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panda tshirt designI really am waiting on the time I can write and say it has been an amazing week or an amazing day or something has improved! I feel negative posting updates sometimes but this journey surely isn’t always butterflies and rainbows. While currently we are in the valley, I know before long we will be on the peak, so it is just quite the roller coaster but it is all about keeping the faith and putting one foot in front of the other. 

This past week was really tough.

Nothing has changed with Ellie’s medicine or symptoms. I finally got in touch with Dr. L’s office this weekend to tell them the medication is not working or making any changes. I really wish she wasn’t flaring right now but it seems every little thing sets her off and here we are walking on eggshells. As things have progressively gotten worse we realize she can’t function to do her school work. Her behavior is fine at school but academically she isn’t. When I talk to the doctors or other PANDAS parents they say, “don’t worry about school, right now it doesn’t matter.” It is just so different for us to think that way. Ellie has always taken a lot of pride in her school work and been an exceptional student and now we just aren’t supposed to care (right now). That is hard. As parents it is hard to know what the right decision is and what we should do but we aren’t left with many options.  I heard a good analogy….I wouldn’t expect my child to run fast with a broken foot….it is the same thing right now. I can’t expect Ellie to function like normal with a “broken” brain or a brain that is swollen. 

So, Steven and I made the tough decision to pull Ellie out of school for the remainder of the year on a medical leave of absence :(. After treatment she will be home schooled by a teacher friend who is stepping in to help. Because of the way Ellie takes her aggression out on me, it just isn’t healthy for me to home school her. The school the girls attend is very fast paced and even missing one day makes it difficult to catch up. She was falling further and further behind and we didn’t want her to flunk out. That would do nothing but damage her confidence even more. When we sat Ellie down to chat about school and the options at hand, she was bawling. I felt so bad and my heart hurt for her. What a hard place to be in at 9 years old. She is going to miss the social aspects of school, she loves her friends but it was almost a sigh of relief because she is aware she can’t keep up right now. She was in between a lot of emotions so we just held her and let her talk about how she was feeling. So, that was the biggest/toughest decision that was made this week in this journey.

I also went for my consultation to have my tonsils taken out. I was feeling very hopeful about the consult. This isn’t the first time I was told I need my tonsils out but I was more serious about having them removed so I wasn’t a strep carrier for my daughter. The particular ENT doctor we were referred to, we were told knew a lot about PANDAS and was totally on the same page. Well, when I met him, he was the biggest jerk ever. He basically rolled his eyes in my face over Ellie’s PANDAS diagnosis and me being a carrier as the reason I needed my tonsils out. He was harsh and rude and it took every ounce of whatever I have left in me not to just want to lash out. At the end of the consult, he said “so do you want to go ahead and schedule your surgery?” I said, “I would no more let you perform my surgery than I would my child!” I am pretty sure I had fire coming out from my ears, I was furious. I have heard from multiple parents that there are doctors that don’t know enough about PANDAS and so they almost roll their eyes at it….well I experienced that. I was so frustrated because I drove almost an hour to get to his office and having Ellie in the car is down right miserable. I had to pay out of pocket to see him which I felt was a total waste of money. It was the combination of all those emotions of utter frustration that made me burst into tears in the parking lot.

I also got my first hate mail on my blog about our PANDAS journey. I will share more about that another time.

On some positive notes, we have sold so many shirts it has blown my mind. I have had people wearing them and tagging me in their pictures! It is so exciting to see everyone on Ellie’s team and the amount of support we have in our corner. We added tank tops, bracelets and stickers to the mix and are excited to start shipping those out this week too. I have a link to the donation page as well as the products available on the left side of my blog.

Montana, our sweet golden doodle puppy is the best therapy dog ever and puts a smile on our face no matter how bad of a day we are having. We took him to a big doodle playdate today and he was the happiest boy ever. It was 75 degrees here in NC today! That is crazy right?!?

I am quite nervous about having Ellie home everyday with me. I am just counting down the days until treatment and praying a lot. I pray the Lord heals my daughter and all these symptoms go away. I pray for other children that no one will ever have to experience this awful disease. I pray for the parents that are battling with this disease in their children. I pray for your strength and courage and healing over your children. Miracles happen and I fully believe that Ellie and these children can be healed with the power of prayer.

Here is our past week in pictures.

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Montana, our therapy dog

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the battle everyday of Ellie taking her medicine. everyday.

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Ellie with her new tutor, Mr. Willis, whom she loves!

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the 45 minute long process of begging Ellie to just take her medicine every night.

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Shipping out LOTS of t-shirt orders this week for #elliesPANDASjourney

some of the fun bracelets and tanks for the fundraiser in the etsy shop

some of the fun bracelets and tanks for the fundraiser in the etsy shop

the silicone bracelets for sale in the shop

the silicone bracelets for sale in the shop

xo,

lucy signature

imageI shouldn’t feel like I want to run away and not come back.

 

See, moms are supposed to be nurturing and loving and kind and gentle. I don’t feel like I am currently any of those things. 99.9% sure I am not.

 

As a mom, they tell you to cherish every moment because they go by so fast and your kids grow up before your eyes, but how can I do that if I just want to run away?

 

A mom isn’t supposed to hate their child. A mom shouldn’t have this much resentment and anger towards their child.

 

I battle with these demons everyday.

 

One minute we are fine and life is good and then something triggers a flare up and the child I sacrifice every single thing for spits in my face (literally). It is so hard to love someone who constantly hurts you.

 

But here is the irony of it all. As I sit here, pretending to care about the Superbowl (Panthers aren’t playing..boo), all I can think of is the frustration I have towards my child right now….but I remember that no matter how angry or how terrible she might treat me, I still love her. I will always love her, a mother’s love is unconditional…just like our Father’s love is for us.

 

So many times we have basically spit in the face of God, turning our back on him and denying him heart and yet, His love is unconditional. He made the ultimate sacrifice and no matter what we do, he says, “it’s okay, I love you anyway.”

 

The realization of Christ’s unconditional love hit me hard tonight when I was wallowing in my own self pity of hatred for my own child.

 

We have had a really tough weekend. I was really praying this antibiotic was going to make some changes in Ellie but I have seen nothing at all and I am feeling a little discouraged. I really want to go outside and stomp and scream and throw a fit like a two year old demanding candy in the grocery store. Instead, I stay inside with knots in my stomach, tears in my eyes and a little bit of hope in my heart that tomorrow when she wakes up, it will be a good day.

 

I guess i just want to tell you that parenting isn’t easy. Whether you have a child that struggles or not, it is no walk in the park, but you shouldn’t feel alone. If you have ever just wanted to run away or play a really long version of hide and seek, you are not alone. If you have ever thought to yourself, surely I shouldn’t have these feelings towards my own child, you are not alone. If you have ever screamed and yelled to the top of your lungs at your child because you are so completely depleted and defeated, you are not alone. If you have ever questioned Christs’ love for you because some really bad crap is happening, you are not alone.

 

To all my momma friends, I am on the crazy train with you, you aren’t alone. Really sucky things happen but that doesn’t mean Christ is punishing us or we have done anything wrong. Sometimes in order for God to use us for His goodness, he needs us to endure some really hard times. I tell myself all the time that God gives his biggest battles to his toughest warriors. Well, I should win the Crossfit Games at this rate of toughness 😉 but I know that God is using what we are going through (and all the other hard stuff in my past) for His good. He gave me a voice to share our story and experiences to help others. He also gave us grapes to ferment for wine…I’m just saying, it is no coincidence.

 

Stay strong momma.

xo

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  • February 7, 2017 - 3:01 pm

    Lauren Villani - I feel your pain. I feel your sacrifice. I feel the hurt. I feel the hate rise up at times and I keep thinking how terrible of a mother I must be because I can’t stand my child at times no matter how much I love him. My son has ADHD with Oppositional Defiance. He has roller coaster emotions like his mama and very little if any self-regulation or impulse control. When he flies off the deep end I feel defeated and lost and tired and full of blame. The first time he told me he hated me and didn’t want to be a part of our family at 5 years old…that he should just die…my heart broke.

    He is almost 10 and its a 1 day at a time. We have good weeks and bad weeks, but I just wanted you to know…I feel you.ReplyCancel

ellie and dr kilbaneThe past week has been such a whirlwind of emotions. We have never felt so loved and supported. But there is also the realities of the day to day stuff that seems to be the hardest. The smallest things lead to the biggest meltdowns. I woke up with a migraine and didn’t feel like facing this reality again today, but that’s not so much of an option. Today was technically a homeschool day, but Lilly has been sick this week and Ellie is still not able to really focus to get any work done. She hasn’t been in school since last Thursday. She tried to go to school on Tuesday but every time we are in the car, she goes nuts with her stomach (which is all mental most likely) and we had to turn around and go home. I was so looking forward to working out and having that time by myself on Tuesday but I was back home with the girls. All I want is 5 minutes to myself but that hasn’t happened and right now it feels like it will never happen again. Good gosh I am EXHAUSTED!

 

I took Ellie to our integrative pediatrician today, Dr. Sheila Kilbane. She is working with us in conjunction to Dr. Latimer. Dr Kilbane is trying to get Ellie’s gut on track. Ellie already has a weak/leaky gut having celiac and now more than ever it is important we get her gut healthy! We got several different supplements to help with this. We specifically needed a probiotic with the strong antibiotics she is taking. Did you know there are several strains of strep in alot of probiotics?!? So I really needed guidance on what supplements to give Ellie from Dr Kilbane. I love having a great relationship with her and know she is 100% on our team and so supportive. We brought home 4 different supplements and will start each of them, one at a time to make sure her body is not having a negative reaction to them.

 

I think some of the things that no one ever really talks about (or at least I don’t hear about) is the stress and the toll this all takes on your family and marriage (and obviously your finances).  Steven started working a job on the other side of town and has to leave early and doesn’t get home until late. This is a much different schedule than we have been living for the last four years. We are doing everything we can to make ends meet and pay bills and pay for doctor’s appointments and medicine, that it is draining us. We are both exhausted and haven’t hardly talked all week and when we do, we are short with each other and just completely irritated. He is very internal about how he handles things and obviously, ya’ll realize I say it like it is and don’t hold back. It is hard. It is hard not letting this play a part in how you handle your life and your marriage. It is hard not letting this affect how you feel towards each other. I got frustrated he didn’t ask me certain questions from our doctor’s appointment in DC…..why? That is so stupid. He isn’t a mind reader but sometimes I feel like I need him to be, which I know is completely unrealistic. I feel like a neglectful parent because I can’t give Lilly the attention she needs and deserves. I need to help her with homeschool but the minute I give her one ounce of my attention, Ellie loses it and acts out to get my attention back. Lilly is the sweetest, most kind hearted child and I just pray I am not screwing things up. I think watching her sister go through all this will teach her valuable lessons in life but I really pray she doesn’t feel like I have neglected her or don’t love her as much as her sister. She has her first middle school semi-formal this weekend and I am excited to help her get ready and take her there. Just that car ride by ourselves (hopefully) will be such a special time to share. She is growing up right before my eyes!

 

No matter how hard the day to day is, no matter how frustrating it can get, we feel your prayers and your love. I have so much hope and feel so encompassed with prayer. I feel God’s presence and I know He is here guiding us and bringing the right people and medical team in our life. There have been countless people who have been true angels. I can’t thank ya’ll enough. A former couple of ours that we shot their wedding 3 years ago have set up a donation page to help us raise the funds for Ellie’s iViG treatment next month. (CLICK HERE). I also designed some fun tshirts as a fundraiser that I listed for sale in my etsy shop (CLICK HERE FOR SHOP). We will be adding more products in there too as a fundraiser.

 

I am determined to be a voice and an advocate for not only MY CHILD but OTHER CHILDREN dealing with PANDAS or PANS! It isn’t okay that insurance doesn’t cover this treatment. It isn’t okay there isn’t more known and every doctor in America isn’t in the know about this disease. A family shouldn’t have to choose whether to pay their bills OR be able to pay to take their child to the doctor for treatment! There has to be something done and I am so stubborn, I can promise you, I won’t stop advocating until PANDAS/PANS is viewed as like other terrible disease and is covered without question from insurance companies and doctors everywhere know the proper signs and treatment.

 

This blog post might be all over the place. Its 2am Wednesday (technically Thursday morning) and my brain gave up on functioning this week 🙂

 

xo

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  • February 3, 2017 - 3:56 am

    Amanda - You can do this! So many things you wrote here – I KNOW. I know EXACTLY what this strain is on a marriage and family. I know exactly what you mean when your kid has “stomach issues” and it’s all in the head. I know exactly what you mean about wanting someone to understand what all you learned that day or what it means or how you need to change things for the sake of that one child, etc. I know exactly what you mean when you say you feel like you are neglecting your other child. UGHHHHHHHHHH. Yes to all of it. We have our first appointment for diagnosis in April. We are hoping for sooner, but we will take April if that’s what we get. Keep posting this journey – it has been encouraging for me and many others, I’m sure. Here’s to making PANDAS/PANS a household knowledge and especially among doctors. My son’s pediatrician told me that it was just a phase and that I needed to keep his door shut at night to prove to him that he was fine. WORST ADVICE EVER. 🙁ReplyCancel

    • February 3, 2017 - 6:19 am

      lucy - I am so thankful you got him an appointment Amanda! That sounds exactly like what a pediatrician would say if they had no freaking clue! I had another PANDAS mom tell me today they were saying her daughter was just trying to manipulate her. Um, no…this is brain inflammation and it makes your kids a completely different human! If by sharing our complete messy life and journey is helping anyone than I feel like I am doing my job. xoReplyCancel

  • February 3, 2017 - 1:17 pm

    Shannon Routh - YESSSS!!!!!! Passion! Determination! you WILL make a difference and perhaps this disease and those dealing with a diagnosis or caring for someone with a diagnosis need a voice like yours. We can’t always make sense of why we are chosen to walk the paths we do…sometimes we see it hindsight and sometimes we may never know why. Praying for healing in Ellie. And praying God will show you a glimpse into why your family is walking this walk as you continue on this journey.ReplyCancel

  • February 3, 2017 - 1:22 pm

    Shannon Routh - Also….look up Med Gift. It is like a gift registry for people going through medical related things. Instead of registering for ‘gifts’, you are registering for different bills that people can sign on and donate money towards. Helps towards your daily needs.ReplyCancel

  • February 4, 2017 - 2:04 pm

    Kirsten Hall - You will make it through this…we all will….ReplyCancel

  • March 11, 2017 - 4:22 am

    Felicia armijo - Oh my dear i am struggling right there with you. I also have a daughter 9years old who has pandas. It is seruously a struggle everyday. It breaks my heart reading and researching about all these children and families going through the disasters that pandas causes. I have felt so hopeless but tonight finding your blog has brought such warmth to my heart. I pray the gods healing hands would just take this and cast it far away.ReplyCancel

We finally got the appointment with Dr Latimer, the pediatric neurologist specializing in PANDAS in Washington, DC. I’m anxious to write a post about God’s incredible timing in orchestrating every single person he put in my path and the way everything came together. I am still completely amazed. I will get to that.

 

When I got the call on Wednesday (1/25) that I was able to come in on Friday at 3:15, I had until then to gather every single medical record, school record and testing we had done since birth. But when this momma is on a mission, nothing will stop me. I ran around like crazy gathering all the stuff we needed and making arrangements for us to get there. Since Steven started a temporary job, he wasn’t able to come with us and would stay home with our Lilly.
Ellie and I planned on leaving Thursday evening. Since I am a night owl, I would much rather make the 6 hour drive at night then early in the morning. Well, yall, life is funny. Thursday, Lilly fell at school and hit her head on a rock and busted it open. It stopped bleeding so it wasn’t a major concern (we also didn’t suspect a concussion) while she was at school and she loves school so the thought of her having to leave early made her mad (isn’t that weird) haha. Their school had their homecoming basketball game that night and I took the girls for a little bit. Well, Lilly’s head started bleeding again and wouldn’t stop so I had to take her to urgent care. Low and behold she had to get a couple staples in her head. Poor thing did this without being numbed or anything, she was so incredibly brave. Ellie was watching all this happen and we look over at her….she was white as a ghost and said “I can’t breathe.” She just passed on out. Ya’ll all I could do was laugh because I thought Ashton Kutcher was going to come out from around the curtain and tell me I just got Punk’d! The urgent care took such good care of my girls and after a bit we headed home and decided we would wake up early to leave for DC.

 

The alarm goes off at 5 and I jump out of bed…..into dog poo. Yep, life is real funny. My puppy got into the cat food and his tummy was upset. He got sick all over my bedroom. I think the enemy was doing anything he could to deter me from going to DC. After that was all cleaned up, our bags were in the car and we were on the road.

 

The trip up to DC was pretty uneventful. Ellie does terrible in the car so I packed barf bags and all kinds of things for distractions. We sang songs and she napped on the way up. She never had an episode but mentioned Donald Trump’s name at least 4 million times. I thought if I heard it one more time I was going to be tempted to drink and drive.

 

We got checked into the hotel and got ready to walk over to Dr Latimer’s office across the courtyard. Before we walked over, I started having a lot of anxiety. I got so anxious that she was going to tell me I was insane and the one that needed to be committed. I swear PANDAS not only makes your kids feel like they are losing their mind, but the parents too! You question, is this real life? Is this really happening? Am I losing my mind??? I texted my mom and she likes to pretend she is Joel Olsteen so she calmed me down 😉

 

We arrive at Dr Latimer’s office and because they worked us in we were prepared to wait.  Ellie had been talking a lot about suicide and scaring the crap out of me and was in a really bad place the two weeks leading up to our appointment. I don’t know what triggered this episode other than the medicine change but once we did change to the Risperdal, we noticed she got kinder.

 

We were at their office for 5 hours. We answered a million questions and they did some testing on Ellie. We initially met with the PA Jennifer, she was really great with Ellie. She made her relaxed and comfortable to be there. Dr Latimer confirmed that Ellie is in fact 100% PANDAS, it was a total no brainer and then we discussed about a treatment plan. We are starting a month of augmentin today. Then we are headed back to DC the second week of March for an iViG treatment. What is an iViG treatment? (it is the use of a mixture of antibodies (immunoglobulins) from donor’s. This gives people with autoimmune disorders healthy antibodies).  This will be a two day treatment. We also found out that the treatment will cost between $12,000-$15,000 which insurance doesn’t cover. We will have to pay that amount upfront before she can get the treatment. We essentially have 5 weeks to come up with that money. Right now, we are just hoping on 1 treatment but that’s not for certain (insert sound of me taking a deep breath). After speaking with other parents of PANDAS kids, within days or a week after their treatment, symptoms are GONE! The thought of that makes me want to cry tears of JOY. When Dr L told me the plan and the expected results, I hit my knees and started crying. It was like someone took a huge weight off my chest and I felt hopeful for the first time in SO long. I was desperate to hear these words and I couldn’t believe it was actually happening, this was real, we were going to get my sweet girl back. 

 

Dr Latimer wants everyone in our home to have a strep culture. It would be a big risk for her to be in close contact of anyone that has strep. She would have a flare up and this would just a constant cycle. Well I tested positive as a carrier for strep so I will need to have my tonsils removed before Ellie gets her iViG treatment in 5 weeks. I am too old to have my tonsils removed 🙁 this is going to be fun said nobody ever. But honestly, I wouldn’t care if they told me I needed to cut my right leg off to help her, I wouldn’t think twice, it would be done.  So today I am making appointments for my tonsils to be removed and for Lilly and Steven to be tested also. Dr. L voiced concerns over Lilly having a potential diagnosis of mild PANDAS. Based on her growth chart and many of the symptoms, although Lilly has never had any behavioral issues, she has struggled with a processing disorder since she was young. She wants Lilly to have lab work done and a sleep study. That’s on my todo list today also. If she is diagnosed with a mild case of PANDAS, we are thinking the protocol would be tonsils removed and a long round of Augmentin, no iViG treatment.

 

Ellie did so great during this whole appointment. She was telling the nurse and doctors jokes. She met several other kids there who have PANDAS. I kept her entertained with the iPad drawing app. She really was great….until we were leaving. She saw a man in the waiting room (his child is also a patient) and she swore to me he was staring at her very strange and she started freaking out. As we walked back to the hotel, we saw the guy as we got onto the elevator. When I say she lost it, I am NOT kidding. She started screaming and crying and threw herself on top of me. She was convinced he was following us to kill us. She was absolutely hysterical. I had to give her something to calm her down because she couldn’t even function. She has severe paranoia that people are coming to kill her and people are always watching her. I finally convinced her we needed to leave the hotel and walk up the street to get something to eat, we were starving. She finally obliged but she was so overly paranoid, I basically had to carry her. We grabbed a burger at Johnny Rockets and she was having so much anxiety about people looking at us, that we had to leave and went back to the hotel to eat. Once we get back to the hotel, she was much more calm. It took her hours to relax enough to fall asleep but she finally did around 2am. We might have had to sleep with every single light on in the hotel but atleast she went to sleep. While she laid there asleep, with me rubbing her head, I just couldn’t stop crying. I was utterly exhausted, but more than that, I was so relieved and thankful that we had found the answers that I have been praying for and had a treatment plan. I just needed a plan to feel hope and we had it!

 

The next day she didn’t wake up until about 11:30. She was really excited about visiting the International Spy Museum. The only other thing she was looking forward to as much was meeting President Trump (Jesus take the wheel) and that surely wasn’t going to happen.  We had a great day together touring the city. We spent about 3 hours at the Spy Museum. Ellie had the BEST time! I was praying for patience all weekend. It is SO hard to be patient with a child who flips like a light switch and then talks about wanting to punch you in the face no matter how much you bend over backwards for them. I was determined that no matter what, I would stay calm and try to be incredibly empathetic to her feelings. So Saturday, we planned to see all kinds of sights but we only ended up at two of the places because she didn’t want to leave the Spy Museum. The other place was the White House. We took a picture in front of it and that was really neat experience.

 

Ellie was really exhausted and went to bed early that night…literally 5:40pm. Her sleep patterns have changed drastically with this new medication. The other medicine (Clonidine) made her pass out, this new medicine doesn’t make her tired so we are trying to get used to this new pattern.

 

Sunday we woke up, packed up and headed home. Remember the prayer and commitment I had to patience? Well, Lord I about lost my marbles on the way home. What should have been a 6 hour drive turned into a 8.5 hour drive. Ellie flips out in the car thinking she is going to throw up and starts kicking the dash and the windows, hitting me and screaming. She demands we have to stop for fresh air, so literally what felt like every exit, we made a stop at a gas station for her to walk around for a minute. I wanted to SCREAM to the top of my lung or shake the crap out of her but I would just text my husband and he would calm me down and say he was praying for us. We needed a lot of prayer and a large glass of pinot noir when I got home, with a bubble bath! Thank the Lord my husband knows me well and had that waiting for me.

 

So, that’s where we are as of today. We have a plan. We start the antibiotic today and we are making a trip in 5 weeks for her iViG treatment. Steven and I are racking our brains on some fundraising ideas to come up with the funds for treatment. When we figure those out we will announce them here. We are thinking of some mini sessions and Ellie wants to make bracelets….maybe t-shirts and heck I don’t know I might even sell my husband. hahah I kid I kid. We know God will provide. That money will come, just like the $1200 just to visit Dr L did this past weekend. My anxiety wants me to freak out but I feel at peace knowing God’s in control and lead us there and He is always faithful in providing.

 

Thank you for all the love, support and messages. We have read every single one and have felt your prayers. I am so thankful we can spread the word and get awareness for PANDAS. Connecting with other people who have experienced these same exact things has been so great. It is hard to describe exactly how this feels but because they have been there, without even saying a word, they know what you need. I am thankful for the connections I have made with other parents for support.

 

xo

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  • January 30, 2017 - 3:34 pm

    Julie Gaddy - Oh, Lucy, you and your family continue to be in my prayers. Please let us know what your money-making decisions are. God is right there with you, precious friend.ReplyCancel

  • January 30, 2017 - 3:36 pm

    Amanda Carlson - I was hoping you would write your experience soon, because I so need to know. I love that you added your humor into this post and made me laugh out loud, even while I understand exactly what you are dealing with. I keep wondering though…..when I finally get my son tested, do I WANT him to have PANDAS so that I have a diagnosis or do I hope he DOESN’T have it?! It makes me sick either way. But we need some help. He has mild symptoms right now, but oh how we have had the paranoia and the food issues and the no sleep issues like crazy. I revel in these downtimes where his issues are not ramped up. Please keep writing and sharing. This has helped me so much. I was feeling hopeless before since his pediatrician told me THREE YEARS AGO that this was just a phase and made me feel crazy. 🙁 I have known this was what we were dealing with for that long and have not had him tested because the doc made me think I was the nutty one. So ridiculous. YOU have been the one to give me the push to start calling other docs. THANK YOU THANK YOU THANK YOU.ReplyCancel

  • January 30, 2017 - 3:49 pm

    Tosha Long - Hey Lucy! I don’t know if you remember me from high school or not, Tosha Linville but I wanted t say that I will definitely be praying for Ellie and your family! I actually work for a plasma company, Octapharma Plasma, Inc. that manufactures iViG therapy along with some other plasma derived medications and I can tell you that that this is truly lifesaving medication and will make the world of difference for Ellie and your family. Rest assured, you are definitely going down the right path!ReplyCancel

  • January 30, 2017 - 4:02 pm

    Deborah Norman - Lucy, you are an incredible mom! I am in awe! I am so grateful to God for opening doors and answering prayers. He is always faithful. He will provide. Can you set up a Go Fund Me or provide address for direct donations? Love you so much!ReplyCancel

  • January 30, 2017 - 5:12 pm

    Jaime Gaskins - Lucy- I think about you and your family so often! Still sending you so much love and prayers. I’m so glad you have hope and know sweet Ellie will hopefully be better soon. Can’t wait to hear about the fundraiser! xoxoxo -JaimeReplyCancel

  • January 30, 2017 - 5:26 pm

    Elizabeth - Hello Lucy! Last spring, our son, Logan, was diagnosed with a rare Autoimmune Disease, ADEM, that robbed him of almost all aspects of life, besides breathing. Thanks to the grace of God & the wonderful staff at CMC & Levine Children’s, he has made a remarkable physical recovery. As the summer & fall of 2016 came around, my husband & I noticed that the little boy we knew that had such a passion & joy for life had disappeared. We began seeking help from the mental health world to try and “save” our son. So many of the issues/symptoms/concerns/financial burdens that you mentioned in your blog posts are similar to our struggle. In fact, our psychologist has brought up PANDAS as something to keep on the radar. Luckily, Logan has no history of strep. I wanted to let you know that you are not alone in your struggles. You are not alone in your fears. You are an amazing Mom who is fighting for her family – what a role model for your daughters and for other mothers, including me. I will keep your entire family in my prayers & continue to check with your blog/IG for fund raising opportunities.ReplyCancel

  • January 31, 2017 - 1:33 am

    Amanda Boyles - Lucy, I feel God is using your daughter’s experience to help so many and remind us of God’s promises no matter how our emotions, feelings, fears, and circumstances make us feel. I commend you and Ellie for being so brave and honest to share a true struggle you are going through because let’s be honest we all have them and encouraging one another and being real reminds so many of us, we aren’t alone. I praise God for his truth and timing for you and your family! I read Mark 11:24 “Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours” this morning and thought of you guys. I am praying for strength, peace, faith, and healing for Ellie and your family! God bless you guys!! 🙏🏻🙏🏻ReplyCancel

  • January 31, 2017 - 12:16 pm

    Caroline - Lucy, I attended one of your calligraphy classes and both of your girls were there helping. They exuded such joy and truly made the class more fun! I am so sorry Ellie and your family are going through this. While sharing Ellie’s story has to be difficult, you are educating and inspiring so many in the process. Please keep us posted on fundraising opportunities – I would like to donate if/when possible. Ellie and your family will continue to stay in my thoughts and prayers.ReplyCancel

ellies pandasWhere 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.

 

Xo

lucy signature

  • January 25, 2017 - 11:18 pm

    Rose Butterfield - Will keep you and your family in prayer.ReplyCancel

  • January 25, 2017 - 11:27 pm

    Deborah Norman - Lucy, I have been really praying for you and your precious family. Have you set up a Go Fund me page or anything in place for donations? Much love to youReplyCancel

  • January 26, 2017 - 12:55 am

    Amy - Lucy,
    I’m so sorry. I can’t believe all you’ve been through… devastating. My son was very ill when he was a baby and it took almost a year for a diagnosis. It was one of the darkest times of my life. Helpless. I will definitely be praying for your family- for patience and wisdom, for healing and joy. Thank you for sharing your story.
    AmyReplyCancel

  • January 26, 2017 - 2:21 am

    Terri Herman - Thank you for sharing! Know that was not the easiest thing to do but this will help others, I am sure. I had a former preschooler diagnosed with this and he had to have a second round of antibiotics. He is doing better now. Praying your Ellie will find relief too. Please take care of yourself, you are the only mom she has!ReplyCancel

  • January 26, 2017 - 2:39 am

    Hallel - Oh friend. My heart absolutely breaks for you all. Will be fervently praying. Praying for answers and peace while you are waiting.ReplyCancel

  • January 26, 2017 - 3:05 am

    Jessica Ballard - Prayers for you, Ellie and your family. For peace, for answers, for course correction. We pray for continued hope.ReplyCancel

    • January 26, 2017 - 4:24 am

      Margaret - What an amazingly brave and bold story you have shared Lucy! So truthful and eloquently written! I can’t imagine your difficulties and frustrations but I truly admire you so much for staying strong and fighting for your Ellie & your family! My kids are grown now and I continuously felt guilt about the way i raised them, I think all parents do that! My oldest suffered and still from extreme ADHD and we questioned every move. I still do to this day! We do our best as a parents… ultimately though, I think love and patience sometimes are the only “right” we can do! Never second guess yourself! Keep on fighting and loving! Know you are doing for Ellie what you can. You are fighting for her! You are on her side! You are her strength! You are amazing! Know you have prayers out here! Ellie will be great! God is Good! She is lucky that God chose you and Steven to be on her side!
      PrayersReplyCancel

  • January 26, 2017 - 3:57 am

    Jamie Dalton - You have had so much on your plate but I am so glad to hear that you have some answers right now. Just the piece of mind that it gives to finally have a direction to work in.ReplyCancel

  • January 26, 2017 - 4:26 am

    Judy - I have a friend in CT whose daughter has pandas. If you would like I could have you get in touch with her. Maybe just for moral supportReplyCancel

  • January 26, 2017 - 5:27 am

    cheryl lemke - Praying for your family.ReplyCancel

  • January 26, 2017 - 11:55 am

    Barb - Thank you for sharing. I’m so sorry for the pain and suffering you all have endured. How awesome though to finally have answers and to get to work on real treatment for your little girl. Your ‘God was preparing us’ statement really hit me. So much truth and comfort in that. I bumped in to a Steven Furtik sermon [on Instagram!?!] on this very point (The Power of Pre). A powerful message that smacked me in the face. If you are ever feeling weak and need a bolster – I highly recommend a watch or listen. It’s powerful and it will restore you. I found the link to the full sermon on the Elevation Church website. All the very best to you and yours. ~ Barb @petersonmadeReplyCancel

  • January 26, 2017 - 1:01 pm

    Jennifer Anthony - Lucy- I’m so sorry to hear what Ellie is going through. She is such a special child (not that this should happen to anyone)!

    I’m glad you have a diagnosis. I’m sure the road won’t be easy from here…but at least now you are in the right one!

    If Ellie is ever interested in seeing some of her old playmates, please let me know. Drew would love to see her!

    JenniferReplyCancel

  • January 26, 2017 - 1:07 pm

    Tracy Burke - Sweet Lucy! I feel your pain. I feel your hope too! You have my prayers 🙏🏼ReplyCancel

  • January 26, 2017 - 2:23 pm

    Prissy Sherrill - Thank you for this incredible blog! Praying for you, Steven, Lillie and Ellie!ReplyCancel

  • January 26, 2017 - 3:13 pm

    Julie Gaddy - Oh, Lucy. You break my heart and buoy my heart at the same time with this story of your family’s journey thus far. Yes, absolutely, I will be lifting all of you up in prayer. Our God is an amazing God. We know that we must trust that His time is the right time.
    Safe travels. Please know that there are a lot of people who love you and are praying for you.ReplyCancel

  • January 26, 2017 - 8:52 pm

    Shannon - Hi Lucy! My sister sent me the link to your blog because, I too, am the parent of a Pandas child. He is 16 now and we have been dealing with Pandas off and on since he was 4. So empowering to hear another Pandas parent echo the feelings and emotional roller coaster I have experienced over the years. We too see a specialist in Connecticut, Dr. Dennis Bouboulis. It has made all the difference in the world. Let me reassure you, know that we understand Pandas, life is improving on a continual basis. There is a light at the end of the tunnel that you some days think you will never escape. At 16, my son shows no signs of Pandas and I see his true self shining through. Although I worry I may never stop constantly watching for the symptoms I’ve grown so use to noticing in him during a Pandas flare up.Prayers and best wishes as you go through this difficult journey with your daughter.ReplyCancel

  • January 27, 2017 - 1:06 am

    Athena Van Waardenburg - God bless you and you will be in my prayers. i understand what you are going through, by experience. My heart aches for all of you! When doctors can’t come up with a diagnosis and treatment, their knee jerk reaction is: your child Is “mentally ill” , and they feel quite sure about. That never ceases to amaze me.
    My one humble advice of support, when the moments are right, “talk to you daughter, but I mean really talk to her and connect with her heart. And remember, she is no dummy, she is very aware; so when you acknowledge her awareness, both your journies become more meaningful. Bless you, and may the Angels of White Light protect and be with you all.🙏🏻ReplyCancel

  • January 27, 2017 - 4:48 am

    Jackie Cooley - Sending so much love, prayers for peace, answers, and for Ellie to feel better and comfortable with her surroundings again and more like her old self. God has His arms around Ellie, Lilly and you and Steven and Marlon and Kitty cat. He has led you all this far and will continue to have His arms around ya’ll and His angels over you. I am not in Charlotte now but in Wilmington, but if there is anything I can do, you’ve got it. Prayers are a given..always Hugs sweetheart and blessings Miss JackieReplyCancel

  • January 27, 2017 - 5:09 pm

    Shannon L - Prayers for you and your family. When my daughter was 5 we went through some very difficult health issues with her. Major temper tantrums and OCD behavior as well as panic attacks. It was hard to get answers. Her issues had to do with asthma and the OCD was attributed to a reaction to xyrtec (allergy medication). All of this happened in August-November. Strep throat is a nasty thing and can lead to so many issues. My daughter often struggled with strep throat. By the next Feb my daughter was hospitalized and had had the flu shot. Possibly a combination trigger of the shot and strep and she was diagnosed with HSP. An auto-immune disease that attacks the blood vessels and can damage the kidneys.
    I wish more pediatricians were more knowledgeable of the things to watch for and how to prevent these auto-immune reactions. They need to recognize them sooner, so their patients can get the help they and their families need.
    By the way my daughter also has celiac, we homeschool and we have done wedding photography. My daughter is now 21 years old. Once we got her diagnosis, we were able to get her better. Knowing what is wrong is about 75% of the battle. She was the healthiest in our family for a long time. In more recent years she has had some episodes of HSP and I worry about her all the time. (I used to call her my appendage.) God bless you and your family! I pray that you are on the road to recovery and continued answers in how to best help her. You can do this. You are a great mom!ReplyCancel

  • January 27, 2017 - 7:50 pm

    Kristie Tighe - Lucy and Steven. I’m so very sorry to hear about Ellie and all that your family is struggling with. I hope that your search for the right doctor and the correct treatment comes quickly and that Ellie is feeling more like her old self asap. I cannot imagine how scary and uncomfortable it would be to be 8 years old and to have things seem so out of control . Thank God and thank goodness Ellie has such a loving and supportive family who has her back. My prayers are with you and with your whole family.ReplyCancel

  • January 27, 2017 - 10:44 pm

    Frances Mundy - Praying for all of you,Lucy. Parents never know what they will have to go through with raising their children. You are a trooper and I hope and pray all turns out well.ReplyCancel

  • January 28, 2017 - 2:29 am

    Jama Mulkey - As a mother, my heart aches for your pain. As a Christian, my heart is filled with gladness that God has a hand in Ellie’s healing. Your faith and trust in your Lord with guide you, as He has thus far. Continued prayers for you and your beautiful family.ReplyCancel

  • January 28, 2017 - 5:50 am

    Lillian Johnston - Lucy, I am so glad you wrote this!! Wow! What a journey you and your precious family have been going through! And with such grace and humility! Bless you sweet sweet Lucy! I’ve been going through a hell too but of different sorts. Yes!! Continue to lean on Jesus!! He will not let you down!! He will see you through this!! Continue to put Him first and your family first too!! He will Not Let You Down!!!
    I will ferevently be praying for you sweetheart!!! You, Steve, Ellie and Lily!! You have my word I will keep you covered in prayer!!!
    Love you!! Hope to catch up with you when things are a little more calm!! Praise God the Dr put two and two together!! Will also be praying for the other families dealing with PANDA.
    Love you so much sweetheart,
    LillianReplyCancel

  • January 28, 2017 - 8:38 am

    Alicia Husband - Thank you for sharing your story, girl! I’ve always been fascinated by your many talents and this journey you are on is sure to become another opportunity for growth, creativity and followership, in the midst of hell, as you put it. I will be praying for your family as I know it impacts so many. I’ll certainly keep you and that sweet daughter in my thoughts too. Keep us posted & keep your head held high, y’all will find the best way to manage this among everything else. Good luck with the testing!ReplyCancel

  • January 28, 2017 - 3:18 pm

    Kelly - Hi! My friend just texted me this blog post because we are going through the exact thing with my 8 year old daughter. What a blessing to find your post! You are not alone and neither are we! Our crazy, full-on symptoms started over this Christmas break. I went straight to my prayer warriors and answered prayers became rolling in. One of them mentioned PANDAS – I had no clue what it was, but it sounded exactly like my daughter. Our pediatrician agreed, tested her, and yep — has had strep in her system. Put her on antibiotics and her symptoms for the most part went away. We took her into an ENT for a tonsillectomy because she does not have any symptoms when she has strep and has had it a lot. I ended up knowing the ENT doctor! A week later we had her tonsils removed (this Tuesday to be exact!) and we have been home recovering. We are still having hard days – last night was rough. I am praying we can figure this all out ~ we have a therapist we are going to this week.

    In the same way God has been paving the way for you for this upcoming year, I believe he has done the same for us. So many answered prayers. I will be praying for you and your family. And know you are not alone!ReplyCancel

  • January 28, 2017 - 6:29 pm

    Kira Campbell - Hi – Several friends sent me a link to this blog when your first published it – I am also in Charlotte, and in the midst of PANDAS hell – although thankfully we are starting to see our daughter again after a long, long absence. Dr. Latimer is amazing, and I hope your visit goes well. If you have to do any bloodwork in Charlotte proper, I can’t say enough amazing things about the techs at the Levine Children’s Specialty Clinic Lab – they have done all our blood draws, no matter how long it took. Our kids hate this as much as we do – but you CAN and WILL help your daughter find herself again.ReplyCancel

  • January 28, 2017 - 8:23 pm

    Susan Pollak - Oh my goodness, Lucy! It was heartbreaking to read about what you and your precious Ellie have been going through! I have never heard of this terrible disease, but so happy you finally have a diagnosis and can begin treatment soon. Our prayers will be covering you all, as well as prayers for Dr. Latimer as she tests Ellie and formulates the best treatment protocol. Thank you for opening your heart to share your journey with us. Prayers going up!ReplyCancel

  • January 31, 2017 - 3:35 am

    Hannah Simmons - Lucy, I am just catching up on what you and your family are going through. Please know I will be praying for you and your sweet girl. Your girls are so blessed to have a mother like you! Lean on your faith and know the Lord will not let you down. Sending huge hugs and lots of prayers your way!ReplyCancel

  • February 1, 2017 - 2:49 pm

    Michelle Morton - Lucy…..I love…love…LOVE…when people are real. As mothers…we never know what the “challenge of the day” might be. Looks like yours has been extended much longer than that….but I am grateful that you shared. Too many moms struggle in silence and are ashamed of real life issues in their families. But God says that ALL THINGS work together for good for those who love Him. ALL things. That refers to us…the real people…not just “WonderWomanMom” with her excellent, robot children. I do not think those kids are normal anyway. 🙂
    Thank you for your honesty. If I knew you…I am sure we would continue to be friends….even with your stuff.
    Be encouraged!!
    MichelleReplyCancel