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PANDAS treatment day one

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,

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