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. 

. .

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. 

Sam’s journey update! A special Graduation

 As I sat in my car overlooking the windows to ABC Pediatric therapy I was overcome with emotion. Six months ago we walked through the doors with our frail, sickly daughter who feared everything.

When Sam started OT in January she couldn’t function. After a month of low grade fevers, leg pain and exhaustion she started with new symptoms.  

 . She was paralyzed with fear, unable to eat, unable to walk or move freely. She had lost the ability to run, jump and walk normally. Terrified of stores, restaurants and strangers. She lacked the ability to walk up stairs and would freeze with fear attempting to go down them. She couldn’t sleep alone and seldom was able to be alone at all.

 She struggled with touch and noises. She lost her balance easily and was unsteady. She was a shell of herself And spent most of her time in one single spot on the couch. 

Occupational Therapy was recommended by her therapist who saw what she was dealing with was much more than anxiety.  Meeting her OT , Sarah, changed so much for our family. As an Occupational Therapist her goal was to help Sam retrain her brain and muscles, while allowing her to play. For our family she gave us hope, searched for answers and always made things the best they could be for Sam. 

In the beginning of this journey they worked on sensory skills, moving past fears and using her body. For a few weeks she brought her stuffed animals and mom. For a few months mom went back and eventually she went back on her own. She worked on her balance, her muscles, her tactile sensory skills.

When we started Sam couldn’t sit on the floor. For weeks Sarah helped her gain the confidence to sit on the floor and get up using games and toys. She never rushed her, never made her uncomfortable and always was a positive light in such a terrible situation. 

For Four months Sam came twice a week and then the last few months once a week. January through June working hard to get back. 

OT has become a safe space for Sam throughout all of the trials the last year. Even with getting better and then getting much worse again, therapy was something she looked forward to weekly. With multiple specialists visits at the hospital and never finding an actual diagnosis, Sarah has always been proactive and helped explain the parts of OT and how it would help Sam. When we found Sam had very high inflammation markers, swollen knees  and needed Naproxen to help her Sarah was supportive and continued to keep Sam moving forward. 

Sam has come happily and confidently each step of the way.  It has been so rewarding watching the changes and successes she has accomplished. It has means more than I could ever explain.

Occupational Therapy was the service that Sam went to ABC Pediatric Therapy for, but she got so much more than that. She found herself again. She trusted a stranger when she didn’t even trust herself. She formed a relationship that I have promised her we won’t let go.

 

Today she walked into her once a week OT for the last time. 

She and I both can’t help but to be a little sad. This place has become a second home to Sam and she absolutely loves all of the therapists she has come into contact with each week. She has gone from her lowest low to now her highest high with the help of Sarah. There have been multiple doctors, specialists, medications and therapists involved in her journey but, Sarah has made her feel heard. She has been a safe space, her happy place and a part of her life that created a positive spot even on her hardest days. 

As a mom, I will be forever grateful for having someone listen to me. When I was scared and things were so unknown, she listened. She researched and searched for answers. We worked together to help Sam the best we could. 

37 therapy appointments. 

Now today is Graduation.

The end of a chapter we never imagined would be part of our lives. 

Sam may come back for sessions this fall to help her through changes or God forbid setbacks. 

Regardless we know Sarah is stuck with us forever. So grateful for this therapy office right down the street that we never really noticed before. 

Life is tough, but this girl is tougher. 

So proud of our girl and all that she has battled through and accomplished. 

She is back. 

She is running, jumping, swimming and 100% her sassafras self. 

 

Outgoing, friendly, full of energy and a complete goofball. We are so incredibly thankful everyday to have our Sam back. For awhile we were scared we would never see her again and count our blessings every single day. 

She has bloodwork, ultrasound, eye appointments and her Rheumatology appointment coming up as well as an appointment at Linder center with a doctor who acknowledges PANS and PANDAS tomorrow. Please keep the prayers coming. 

Big Steps Forward

 Wanted to post an update on Sam’s journey with Functional Neurological Disorder. This girl is a fighter and has been resilient and brave with each step.

She has continued going to OT twice a week and working hard at home. She loves her OT Sarah and reached a big milestone last week of going back on her own with Sarah for therapy. Throughout this journey having me along has helped her to be successful and we knew it was important for her to gain the independence and confidence to go back with just Sarah. Last Friday she did it! 

She has been doing really well at school. This week her friend’s mom took her to school two mornings! This was a huge accomplishment coming from where we were a month ago too! She has been able to jump on the trampoline at therapy and has been climbing and using her body more! Things that used to come naturally are now major wins! She has been working so hard. 

Today she had her PT evaluation with Miss Shelby. She worked so hard and used a lot of muscles! Miss Shelby is confident she can help her get her strength, coordination and muscle movement back again. She will start going to PT weekly.

 

 Her goal is to get back on the soccer field again. She just wants to be able to run again! 

  

Throughout all of these trials, Sam has been such a hard worker. We are so thankful that for the last month we have seen her shine again and she has been her kind, funny and silly self. Now we just have to get her body where she can use it as she wants again!

 

She has a lot of work ahead of her still. Now 3 days a week of therapy, sessions with children’s and pediatricians. She is determined and she will get there!

! Praying for strength and perseverance for our girl!