Heading in the right direction!

 Today Sam had her follow up with Cincinnati Children’s Rheumatology. She had bloodwork earlier this week and was pretty nervous. Dr. Schulert was as wonderful as ever and immediately set her (and I) at ease. He said her bloodwork is continuing to trend in the right direction. 

Her Sed Rate is nearly a quarter of where it was in April and her CRP is back to normal!!! Huge win for the inflammation numbers. She is a little anemic, but almost all of her bloodwork had improved. 

He checked her joints and range of motion and said she looked even better than in July. Her knee swelling is completely gone. 

As she danced and sang through the appointment he said he still is in awe that Naproxen has helped her the way it has so far. Seeing the sick shell she was in April, now back to her perfect curve on the growth chart and full of sass and fun. 

Thankfully at this point he is happy with how the current meds are working. Her kidneys are in great shape and she isn’t having any side effects. So we will stay on twice a day naproxen. He had thought about taking her down to once a day, but I brought up the concern of not knowing what caused it and the fear of going backwards. He has been amazing at listening to my concerns and acknowledging Pandas without ever mentioning it. She has an eye appointment in November to make sure the Inflammation isn’t effecting her eyes and if that is all good we can avoid changing to the Arthritis medicine for the next few months. 

He said the type of Juvenile Arthritis she has and the way she is trending she could go into remission at some point by the time she is an adult. 

She will have repeat lab work and an ultrasound in 4 months and visit with Dr. Schulert again. Overall it was a great visit and we are so thankful for her continued health and all she is able to do again. 

She has a few more goals to reach, like getting her leprechaun kick back and getting her speed back. But, this girl has come so far and is so brave! Looking at her lab work trends and seeing how sick she was and knowing how that had effected everything is hard to hear. The memories of what she has been through and continued medicine and appointments are hard on her. I am so proud of her tenacity and her continuing to push herself each day. 

She is o happy this appointment and bloodwork are over! Now on to Soccer tournaments, volleyball and the school Christmas play! So much to look forward to! 

Keep moving forward … Sam

 The last few weeks have been a bit of a whirlwind. While we have had a lot of life going on for our family, we have had some stuff going on for Sam as well and she has had a few important appointments. Three weeks ago we met with a psychologist at Lindner Center of Hope. She had just come home from a national convention studying Inflammatory Encephalitis and PANDAS. We told her Sam’s story and she saw her bloodwork from April. She said she was surprised Sam hadn’t been hospitalized back then when her numbers were so high. She said every single symptom she has had is a symptom of PANDAS. We discussed Children’s not diagnosing or treating it as well. She added a panel of bloodwork to Sam’s orders from Rheumatology to check for strep titers. A strep infection would be the one missing piece to a full PANDAS diagnosis. Sam has never in her life tested positive for Strep. 

Her bloodwork came back with positive strep titers for past infection. The piece we need for an official diagnosis of PANDAS. Mom isn’t crazy. Mom was right. Never doubt your intuition and never back down for your kids. Even if your pediatrician tells you that you need therapy and you worry too much, trust your gut and Push for answers! We now have a doctor who will treat if she flares again and knowledge to guide us.  

I have found an amazing support from Pandas Network and Sam was able to be a part of a study to find out why some kids get this debilitating autoimmune response. 

Still, Cincinnati Children’s doesn’t recognize or treat and her doc at Lindner wanted to make sure there wasn’t something else we missed. So, her Rheumatology appointment was  today. She saw Dr. Schulert and Dr. Vega. 

There was good news and not so good news. 

The good news is her inflammation numbers are down, like half of what they were in April! Her symptoms have almost completely disappeared. She has grown 3/4 of an inch and gained 20 lbs!! She is now 2 lbs up from where she was before she got sick! Back on her growth chart in perfect size again. She popped her knee a few days ago, so hasn’t run in a few days, but otherwise is swimming, playing and back to herself. This picture shows the difference from April to this week. 

The not so good news. Her inflammatory markers aren’t normal. So something is still going on. They did an ultrasound and she still has thickening of her knee and a small amount of fluid. She will stay on naproxen twice a day for three more months and has officially been diagnosed with Juvenile Idiopathic Arthritis. Thankfully it seems contained to one joint. He still thinks it probably came from whatever started all of this back in November.

 

He noted he saw the other bloodwork and acknowledged our PANDAS, but of course won’t treat or really document that through Rheum. We trust Dr. Schulert and are so thankful to have him on Sam’s team. From the start he has looked for answers, listened and been a great communicator. His bedside manner and care have been phenomenal and we are happy to have both Lindner and Children’s watching her closely. 

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She will go back to see Dr. Schulert and repeat bloodwork in 3 months. Dr. Vega will repeat the ultrasound as well. If she has fluid or thickening they will discuss how to further treat the JA. This would be a steroid shot under anesthesia or a weekly medication. Tj and I have already discussed we would do the medication as it would treat her autoimmune illness as a whole body, not just the one joint. 

Months ago we were so lost and in a state of turmoil. Today we have our girl back and we have two diagnoses.  Two autoimmune diseases- Juvenile Idiopathic Arthritis and PANDAS. 

It was a lot to take in, but we will take this as a positive. Praying for continued healing. Symptoms to stay far away and for Naproxen to continue to take away her inflammation. She has come so far and we are so incredibly proud of our girl. 

She is stepping into her sister’s shoes and representing the hospital now. She is excited for new beginnings. 

This girl has grit and she is a brave fighter. Keep the prayers coming please. 

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.