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! 

PANDAS Awareness Day

 In honor of PANDAS awareness week next week I have condensed Sam’s story and I want to share it so others know the symptoms! So they know to keep searching for answers. 

This rare diseases isn’t as rare as you may think! It is just rarely diagnosed as it is not acknowledged in the medical community. Our children are suffering. How many kids diagnosed with developmental delays, autism, adhd, mental health issues and more could have brain inflammation? 

Anxiety doesn’t happen overnight! 

Extreme food changes do not happen overnight! 

OCD doesn’t happen overnight! 

 No one knows your child better than you do. If you think something is wrong, trust your gut. 

Advocate like a Mother! 

Samantha Grace

In late November of 2023 we started to notice our daughter, Sammi, had a limp. The next week she began acting very tired and sick. We took her to the hospital they ran some tests, she thankfully was fine. That was the first day I questioned a diagnosis. In the days that followed she became riddled with anxiety. She cried in fear of leaving the house, going to sports practice, going to school. She began walking with an abnormal gate and said it was fear of getting hurt, not pain, that was causing it. She became fearful of eating. We made multiple trips to the pediatrician. She was told to go to a counselor for anxiety. Things got worse. She went to the counselor who suggested occupational therapy. Things got worse. She lost the ability to run, jump, navigate stairs. She had to lift her legs with her hands to get in and out of the car and bed. She refused to eat. Crying for 35 minutes being forced to eat a small piece of cheese. Terrified of stores, restaurants, strangers and even people she has known. We had to force her off of her safe space on the couch to do laps around our house to move her body. She was stiff and so thin. She was a shell of herself physically and mentally. She had nighttime accidents after 8 years of no issues. She cried each morning disappointed she woke up feeling the same. After months of occupational therapy and fighting for answers. We needed more. I always questioned PANDAS. I was always brushed off. Being told by her pediatrician that I needed help for my anxiety. That there was nothing physically wrong with her and I was making it worse. We got a referral for Neurology and Rheumatology. Thankfully we found an open minded Rheumatologist who ordered blood work. The first sign that this was not a mental health issue. Her inflammatory numbers were through the roof. The poor child’s brain and body had been fighting for months. She had lost 20lbs, lost 7 months to this relentless Hell she was stuck in. He put her on Naproxen. Within a week she was eating. Within 2 weeks she was walking normally. She ordered at restaurants, went to friends houses, jumped on trampolines! When we went to the follow up with Rheum the doctor said he would not have believed it was the same child had he not seen her before. She was back. With our knowledge of her inflammation and symptoms, mom was fighting for what I had known all along. We found an incredible NP who has done more bloodwork and officially diagnosed her with PANDAS. Seems even though she had never in her life tested positive for Strep, the virus was in her bloodstream. The final piece of the puzzle.  She has been diagnosed with Juvenile Arthritis as the Rheum thinks whatever “it” was settled in her knee.  She has continued on Naproxen twice a day for 6 months now. She has had some food issues, knee swelling, mouth sores and a few trials; but she is thriving! We have more blood work ordered and a recheck with Rheum this month. Sam had to be picked up at the office because she could barely walk last year. She started 4th grade walking to and from school. She missed out on sports,gym class and playing on recess last year. This year she is back playing soccer and enjoying gym. Last year she couldn’t walk the stairs at school, couldn’t get in and out of the car or sit on the ground. In June she celebrated her healing by walking at Disney World. There was a time a few months back I wasn’t sure we would ever be able to do Disney again without a wheel chair.  She is a warrior! I hate to even think where she would be if I hadn’t known about PANDAS. We are so thankful for the progress she has made and pray for continued treatment and healing for our girl. 

These 4 pictures span only 8 months. November 2023, January 2024, April 2024 and July 2024