Masthead header

PANDAS treatment day two

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

Your email is never published or shared. Required fields are marked *

*

*