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ellie rose 4 years old_0001Like a pace car leading the pack out on the track, this is our pace. The speed is unpredictable and the curves are too.

We have had many good days to celebrate and we do! We celebrate every tiny victory. The majority of Ellie’s OCD is gone. The obsession with food gone. Her witty personality and humor is back. Academically she is almost completely on track. She is making all A’s in our homeschool program. The flares are less. The hugs are more.

There are beautiful days. The days where the sun is shining and there are a lot of smiles and lots of laughter. Where she is independent and able to tackle the tasks for the day. These days are just amazing. But then, the very next day, while still floating on cloud 9, the rug gets pulled out from under us and it seems we are back in the center of pandas hell flaring.  Days where I have to lock myself inside my closet and cry because I physically don’t know how much more I can bear. Days where I can’t brush my teeth or remember the last time I showered. Days where we could have possibly been wearing the same clothes for 3 or 4 days in a row. My heart aches when I see her unable to control her own emotions and actions. It not only terrifies everyone in the house but it terrifies her.

I’ve been asked since we still have these flares, does that mean the IVIG treatment didn’t work? The answer to that is no, it doesn’t mean that at all actually. There are several outcomes you can have with this treatment. 1. It won’t work at all. 2. It works immediately and you see almost instant gratification and 3. It gets worse before it gets better and takes anywhere from 4-6 months for the full results to be seen. We are somewhere between outcome number two and three. Ellie immediately responded to the IvIg treatment in a positive manner. I think a lot of it had to do with the solumedrol (steroid) in conjunction with the treatment. She got very sick several days later (which strangely is a good sign). Then we started crashing about two weeks later. It got bad. Then I started noticing some habits had disappeared. The separation anxiety wasn’t paralyzing. The doctor told us it was similar to a ladder. The behaviors that started first are the last to go as you climb back down that ladder and the ones that were newer leave quicker. We have had some scary flares. Flares that were even worse than before. Flares where the police was almost called and emergency calls had to be made to the doctors. This is scary scary crap.

The unpredictability of each day and the stress of it all has put my own depression in a full tailspin. It has left me getting debilitating migraines weekly for the past seven weeks. But I am thankful the flares are fewer and farther between. We take things day by day and truly hour by hour. I never know what each day will hold as I rise up in the morning, but I do know that God knows. God prepared us for this battle and each day when I get up, I pray to Him, to give me that strength I need to make it through the day. I pray that He will fully and completely heal my child in every way. Every day, this is my prayer and I know in His time, it will happen. Isaiah 60:22 ‘When the time is right, I the Lord, will make it happen.’ There are many lessons on empathy, patience, anger, trust, control and faith that God is teaching me through this journey. There is always purpose in pain and I know that I am learning valuable lessons in this process. So for now, we roll with the punches (sometimes very literally) in the stride of two steps forward and one step back.

xo,

lucy signature

I am tired and I am hurt.

I have sacrificed everything and do everything for a child who curses me and hits me.

My entire life has been hijacked and turned upside down because of this disease.

I am constantly judged in public by strangers when my child acts out because she looks “normal” so it must just be my parenting and there needs to be more discipline so she doesn’t act like that.

I am tired of not being able to spend time with my other daughter because the second I do, she flips out that my life isn’t all about her.

I am tired because for the past year my husband and I haven’t hardly slept in the same bed because of her night terrors and separation anxiety.

I am tired of friends not reaching out and disappearing because it is awkward to talk about. Me: “How’s it going?” Friend: “Great, my daughter made the honor roll and is doing great; how about you?” Me: “Well, my child didn’t commit suicide today so I will say it was succussful.” That’s not a conversation people want to have or are comfortable with unless you’ve walked these paths.

It is hard for me to answer you when you ask me how I am doing. I don’t want to be negative but I also don’t want to be fake either.

I am tired of family who isn’t supportive and doesn’t reach out or act like they care.

I am tired of my husband feeling let down because he doesn’t have that support.

I am tired of researching until all hours of the night so I can find the solution for my daughter to get out of this living hell.

I am tired of people who are close to us asking what PANDAS is. Please, if you care about us, do your research.

I am tired of feeling like I don’t think I can go on another day.

I am tired of feeling tired. Physically, mentally and emotionally.

This is the tired face and words of a momma doing the best she can for herself and her daughter who has PANDAS.

  • March 24, 2017 - 11:16 pm

    rebekah - I’m sorry you’re having such an incredibly, difficult time. People do question parenting when children seem out of control. I had that happen to me many, many times with my child when she had ADHD and oppositional defiance disorder.I went years with an older child that slept 5 hours or less a day and every day was filled with tantrums, screaming and really awful disobedience. It was hard. It was impossible. I also felt angry when people acted like I was embellishing the facts or that it wasn’t even really a thing. Every day and night was so, so hard. I hope your daughter heals soon and you get all the support and answers you need.ReplyCancel

  • March 24, 2017 - 11:32 pm

    Frank Kudlac - You and your family are in our prayers – The KudlacsReplyCancel

  • March 25, 2017 - 12:18 am

    Marilyn Roseboro - No one never ever knows,why you go through things, but this I do know when this over you’ll have a TESTIMONY. A TESTIMONY, how God brought you and your
    family from dark to light. How God healed your sweet baby. You see the enemy wants you to focus on the bad, but you have to have faith like Job, that God will bring you through. Don’t worry about the friends that’s not there for you, they were never truly your friend.. I been through some storm too, I had to learn look for the good in the bad times.Remember Job loss everything in a day. So on those days you think you can’t make it look to God . Seek him through prayer surround yourself with positive thinking people. When you need a break don’t be afraid to ask for help . May God bless you and your family. I pray in JESUS NAME HEALING FOR ELLIE.ReplyCancel

  • March 25, 2017 - 12:29 am

    Chrissy Thomes - Lucy, I offer my love, my support, and my understanding. While I do not have a child with PANDAS, I taught a child with it and I understand some of the difficulties you’re struggling with. Children with mental and emotional disorders suffer a great deal, and their parents do, especially. I know we only know each other through friends of friends at the same school, but if there’s anything I can ever do, please let me know. If you want to email me, I’ll give you my phone number and we can text or chat just whenever you need to or feel like it. And I mean this! Just breathe, honey…breathe. And know you’re doing great because you’re doing the best you can. You are an outstanding mom. Anyone that doesn’t see that is blind.ReplyCancel

  • March 25, 2017 - 12:31 am

    Julie Gaddy - Dear, Dear Lucy. My heart cries out for you and your family to feel some peace. I do not exactly know your journey; however, Rachel’s youngest son had very serious acting out when he was growing up. He is developmentally delayed and has epilepsy, and we think that some of his issues was his inability to express his feelings in any way other than lashing out. So many times he has thrown his shoe or another object from the back seat as I was driving. So many times he has literally knocked everything off a table in rage. It got to the point that they couldn’t take him anywhere, so they stayed at home. The family unit was wrecked. Thankfully, with excellent doctors and teachers, some of his issues have assuaged. No, we didn’t live with PANDAS, but in a small way, Rachel and I do understand your feelings of utter tiredness and aloneness and hatred for the cards we were dealt. Please, please continue to reach out to other families walking the PANDAS journey. Any tiny hint of understanding from them will be a mountain of understanding for you. Continuing to pray for you and your family daily. Push on, sweet girl. You will never regret it.ReplyCancel

  • March 25, 2017 - 12:50 am

    the hamm fam - if y’all ever need anything, give us a call. we’d be happy to help out.ReplyCancel

  • March 25, 2017 - 1:21 am

    Shannon & JJ - We love you. No idea what this is like for you guys. The best we can do is pray for each one of you. ((Hugs))ReplyCancel

  • March 25, 2017 - 2:53 am

    Carol Featherstone - Lucy,
    I am so very sorry that both of you are going through this! I wish I was closer to you and that I could help in some small way! People have no idea what it’s like to go through diseases that most people do not understand!

    I will certainly keep you in my prayers and ask Gods hand in making things easier in your life!

    I love you sweet lady,
    CarolReplyCancel

  • March 25, 2017 - 10:20 pm

    Heather - I’m trying to decide what to say, because I have walked this path. All five of our kids have been diagnosed with PANDAS. Some worse than others, bug all five. So I get it. Keep walking, mom. Keep walking, dad. It’s a hard road Find friends on line who get it, and who will pray. In fact, anyone who will pray should become your friend, even if they don’t get it. Take any prayer you’re offered, because it’s key, in my experience. I’ll tell you one thing which may encourage you. Our oldest PANDA has a life. He’s graduated from college and is married our second PANDA has Lyme (as do most of the worst cases, in my experience) and he’s living on his own, but us not well. The next three are all doing pretty well, in general. We still have days or seasons which are weird and hard, but there’s been a lot of progress. I know that today this may not help much. But I’ll be praying for you, and I’ll be your friend, if you want!ReplyCancel

  • March 29, 2017 - 2:59 am

    Shirley Turner - I am a grandmother of a remarkable boy that has been cursed with PANDAS. Once an outgoing, caring, sensitive boy, he has changed in personality and confidence. The hell he is going through should never, ever be placed upon a child. My heart is broken for him, and I feel as if his young childhood has been totally compromised. I also worry about the safety of my daughter during his rages brought on by his frustration of not being able to control his OCD, his mind and his actions. She is also tired of the sleepless nights from him not being able to sleep. She has total parental support, but she feels as if few outside of our circle understand the severity of this disease. I abhor the doctors who are too closed minded in their mundane practices to research this disease. Moms, I pray for all of you.ReplyCancel

  • March 31, 2017 - 6:12 pm

    Julie - Lucy, I’m sorry your hours/days/weeks are rough. My DD7 has PANDAS, we are currently awaiting an appointment with a specialist to get her treated. It’s a lonely road whrn others don’t understand. I get the parenting comments also when she melts down, steals stuff, won’t follow directions at school, etc. My heart goes out to you.ReplyCancel

  • April 2, 2017 - 9:55 pm

    Crystal W - I hope that the treatment your daughter is getting will heal her, I had never heard of PANDAS, until I read it on your instagram and I work in healthcare , so I got online and researched it , I will pray for you and your family daily I can only hope that this gets better soon, continue to be as strong and supporting mama as you can be for your child, one day she will look back on this and thank you for all that you have done and sacrificed for her! You are strong and beautiful , keep your head held high and try your best to see the best in the worst situations! ❤️ReplyCancel

headerFriday. Aka day two arrives of our treatment and at this point a lot of my anxieties had eased. We already had a full day of treatment and she did really well. I was excited about another day considering her response. Ellie wasn’t nervous since her IV line was already placed. We ate breakfast and arrived for treatment at 11. Ellie was excited to see her friend from yesterday.

 

We arrive first, so the nurse starts removing the tape around her IV line. Then she says “oh my God, your line came out, we are going to have to do this all over again.” My eyes were as big as silver dollars and Ellie basically just let out a big scream and started to cry. I was internally crying with her. Lord please don’t let this lady stick my child again and go through the mess we went through yesterday!!! Ellie was essentially HYSTERICAL and I don’t say that lightly. She lost her crap! She is so strong (she was sitting in my lap) and trying to superman her way out. It took 4 people to hold her down as she was screaming to the top of her lungs and crying so hard she could hardly catch her breath. They kicked me and my mom out of the room. I went into the hallway and cried my eyes out. Emotionally I was exhausted and broken. I could hear the sheer terror in her voice. She was yelling “mommy, please come help me.” It crushed my heart like nothing I’ve really been through before. It’s one of those unpleasant moments you play over and over in your head and it won’t go away. I felt absolutely horrible. I still feel guilty. I knew her IV had to be placed and I did what I thought was best. I know that the staff was doing their job and this isn’t their first rodeo but it is mine and I died a little inside. After three more sticks they finally got the IV line in, once again. Praise the Lord. Once they got her all ready I came in the room. Her face red and puffy from all the tears. All I could do was hold her and tell her it was going to be alright, mommy is here. She sat in my lap a while as I rubbed her head. She was exhausted from that incident and rested for a while as they started her fluids.

treatment 4

Ellie wasn’t as peppy on today’s infusion. At this point, another 6 hours of sitting around in a chair with tubes attached to you, you’re over it, especially at 9. She was a little bored but mostly tired. Towards the end of the infusion she started to get a headache and not feel well. I requested her Tylenol and Zofran early to help combat those side effects. After 6 hours we were done. Like the day before we left and wanted to go get dinner. Since all we knew was how she reacted to treatment on Thursday that’s kind of what we expected. Well, expect the unexpected. She started flaring and was OFF THE WALLS. She was acting out and wouldn’t stop talking. You couldn’t get a word in edgewise. She was cold as we walked back to our hotel so she flipped out about it. The wind hitting her body and face was clearly enough to just set her off. She started jumping up and down in place throwing a tantrum before we made it back to the hotel. As empathetic as I wanted to be, I also wanted to just lay down in the street and get hit by a car at this point. I was so freaking exhausted. Every waking minute I have been at her side to rub her, give her medicine, comfort her and I was just at a breaking point. I’m glad my mom was there. She tends to always talk me off that ledge 🙂 a lot of times Ellie won’t act out like that in front of other people but my mom saw basically what I deal with on the daily.

 

We get back to the hotel and Ellie is so tired, yet she is wired from the solumedrol steroid they give her towards the end. I laid there rubbing her back and head for a couple hours and she finally fell asleep.

 

Saturday came and she was excited because we had made reservations to eat at the American girl doll bistro for a late lunch. We get an uber and head that way about an hour or so early. She starts getting sick in the uber. Complaining of dizziness and a headache. It progressively got worse and it was all we could do to have her eat at the bistro. She ate a sorbet sundae and that was it. She wanted to leave. She felt like she was going to pass out and she started running a temperature of 102. We make it back to the hotel and it was rest for the remainder of the night which including getting a pizza delivered.

Sunday she woke up around 5am complaining of a sore throat and headache. I got up and gave her a dose of medicine and had her down some fluids. At 5:45 she woke back up and said she felt like she was dying. This is the nightmare migraine on steroids they speak of…. I thought we had passed this stage but unfortunately not. She couldn’t even open her eyes. Her temperature was 104 and she moaned in pain. We got cool rags to put on her forehead and neck (for nausea). She wouldn’t even let me sit on the bed because she said I moved the bed. We were supposed to fly out in a couple of hours but there was absolutely NO way we were leaving considering the circumstances. She threw up and moaned from the pain until about 2pm. She slowly started getting better and was able to eat a couple bites of food and drink more fluids. I called American Airlines trying to get our flights changed. I wanted to get out of there before the snow hit on Monday. They said we could change it to the 8:00pm flight but they charged us $789. Absolutely ridiculous. I was fuming but nothing could change the fact that there was no way my poor child could get on a plane right then. Of course they said, “there was nothing they could do.” Note to self. I won’t be flying them again and I will get travelers insurance next time. My mom didn’t change her flight because they wanted to charge her over $1000. Insane.

 

My mom went to the store and got us a bunch of snacks and drinks before she had to leave for her flight. I couldn’t leave Ellie’s side to eflying homeven go to the bathroom so going to get food would have been impossible. Around 4:30 Ellie started pepping up. She wasn’t completely herself but her witty demeanor came back and she started cutting jokes. I told her we needed to fly out that night. She was hesitant but the motivation was seeing Montana, our dog and her kitty, Maddox. She started getting sick on the way to the airport and again at the airport. I started praying, please Lord let us be able to get on this flight! I surely didn’t have the money to change it again! Once we got on the flight she was okay and she ended up sleeping 95% of the way home. Once we landed and got our luggage, we spotted Steven in his truck because Montana was sticking his fluffy head out the window looking for us 🙂 that made my night (I’m borderline obsessed with my dog). Ellie was so happy to see her dad, sister and our plethora of animals!

 

 

Monday I will catch you up on the week after IVIG. It’s been up and down but I’ll explain it all.

 

Xo

lucy signature

  • March 19, 2017 - 1:16 pm

    Morgan - Lucy- I just want to say I really appreciate how open and honest you are about the process. I have a son and don’t have to face nearly any of these challenges (knock on wood) but it’s really refreshing to hear you speak of the “dark side” of being a parent and how hard it is for you sometimes dealing with PANDAS. I hope writing down your struggles and sharing them with the world brings you hope and support and other people let you know you aren’t alone. I’m praying for Ellie and your whole family.

    MorganReplyCancel

  • March 21, 2017 - 2:17 am

    Tiffany Haines - Hey! A friend told me about your blog. I just wanted to let you know that I wil be praying for you. I have three children. Two with PANDAS. I too saw Dr. L in December and my kids will get ivig in June. I live in the Huntersville area. I feel your pain and understand everything you have written. I’m also constantly researching. Praying she will be healed.ReplyCancel

  • March 24, 2017 - 1:35 am

    Sarah - Hi! I’m super sorry if you already posted this, but I’m new to your blog. I was wondering how you got on the track of IVIG? I was diagnosed with PANDAS in 2004 at the age of 5. I was placed on penicillin for several years, but I still have symptoms to this day. At this point, I am willing to anything as my symptoms are extremely severe; however, there are no doctors in my area with knowledge of PANDAS/PANS and do not have a lot of money for travel. Any advice would be great and i hope Ellie finds relief soon.ReplyCancel

There was so much anxiety leading up to our trip to DC for Ellie’s treatment. Will we have enough money to cover the entire treatment ($14,000)? What will I do if we spend all this money and it doesn’t work? Will she lose her mind when she finds out she has to get an IV? So, to calm my anxiety, over and over I repeated the verse, ‘Don’t be afraid, for I am with you. Don’t be discouraged, for I your God. I will strengthen you and help you. I will hold you up with my victorious right hand.’ Isaiah 41:10. I firmly believe in speaking truth and what you believe and want in life. So it was very important that I kept telling myself, God has healed my child. Everything is smooth and peaceful.

I knew the one thing I was looking forward to and my calming source, is my mom. She flew in from Florida to be there for us. I can’t even tell you how much comfort alone that gave me. She purchased plane tickets for Ellie and I to fly there since Ellie tends to flare every time we get in the car. Flying only 1 hour verses an 8 hour car ride turned out to be such a blessing.

 

Ellie and I arrived on Wednesday morning and we took a cab to our hotel, checked our bags and went walking around Georgetown. I really love that sweet little town, even if we were there for things that aren’t that fun! Ellie requested sushi so we ate sushi and enjoyed eachother’s company. We were waiting for my mom to fly in so we just walked around town. It was unusually warm (70 degrees) so it was the perfect day to walk around and explore.  My mom finally arrived and Ellie and I were both giddy to greet her! That night we went to dinner at Ellie’s favorite spot, Johnny Rockets 🙂 I am pretty sure she only claims it a favorite because of the delicious milk shakes, but who am I to argue. Ellie was bouncing off the walls, talking a mile a minute and feeling really anxious about tomorrow’s treatment. We reassured her but there is only so much you can say to a child who has extreme OCD and anxiety….

 

The next day we got ready and we looked like we were checking out of our hotel with the amount of stuff we were taking to get her infusion. I had purchased coloring books, markers, crafts and card games. She also took her blanket and “lovey” which she doesn’t go almost anywhere without lovey. We walked over to Dr. L’s office at 9:30 and the nurse wasn’t ready so we ended up coming back at 11:00am to get her started.  We walked around during that break to try and get Ellie distracted instead of sitting in a doctor’s office. We would walk a little bit and then she would break down in tears saying she didn’t want to do the treatment and she wasn’t going to, nor could I make her. This went on for the entire hour and a half of our little adventure break. We finally got her on board and up to Dr L’s office to get things started. The nurse came in and was looking at her arms trying to find a vein to start an IV. Well, I’ll be danged if she doesn’t have the worst veins in history and a complete phobia of needles….great combination. The nurse was having a really hard time trying to find a vein that would cooperate. Her veins are really deep and roll making them very difficult to get an IV started. She tried one spot, it didn’t work. Ellie was hysterical. She had to try another spot, it didn’t work. Ellie was still hysterical and I was starting to get upset. They bring the entire office staff basically in there to help me get her under control and still and Dr L had to administer the IV. After about 20 minutes of this, they got the IV in and started some fluids. Lord, that was a MESS! I was holding my breath and a wreck. Watching your child go through that is awful but I was relieved that she could keep that line in overnight and wouldn’t have to go through that again the next day for treatment.  We had another patient in the infusion room and he and Ellie became buddies. He was 4 years old and Ellie said she wanted to be really brave for him and she didn’t want him to see her cry. They ended up playing games, xbox and watching movies that whole day together.

One of the worst side effects of iViG is a severe headache and vomiting. In order to keep that under control, the key is TONS OF FLUIDS. My friend, JC gave me a good idea of a game to play with Ellie to keep her hydrated so that is what we did. Every 30 minutes, if she could drink 1/2 a gatorade/water or more, she would get a blow pop sucker. The game worked great and she stayed incredibly hydrated. The only downside was her needing to pee every 5 minutes. I told her she finally knows how I feel having to pee all the time ;).

One of the very reasons we chose Dr. L as her doctor was the experience she has with PANDAS, her reputation in the PANDAS community and also her success rate being higher than anyone else’s with iViG in these kids. Her concoction of medicine throughout the treatment apparently is different and has great results. I love that they started off and finished off the treatment with a bag of fluids to ensure proper hydration. Towards the end of treatment (which was 6 hours long) they gave Ellie a dose of steroids (Solumedrol). I was a little concerned because she wasn’t a candidate to take steroids for treatment because of her rage/suicidal thoughts/violent behavior so I didn’t know how she would do with this dose but I knew they knew what they were doing so I didn’t question it.

We finished treatment around 5:30 that evening and all Ellie wanted to do was go to the American Girl doll store. Considering all she had been through, I said sure we can go! Heck, if she would have asked for a pony at that point I think I would have said yes to anything! I felt terrible for the traumatizing experience she had with getting her IV (can you say mom guilt) but she was so brave and did amazing during her whole treatment. We ended up heading to the mall in VA (about 30 minutes away) to the AG store and we noticed in the cab she was quiet and calm. I was thinking it was probably because she was exhausted. We arrive at the store and walk around looking at all the dolls and accessories. The store is two stories and so they was a lot of stimulation. Normally Ellie would have been off the walls, jumping from one thing to another, asking for everything in the store and basically flipping out if I said no. She would have been so overstimulated it would have sent her into overdrive BUT TODAY SHE WASN’T! My mom and I kept looking at each other and quietly talking about Ellie’s behavior. We were really mesmerized. She calmly looked at each thing and took it all in and appreciated it. My mom ended up getting her a doll and she was so incredibly grateful she almost cried. A typical normal behavior would have been an attitude of nothing is ever enough…. Again, my mom and I were blown away at how different she was acting, in the best way possible. We went to eat dinner and the service ended up being a mess. It was late and once again, Ellie was such a joy to be around and so patient even though she was starving. She never got an attitude, never got upset and literally was just so fun and sweet. I started crying just being able to see glimpses off my girl coming back. I wasn’t expecting to see anything suddenly so this was the best surprise, I could not even believe it.

We went back to the hotel and all snuggled in bed. I got my mom hooked on my favorite show, ‘This is Us,” so we were catching her up watching episodes on her iPad. Ellie mentioned she was having a hard time breathing and her chest was going real fast. I felt her heart rate and it seemed extremely high. I was starting to get a little concerned but she ended up falling asleep anyway. I monitored her throughout the whole night making sure she was breathing normally and didn’t have a temperature. I didn’t have to wake her up for medicines, but gave her tylenol and zofran every 4-6 hours after treatment. We again pushed tons of fluid on her so she didn’t end up getting sick and thankfully we didn’t have any of the side effects that night.

Come back tomorrow for day 2….just when I thought most of my anxieties were eased because the hard part was over, I was wrong, very wrong….

xo,

lucy signature

I remember the smile that shined so bright. Her nose would squish up and she would let out this laugh that would melt my soul.

I remember her wild free spirit that coincided with that wild curly hair of hers.

I remember when she didn’t know a stranger and had the most friendly personality of anyoneI know.

I remember the friendly, funny, smart, vivacious little girl that was once my daughter.

In a sense I mourn her. I miss her.

I see little glimpses of her occasionally.

When my head hits the pillow and I close my eyes at night, I pray that the little girl I once knew will come back to me. Like I will wake up and none of this will actually be real, it was just a terrible nightmare.

I got her ready forthe daddy/daughter dance she had so been looking forward to this past Friday. We put her dress on.  Laced up her hand made sparkly high tops that we glued each stone on, one by one. Put my headband on her angelic hair she found from my wedding. Added blush on the apples of her cheeks and gloss on her perfectly pouty lips. She was excited and anxious to have her big night with her dad.

I took her outside to take pictures in the beautiful evening light. As she twirled around the chiffon of her dress was light and airy and simple. What a perfect metaphor for how life used to be… As I took pictures she smiled with insecurity seeping through. I occasionally got a laugh or a giggle.

There was one particular picture of Ellie tossing her head back, laughing and it was that one particular picture that gave me hope. I saw a glimpse of Ellie’s spirit reignite. It gave me hope that not all is lost and that this time is just a season we are experiencing. Maybe she will always have PANDAS but I pray we get it under control so that glimmer of hope becomes real and that this nightmare is few and far between.

Our moment of hope happens this week. Ellie goes for her first iViG treatment. We are so grateful we have the opportunity to get her treatment, thanks to the generosity of so many friends and family. We hope that only one treatment is necessary but we really don’t know. I feel like I don’t know anything anymore really. All I do know, is I don’t want to remember her, I want my Ellie back and I will do every single thing in my power to make that a reality.

Here is to hoping and big smiles and giggles.

xo,
lucy signature

  • March 10, 2017 - 3:23 am

    Monique Prato - I’ll be praying for you and Ellie. I hope the IVIG
    Treatment works! It worked within the 2nd day of treatment
    For us. Is is Amazing to hear your child say she is back.
    We just finished our 2nd treatment this weekend.
    And she is back again! We are heading to the beach for Spring Break!
    There is hope. Ellie will come back.
    And don’t be scared of IVIG. It’s been around so long.
    I do hope that she will be administered the high dose
    Which is 2 grams per kg of Ellie’s weight.
    Our doctor was going to do low dose, but I asked her to do high and she did, both times.
    I love the shirts I am going to get one for my daughter. She of course wanted-her name on it 🙂 she wants to wear it to school.
    You are very creative. It’s shows in every aspect of your life that you share.
    You have a true gift. Thanks for sharing your story. I have been wanting to do the same. But computers and me 😧
    Prayers 😇🙏🏻 God will bring your baby back!ReplyCancel

  • April 11, 2017 - 1:57 am

    Claire Garstka-Calhoun - Thank you for sharing. I too mourn for my son and I like e for those moments of the old Sam. They are so precious. Hold tight momma I believe with all my heart that’s God has got our babies in the plan of his hand.ReplyCancel