Where have you been?
I haven’t seen you blog in forever. I get that a lot.
I really haven’t blogged in about a year, that’s basically when my life fell apart.
I have started to write you about this a million times but it was like ripping a page out of my diary that felt all too personal, scary and so very vulnerable. See, it is one thing to talk openly with you about my struggles but it’s a whole different ball game when you discuss your child’s struggles. Am I sharing too much of her personal information? Will she be embarrassed later in life looking back? Is sharing actually going to help anything? These are the questions I have asked myself over and over throughout the past year. It was hard for me to even think about sitting down to blog because this has been the ONLY thing on my mind for the past year and it seemed very unauthentic to try and talk about my workouts or fashion or other life adventures when this is it. This has consumed my life.
I decided I wouldn’t share any of her health struggles until I felt ready. Until she felt ready. And until we had a generalized idea of what the hell is happening to my child. And so today I am ready to share our personal journey through hell. A glimpse into what our life has been like over the past year.
It’s hard to know where to begin, but I will start with 1st grade. Ellie had a terrible experience with a teacher who belittled her in front of her class. (I wrote briefly about that here a while back). I pulled her out of school and home schooled the rest of the year. The following year we got into a university model school where she is in class 3 days a week and homeschooled 2 days a week. The school was/is great and we loved it so much we decided to move about 45 minutes away to be closer. Since Steven and I both work from home, it seemed like an easy decision.
Everything fell beautifully into place. Our house sold quickly, our new house was everything we hoped it to be and we were 10ish minutes from our new school. Once we moved we noticed some extreme behaviors in Ellie (she was 8 at the time). We had concerns that she had ADHD about two years prior but it was discovered she actually has celiac disease. Once we got the nutrition part more regulated some of the ADHD symptoms subsided but didn’t disappear. This behavior was different though. We would find her hiding in her closet, curled up in a ball rocking and crying. She would have extreme anger and outbursts that would make a prison inmate look like a saint. She became violent stabbing herself or me with pencils or throwing chairs at my face during homeschool. She was very violent and very angry. There was no particular trigger and no solution we could find that would calm her down or break these fits of rage. She went from being a highly advanced reader and a straight A student to barely being able to read. Not even able to sound out vowel sounds or blends. Things that came so easy to her before, suddenly were gone. She started talking about wanting to die and taking her own life. She would tell me vividly how she thought she would do that. As if I didn’t have anxiety before, I lost it and had melt downs at this point! How in the world can a precious child want to take her own life? Doesn’t she know how good she has it? No bills, living at home, playing with her friends and dogs…I mean she has it so good I just don’t understand.
She became completely 100% obsessed with food. She woke up begging for food, went through the whole day thinking about food, hiding food to hoard and eat later. She would binge eat and cry because she was still starving. We would eat dinner and she would be starving. There is no control switch for her saying “i am full” or this is “enough.” She has no control over food or anything else in her life. Food is one of the obsessions holding her prisoner.
I would call her psychiatrist and psychologist in tears almost on a weekly basis saying I didn’t know what was going to happen next and I am terrified. Should I take her to the hospital? What will they do to her? How do I handle this? She was diagnosed with PTSD from moving. Really? Moving 45 minutes away caused PTSD? I am not downplaying that diagnosis but what I am saying is that I knew there was way more to this than being homesick. The psychiatrist prescribed Ellie with Clonidine to help her mood swings and behavior. We also started Vayarin (a fish oil Rx to help with the ADHD problems). The pros? I noticed that when we gave her the Clonidine at night and it kicked in, she was way more compliant. The cons? She would absolutely pass out. Like eyes rolled in the back of her head, pass out, no way I am waking up kind of out. The goal was for the medicine to help during the day to even her out with the anger and moods but this didn’t work. It was a temporary bandaid yes, but a long term solution no. After a couple of months, Ellie refused to take the medicine and would have a complete melt down screaming at us telling us “you only want me to take this because i am so angry you want me to sleep!” Well heck yes I wanted you to go to sleep, momma is exhausted with dealing with this all day, I needed a break but no that wasn’t the reason for giving her the medicine obviously. We have heard great things about the vayarin but unfortunately we didn’t ever see a change with her attention or focus. Ellie was and is still 100 mph in every direction and has the focus of a knat. The anger and fits of rage continued. Unable to leave Ellie alone with her sister in fear of her hurting her or even the animals. Ellie was under our supervision at all times, except when we were working or when she was in school the three days a week. School always gave us positive reports and her teachers love her. They say her behavior at school is good and haven’t complained about that which completely baffled me. Her psychiatrist told me that she is doing everything she can to hold in and keep it under control during school and then unleashes the beast at home!
Working and leaving for weddings for the weekend became increasingly difficult. Ellie started having such severe separation anxiety that she would scream and cry. She would cry so hard she wouldn’t be able to breathe. Why in the world at the age of 8 is this happening? Ellie has ALWAYS been Miss Independent so why in the world would she need to cling to me like saran wrap now? Every possible reason entered into my head. Has someone hurt her? Did something happen I don’t know about? I mean our kids stay with family, nothing could have happened. So that was another therapy session and more dollars.
This still continued and with more visits and dollars at the psychiatrist and psychologist and doctors offices they decided maybe Ellie just needed a change of medication. Lets just change it to the Clonidine ER version that way it will be in her system longer throughout the day. We started that medication and within weeks Ellie was having hallucinations and hearing voices. She would come to me sobbing saying she didn’t know how she felt and she doesn’t know why she hears these things. She hears voices in our house and they are coming after her. Just walking our dog she would almost have panic attacks thinking people were watching us and coming to get us. Mind you, we live in the country and there was no one around anywhere close. She became almost handicapped to this fear of people trying to kill her. She couldn’t or wouldn’t go anywhere without me by her side. She had to sleep beside me, walk beside me….I couldn’t even go to the bathroom without her at my side. She was so terrified. I would joke with her that she was trying to get back in the womb because that’s about how close she had to be with me at all times!
She got an ipod for christmas and she became so paranoid that she deleted almost all her apps thinking people were tracking her down through the ipod and coming to get her. The smallest tasks usually cause the biggest fits. Please brush your teeth, clean your room, take a shower, brush your hair. Just those right there make her lose complete control. Just last week she was brushing her hair after the shower and she told me the voices told her to cut her hair. She cut about a foot off underneath her hair. I called her doctor again to talk and let him know I think this medicine is doing more harm then good! We started talking once again about all the symptoms and what is currently happening etc. At this point I am already frustrated because I am tired of my daughter being a test dummy for medicine. He asked me, what I thought, a weird question at the time. Has your daughter had strep throat lately? Well, not that I know of but she did have strep throat every two months for a couple years several years ago before she had her tonsils removed. I hear a big, uh huh. He said I think I know exactly what is going on….. he mentioned something called PANDAS and that we should get further testing to confirm possible diagnosis.
What the hell is PANDAS and why would strep a couple years ago play apart in my child acting like Satan’s spawn? Ironically, I came across a blog from a friend of a friend and it was titled “the silent kidnapping of our daughter.” I started reading the blog post and my eyes grew bigger and bigger. It was every symptom and everything I had been experiencing of the past year! It was like the one piece of the puzzle was missing and that blog was that missing piece. OMG it finally made sense. My daughter has PANDAS. We spoke to her psychiatrist and pediatrician who also said, YES this is it, lets get you in with a specialist who can help you.
So this is where we are currently.
We saw a new psychiatrist this week that has extensive experience in dealing with PANDAS kids. I really like her and I am excited for Ellie to meet her and start working together. Our last psychiatrist was older and Ellie had a difficult time connecting with her so she would shut down and block her out. It became a big chore for us to get there and it almost became not even worth it.
What the heck is PANDAS? “PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) occurs when strep triggers a misdirected immune response results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating, and more. PANDAS Network estimates that PANDAS/PANS affects as many as 1 in 200 children. PANDAS has an encephalitic-like onset. Some childrens’ onsets are clearly debilitating and they become near catatonic and homebound. Other children can function at school and then fall apart at home for hours on end. BUT IT IS CLEAR – THE FORMERLY NORMALLY FUNCTIONING CHILD IS GONE. PANDAS symptoms may have flared in a lesser manner for weeks or years prior to the acute onset but often readily disappeared or lessened over time. If untreated with antibiotics generally we have seen a myriad of other symptoms will intensify in the weeks and months post-acute onset. If the severe symptoms do not stop and persist over many months, permanent cognitive damage can occur. PANDAS children may have moderate to dramatic improvement with antibiotics within one week of treatment, however, further interventions may be needed. How to stop the entire syndrome is still debated, but many parents and doctors report prolonged antibiotics (two months to one year) and/or IVIG (intravenous immunoglobulin) treatment or plasmapheresis. (This is quoted from the PANDAS network website. To learn more about this disease of hell, click here to go to the link)
Another important reason I wanted to share our journey of PANDAS with you is because a lot of the specialist and treatments aren’t covered by insurance and we need more awareness. We need more people to advocate for this absolute hell you watch your children struggle through. PANDAS was discovered with its first confirmed patient in 1998 and in 2015 the first collection of research was published. This is a newly discovered disease and not recognized so clearly by money hungry, greedy insurance companies. (I won’t elaborate on my feelings on insurance companies but I have a feeling you can probably sense it).
We have an appointment with one of the top specialist in the country, Dr Beth Latimer of Washington, DC this Friday. I will be driving down with Ellie to get testing and exams done. From there, we will determine her treatment plan. Our schedule has to be flexible because we have no idea how long we are going to be there and when treatment will start. The thought of even telling her she will get a shot makes me want to throw up because she will lose control and probably have to be restrained (this happened several during celiac testing).
Where does that leave me? Honestly, feeling kind of crazy. One minute I am fine and the next minute I am left feeling depleted and in a puddle of tears. This has tested our marriage and our family but we are determined not to let this shake us and we know that God has it all under control. I think moms naturally have “mom guilt,” now i feel guilty for so much….am i making the right choices? Because i have anxiety and depression, did i somehow give her my issues? And the worst is feeling like I am ignoring our oldest daughter Lilly because Ellie monopolizes 99% of my time. But after speaking with another amazing PANDAS mom, she made it clear, one of the first things i have to do is FORGIVE myself. It’s hard not to let your emotions get out of control when you have a child yelling at you and/or hitting you; it’s normal to want to shake your child and be like “get over it!”
What about work? Well, our absolute first priority in life or business is OUR FAMILY.
Right now my family needs me more than ever and that’s the most important thing in my life. Steven and I have a handful of weddings this year already scheduled (5 to be exact). When goal planning/financial planning for our year ahead, I was nervous and having anxiety because we didn’t have enough booked. For the past 4 years we have shot 30+ weddings a year and to only have 5 on the books for 2017 terrified me. I was so concerned we weren’t booking weddings BUT the truth is, God was just preparing us and protecting us because He knew that this season we would need to really focus on our family and this isn’t the season for us to be traveling to shoot weddings. 70% of our work is out of state and like I mentioned before, leaving has gotten increasingly difficult with the separation anxiety. Are we quitting photography? NO WE ARE NOT. Are we putting things on hold while we take care of our family? YES. However, we will still be shooting the weddings we have on the books, we will most likely not be taking anymore for the year (lifestyle sessions and local shoots are different and more feasible for us to shoot).
Steven has been applying for full time jobs in order to allow me to stay home and take care of Ellie and homeschooling. I am so thankful that he understood how vital this need was for our family. Right now, our only source of income has been my etsy shop that I opened several months ago. God has been so good to provide for us through my art. Am I scared as can be wondering if we can pay our bills and mortgage next month? Yea, I am real scared but I also know that nothing else matters other than getting my child healthy. I am willing to sacrifice anything to get my old Ellie back! I also know that God has never let me go without and we will stay faithful in God’s plan to know that He is ALWAYS good.
So I wipe my tears away and I take a deep breath and I pray. The hard times are what teach us, they make us grow, they make us fully dependent on God and that’s what He wants. He wants us to hand it over to Him and trust that He will take our burdens. That’s where it gets hard. Learning to LET GO and HAND it over to GOD. Releasing control, releasing try to do it all because naturally that’s what we try to do.
I have never felt as lonely as I have this past year. I have had “friends” just disappear. I’m human, so heck yes it hurts my feelings. Some just don’t understand what I or my family are going through or what I have on my hands (nor have I been super open about it either). I have been a really crappy friend, I get it. It’s almost impossible for me to “hang out” or chat on the phone. I am always bombarded with distractions and have Ellie hanging off my side. The friends I do have, that have stuck by my side, I am so incredibly grateful for. Recently God has been amazing in orchestrating connections between me and many other PANDAS parents. Once I began chatting with them, I felt a huge weight lifted off my chest. For the first time in so long, I didn’t feel alone. I didn’t feel insane (ok still insane, but they reassured me this would make anyone feel like they are losing it).
I will keep you updated as we continue this journey. It’s certainly going to be a marathon and not a sprint. Good thing I have training as a runner right? Ha.
The next question I get when I tell people what is going on is….what can I do for your family? PRAY. I covet your prayers and that is the only way we will get through this difficult time. So, if you can do anything we ask you to please keep us in your prayers. Another thing I want you to realize is, this is a medical diagnosis not an unruly/disobedient child. Ellie hates acting this way. I began having much more empathy when I realized this was a medical issue instead of a bratty child having a tantrum.
Lastly, here is a video that will give you a glimpse into what PANDAS looks like. This documentary is coming out soon. I still find it hard to watch because it’s so heartbreaking.
My Kid is Not Crazy documentary trailer from Tim Sorel on Vimeo.