Friday. 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.
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 even 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.
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….
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.
My 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….
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….
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.
I 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.
Montana, our therapy dog
the battle everyday of Ellie taking her medicine. everyday.
Ellie with her new tutor, Mr. Willis, whom she loves!
the 45 minute long process of begging Ellie to just take her medicine every night.
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
the silicone bracelets for sale in the shop