Long update 💗Rheumatologist follow up

 It has been nearly a month since my last update on Sam. Last month she was at near her worst with her ataxia, anxiety, OCD  and restrictive eating. As of her Rheumatologist appointment she was down 14 lbs on her already small frame. 

Both Neurology and Rheumatology agree that this is not FND, which we had originally thought. The neurologist said her gait looked more like an FND ataxia, but having high inflammation markers and the fluid on her knees show us there is more going on. Being released from Neurology and hoping to work towards a diagnosis with Rheumatology, this makes sense. 

Her Rheumatologist was concerned with her knees being swollen and ordered a 10 point ultrasound and twice a day naproxen. He also ordered 9 blood tests. As the bloodwork came in, it was quickly seen her inflammatory markers were very high. Her sed rate, crp and many markers showed ongoing inflammation that had been happening for months. Having inflammation in her body made some sense with all of her symptoms over the last 6 months. 

Within a week of her taking the Naproxen we began to see changes. She asked for food for the first time in months. She requested snacks between meals. Asked me to make cookies. Ate her meals without issue. She began trying things at restaurants that a month before she couldn’t even walk inside and refused to eat. 

She was able to go into stores again, talk to strangers and even order herself in restaurants. She went up to her room on her own and played with her dolls again. She even asked for friends to come over and went to their houses as well.  Things she hadn’t done in months. 

She began moving her body more. Her legs which had remained stiff and bent for months relaxed. She spent time stretching and practicing her “flips” on the couch over and over. She realized she had strength in her legs, that she had been terrified to use for so long. 

She started walking with a little more ease and navigating the stairs. 

As time went on while on the Anti inflammatory she showed me she could walk upstairs without holding on. Two days ago she walked with a normal gait. Yesterday she tried to run, her first attempt since December! 

She has asked to go to the park and has been climbing, swinging and regaining her strength. 

In late January we had seen so much improvement, before her regression, but the things she has done now are far greater and more like herself than we even saw back then. 

Last week Papa went with us for her ultrasound. She was so incredibly brave and asked questions throughout the whole procedure. We were so lucky to have a doctor who has literally written the papers on ultrasound technology being used for diagnosis of Juvenile Arthritis. We have been told she is one of the only doctors in the country who has research funding to better the use of ultrasound for juvenile arthritis. She was so kind and knowledgeable and the entire experience was positive. 

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Today we had an appointment with the Rheumatologist Physical Therapist and a follow up with her Rheumatologist. When we arrived at PT we knew that her level of strength, coordination and flexibility was far beyond what had been reported in the previous month. The PT was pleasantly surprised to see all she was capable of doing. 

Her ankle and hamstring are still a little tight, but she was able to pass every “test” with flying colors. She even ran down the hallway! This is a skill she is working so hard to get back! 

After PT she had her follow up with Dr. Schulert in Rheumatology. We have been waiting for this one and we were nervous to hear his thoughts on everything. When he walked in the room he immediately noticed the change in her demeanor over the last month. Her sass, her personality and her whole demeanor have changed. She was moving freely and speaking with ease with both he and his resident. He went over the test results and once again explained the inflammation markers, how some showed long term inflammation and the ultrasound had still shown some thickening of the joint and fluid. He said he had planned to come in and diagnose her with Juvenile Arthritis. He planned to have a procedure scheduled to drain her knee and start her on medication for JA, but he couldn’t believe his eyes. He said he has rarely had a patient respond to NSAIDs and never had a patient resound like she has over the last month. He said he never expected to see half of the improvement and wouldn’t believe it if he hadn’t seen it himself.

 We asked some questions and he believes that back in December she had some type of infection or virus. Her immune system responded by attacking itself. Her inflammation continued to get worse and settled in her knee. Often this is how JA starts, but it doesn’t get better like she had. As he felt her knee he said he couldn’t feel any fluid. The swelling had significantly gone down. We told him that all of her symptoms have nearly disappeared with this medicine and he told us she has gained 7 lbs back!!! She is healthier and happier than we have seen her since November. He understood our worry of how this could have started, but said so often in Rheum there aren’t answers. This time we have a way to treat her that worked, so we agreed that we don’t need to know the cause right now as long as she has better. 

It was a 40 minute appointment and he continued to say how he just couldn’t believe her progress and how much she has healed. I told him she has been praying to Saint Gemma, so maybe her prayers and Naproxen were the magic combination. Or that maybe he was just a miracle worker. He said he wants to bottle whatever it is up because this appointment and her getting better were something he almost never sees. 

She will continue on the Naproxen and follow up again with more bloodwork, and ultrasound and seeing him in July. We pray that we continue to see our girl as herself and she continues to get and stay better. This has been quite the rollercoaster ride and relapse or regression are always concerning. But, for now she is doing better than we could have imagined on her medicine and we hope the follow up shows no fluid or inflammation. If it does, we will probably face a diagnosis of JA. If she continues to heal and progress as she is now, her inflammation and fluid are gone they will taper her off of Naproxen and go from there moving forwards. 

I’m still pretty convinced that all of this is PANS, but we don’t need a diagnosis, we just need a way to fix it! We got that with her current medication and pray it continues. Dr. Schulert believes it is autoimmune, but may never know a cause and it may not have a name. As long as it has a cure, that is all we have needed.

So today was an Awesome Day! When your progress is so astounding you surprise a specialist it is a good day!! Please continue to keep our girl in your prayers. Pray for continued healing. Continued learning in her weekly OT and continued positive progress.