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she builds others upMy mom told me some wise words once. She said, “hurt people, hurt people.” I got to thinking about that and man that is so true. I think about how many times I have lashed out at people because I was hurting myself. I have had my fair share of saying words I don’t mean just because I was upset at something else that was going on in my life.

Well, that happened to me last week, except I was the recipient. Initially when I read the comment this person left on my blog, I was a little shocked and it stung. Then, once I read it again, I could literally hear the hurt seeping through her words. My last blog post was an update and how I shouldn’t feel so frustrated or dislike my child sometimes. I didn’t think that would cause someone to lash out but it did. No one is immune to bullying or hatred. Here I am, deep in a valley, feeling emotionally defeated and I get a hateful email. I am sharing our story and being really vulnerable and transparent, then boom…..what do you do?

I am human, it is normal to feel hurt or angry and want to lash out. I thought about responding with this….

cash me outside

but I refrained…haha.

 

What I thought about in responding was how can I show her my heart? How can I love her regardless of her hurtful words? How can I give her grace and try to understand that she is just hurting?  So this is what went down….

hurt people

Why am I sharing this? Because what I want to share with you friend is that we need to understand grace. We don’t deserve grace but Christ forgives us over and over again. We can turn our back on him, we can do the most hateful things but there is absolutely nothing but grace and love coming from Christ. So my goal was to show this girl grace as Christ shows us. I wanted to show her, not only do I love Jesus and talk about loving Jesus but I want to SHOW how much I love Jesus by giving grace and showing my heart and still being kind even though she clearly didn’t deserve it.

 

It isn’t always easy, and I most certainly haven’t always taken the high road, but I feel like God has been working on my heart. Not only do I want to talk the talk but I need to walk the walk.

 

With all the hate going on in the world, if we started spreading love and grace, imagine how much more beautiful our world would be. Imagine how much more at peace we would be in our own heart? Knowing, we took the high road even when it wasn’t easy.

xo,

lucy signature

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

lucy signature

 

  • 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

lucy signature

 

 

  • 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

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

lucy signature

  • 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