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.