I will be honest, I haven’t felt like blogging…..well, actually I have but it would have been so much sadness and negativity that it would have been difficult to type and to read. The past 2 weeks have been SO HARD! I spent the week after Christmas just thinking, pondering, praying, wishing, hoping, longing……grieving in a sense. Here are a few of my thoughts…..more like ramblings from 2017….be thankful I didn’t type ALL of my thoughts…..HA!
Hannah has gotten worse in so many ways; yet, God has been gracious and she has gotten better in other ways. Physically she is failing…..medically speaking she is worse and it breaks my heart to watch her decline. If you don’t know, our doctors strongly suspect that Hannah has Autonomic Dysfunction. Yes, we believe we finally have a name for what has been going on since she got so sick in September 2013 and then how she declined horrifically in March 2014 when PANDAS hit. The theory is something in her brain went haywire and her immune system bottomed out which started in September 2013. She has run a low-grade fever DAILY since then so we are now thinking that was the beginning of the Autonomic Nervous System malfunctioning. Her immune system hit bottom, she has T-cell deficiency (which are your fighter cells) and many of her vaccines she had as a baby she now has no antibodies for in her body. Hence why her immune system is so impaired. Then she got that strep infection in January 2014 and things were “off.” She acted different; her behavior and mood were just not Hannah. We couldn’t keep her well so we took her out of school; we had no choice. Then, March of 2014…..all hell broke loose when she ran 103-105 temperature for 10 days (we believe she had strep and the body eradicated it over that 10 days, as the hospital in Atlanta never swabbed her and said it was a “viral infection”). This is when the seizures and syncope started; along with horrific rage and aggression, OCD, tics, anxiety, depression and insomnia. Can you say “hello PANDAS, we hate you!”
It is hard to believe that was almost 4 years ago when Hannah’s and our lives changed so drastically. Dennis was deleting old videos off his phone the other night and I heard it…..he was watching one of the MANY rage episodes we had recorded over the past 4 years and I got tears in my eyes and said, “cut it off, I can’t even listen to it.” It literally rips your heart out to hear much less watch. But, it hit me…….behaviorally and emotionally she is so much better and I am rejoicing in that fact. She is so loving right now……she hugs me and kisses me all the time; tells me I am her best friend and she loves me “so much all my heart” and that is a far departure from where we were this time last year. I have 4 things to thank for this change…..
Last January she was having horrific nausea (another symptom of Autonomic Dysfunction that I didn’t know until November). In fact, if you google the symptoms for Autonomic Dysfunction, Hannah has more than 90% of them……it is crazy! Anyway, our Pediatrician gave her Zofran for her nausea back in January 2017 and we noticed her aggression/rage GONE! What we figured out is that Zofran is in a class of medications called serotonin 5-HT3 receptor antagonists. It works by blocking the action of serotonin. DING, DING, DING! All the drugs our first Neurologist and Psychiatrist wanted to treat her with were drugs that produced serotonin not blocked it. Those drugs like Zoloft, Prozac, Lamictal, Risperdone all made her worse and she had adverse reactions. Adding Zofran 3 times per day not only took care of her nausea but also completely stopped the rage and aggression! Then, another friend of mine introduced me to CBD/Hemp oil…..yes, marijuana in an oil form. Her seizures were off the chain….having them many times a week and I had to do something so I tried it. Hannah has been seizure free since March 2017! She had 2 grand mal seizures in March when she contracted strep (which we now know she is a strep carrier) and ran 104 fever. But, once the strep was eradicated she has been seizure free……HUGE MIRACLE! Then in May, 2017 my dear friends John and Kerri Soud introduced me to Vasayo. They have a product that literally has cured Hannah of her insomnia called SLEEP. It has natural ingredients of GABA, Melatonin and NAC in it and from the very first night we used it until now she is falling asleep within 15 minutes each night and sleeping 11-13 hours STRAIGHT! I call it my “miracle in a bottle” and I am forever indebted to John, Kerri and Vasayo for this miracle. So, those 3 things changed our life last year…..the 4th “thing” isn’t a thing it is and will always be the LORD! People praying for us, loving us and supporting us. The doctors we have on board with us working with us and for us, FINALLY (for the record though our Pediatrician has been with us, loved us, worked with us, prayed with us and done everything in her power to help us for the past 12-1/2 years), medications and supplements provided, answers to questions, grace, mercy, strength…..all glory goes to God.
So, looking back 2017 had answers and honestly that is all I have ever wanted. Walking in the dark, not understanding why or having explanations for health issues is so very hard especially when it comes to your child. So, for that fact…..for the answers and the miracles we have had this past year I am so grateful. The question I have been asked by those who know about the Autonomic Dysfunction is how do you fix it? Well, unfortunately, you can’t. You treat the symptoms….but, they are difficult to treat as it literally affects your entire body….brain, heart, GI tract, bladder and yes, those have been affected in Hannah. It can affect other things as well but the ones I listed are the ones we are dealing with right now. We are working on treating the symptoms, but finding medications and things that work often takes time. My greatest concern right now is her heart; being that it is so compromised anyway. Her GI tract/bladder issues are absolutely horrible and for years we thought she was “withholding” but now we find out her brain doesn’t tell her nervous system to “let it go” and so she can’t……causing her significant pain, frustration, bloating and swelling from fluid retention. Not to give too much information but Hannah can go literally 15-17 hours without peeing! It is awful and the pain is excruciating for her.
I am thankful today. Thankful that I can be home with Hannah. Thankful that I can just be a mom to her and the days she needs me I am here and I have learned that the house cleaning, laundry, food prep can all wait. I have learned that if I have to it is okay to just sit in her playroom on the floor and “be present.” I am thankful for a husband who works so hard to provide for our needs and some of our wants and that he truly doesn’t care when he comes home if I am still in my pajamas (I try not to be but sometimes life just happens and I end up staying in my pjs). I am thankful that he sees the need for me to get out and go to dinner with friends, get manicures and pedicures, go on a shopping excursion and even the occasional weekend away. I am MOST thankful that he is a wonderful dad who LOVES being with his little girl, even playing Barbie’s if she wants him to.
On a different note, I am thankful for my husband and his sisters Lynda and Donna as I have watched them the past year love on and care for their parents. This has been a very sad, difficult and trying year for the 3 of them, but watching the love and devotion they have for their mom and dad has made my love and admiration for each of them grow. If you would, please remember Dennis’ parents, him, and his sisters and their families in your prayers…..it is a trying time and one that I am not looking forward to when and if it happens to my parents. I am completely in awe of the way all 3 of them (and his sisters husbands) have taken care of their parents. I wish I could help more but my hands are full with Hannah. Caregiving is not for the faint of heart and it is one thing to be a caregiver for your child 24/7 but a whole different ballgame when you become the caregiver for your parents.
So there is that…..an update, year in review (kinda) and now 2018 has begun. I pray each and every one of you has a blessed, happy, healthy and peaceful 2018…..I pray that for all of us!
Until next time!