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.
