: http://www.spectracell.com/clinicians/products/micronutrient-testing-comprehensive-nutritional-panel/

    You need to know if she has an MTHFR genetic mutation. http://www.ncbi.nlm.nih.gov/pubmed/21787169
    "The well-studied C677T variant in the methylenetetrahydrofolate reductase (MTHFR) enzyme is a biologically plausible genetic risk factor for seizures or epilepsy."

    My daughter has the A1298C single mutation which can be a contributing factor to her seizures.

    Doctors have noticed that people with deficiencies in certain vitamins & minerals frequently suffer from seizures. Here are the results of my child's blood test. Good news or bad, my daughter is highly deficient in those areas. At LEAST he's not looking at her results also telling me idiopathic epilepsy. We are diligently working to correct those deficiencies.

    Maybe it will help you too:

    Her results...

    Nutrients in the borderline section:
    Zinc, Choline, B 3, Vitamin C

    Nutrients in which she is deficient:
    B 12 (she is at 14, anything 14 or under is deficient)
    D 3 (she is a 41, below 50 is deficient)
    K 2 (she is at 23, below 30 is deficient)
    Calcium (she is at 36, below 38 is deficient)
    Glutathione (she is at 31, below 42 is deficient) ** THIS IS THE BIG ONE. She is low in this because she suffers from allergies and asthma. She depletes this because her body is constantly fighting. Of the last 4,000 patients that took this blood test, Cara scored the lowest).

    Glutathione is a vital brain antioxidant.

    Total Antioxidant Function (she is at 38, below 40 is deficient).

    My doctor for her nutrition is Dr. Ron Grabowski in Houston. Dr. Caldwell is in Conroe.

    You can contact me anytime if you'd like to talk. I'm in a epilepsy support group on Facebook which helps tremendously. https://www.facebook.com/groups/111573588885360/

    One topic we discussed recently is what is in your "emergency bag" - ideas like a blood oxygen monitor, blood glucose test, thermometer, stop watch, journal...

    My email is karen.branch.us@gmail.com.

    Sending prayers...
    -Karen

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  122. My heart is hurting for you and your sweet Ava! Such a beautiful girl! I hope her new meds are helping and that she can find the right specialist. Thoughts are with you!

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  123. Prayers for Ava and prayers for you! Our son has a form of epilepsy. So many of your fears have also been mine, and my heart aches that another precious child is facing an unknown future. Thankfully, we can trust the One who made our bodies so wonderfully. Praying He leads you to the treatment and answers that she needs.

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