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. 

Just mama

Some nights it seems 

You need me more than others 

When you wake and cry out

Needing more than just a binky

Needing the touch 

The snuggle of mama

If only every bad thing 

That ever comes your way

Could be eased with a touch

Soothed with you simply in my arms

Some nights it is once 

Some nights it is ten times

I feel blessed 

Each time I hear you 

I am thankful

Each time I run in to check on you

As I hold you

As I feel the weight of your tired body 

I know what a gift you are

I realize that these moments

will not last forever 

I am grateful for this time 

When mama is all you need 

You have time to grow 

Someday you will need so much more 

But, for now I am so happy

To be the one thing you want

The one thing you need  

Just mama