Way past time for a PANDAS update

 Somehow more than 6 months have gone by without an update on how Sam has been doing. I was going to update after her Rheumatologist appointment in February, but I was afraid. Then again in May, but I was afraid to somehow jinx our girl. 

My last update was in October. Since then Sam has had some ups and downs, but has mostly been doing well! She has been playing, growing, going to school and playing sports again. 

We spent the week before Christmas at our favorite place and enjoyed the holidays at home with family. 

She had a Rheumatologist appointment in February. Saw her doctor and had imaging done. So excited she showed no evidence of JIA and was officially in remission from active arthritis disease!  

With her doing so well the decision was made to take her off of her maintenance medicine she had been on for 9 months. It can affect your kidneys and we knew they needed a little time off too. We tapered her off and held our breath. She was so excited to not have to take it, but also scared of what may happen. That made two of us! She did really well without any issues. She continued with school, daily activities and being an active 10 year old.

I was going to post about it, but again, I was afraid as soon as I said she was fine, she wouldn’t be. So silly the mind of a person with OCD. 

Meanwhile, she fell and broke her arm. Then she had an abscess form on her leg that had to be drained, followed by a terrible rash from the antibiotics she was on for the abscess. Poor thing! She was a trooper through it all. She even started her softball season in her cast! 

 

In May we had another follow up with Rheumatology. Dr. Schulert was again amazed with Sam’s progress. We told him how great she has been going off of her meds and that she has been playing softball and volleyball. Doing well in school and her happy self. 

The next day Sam woke up and was off. Not a lot, just a little more irritated and moving a little slower. The following day she was not wanting to go to school. Saturday she struck out at her game because she was afraid to run, then cried and left the game. We talked that night and she broke down so scared it was all happening again. I assured her we were not going to let that happen. We had Dr. Schulert and medicine to help. Sunday she woke up with a fever and it all made sense. She was coming down with something and her immune system just went haywire. PANDAS is sneaky like that. We started her on her meds again and Monday she stayed home to rest. Tuesday she was back to school, but nervous to leave and about the stairs. It was like dejavu. Wednesday she woke up excited for school. Thursday she was dancing and back to herself. Friday she was on the softball field. PRAISE THE LORD the naproxen had worked! It worked fast. Within the week she was back to herself. We took Dr. Shulert’s advice and had her stay on it for 10 days. We now know when she is sick this may happen. 

This is part of Autoimmune disorders in general and PANDAS doesn’t mess around. We know she may have a flare again and now we know the signs and what to do. 

I hate that she has to deal with all of these things, but I am so proud of her grit and desire to get better. She used to fight medicine, this time she knew it would help and she asked for it.

 

When she was in the flare she said- this sucks and isn’t fair. I’m a kid. I told her I would take away all of the issues in a second if I could, but she has to deal with it. It is a lot to deal with, but she is more than her diagnosis. She is more than the flare. JIA and PANDAS are not who she is, they are just a part of her life. She is so much more. Even through the trials and medical issues she is taller, stronger, sassier and all around a better human! Almost 5’2 at her last appointment at 10 years old. 

The difference from the last day of 3rd and 4th grade 

There are parts of life we don’t want to have to deal with, but we will be proactive and positive and make sure we are always advocating. We will continue to see Rheumatology every few months and need to schedule and eye appointment this summer. Stay off the meds, unless we need them. We are enjoying every minute of the sunshine, exploring the city we live in and looking forward to a great summer. 

Here is to all of the activities and fun we can fit into our days! 

Prayers for a summer of health, happiness and lots of sunshine.