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

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. 

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. 

Long update 💗Rheumatologist follow up

 It has been nearly a month since my last update on Sam. Last month she was at near her worst with her ataxia, anxiety, OCD  and restrictive eating. As of her Rheumatologist appointment she was down 14 lbs on her already small frame. 

Both Neurology and Rheumatology agree that this is not FND, which we had originally thought. The neurologist said her gait looked more like an FND ataxia, but having high inflammation markers and the fluid on her knees show us there is more going on. Being released from Neurology and hoping to work towards a diagnosis with Rheumatology, this makes sense. 

Her Rheumatologist was concerned with her knees being swollen and ordered a 10 point ultrasound and twice a day naproxen. He also ordered 9 blood tests. As the bloodwork came in, it was quickly seen her inflammatory markers were very high. Her sed rate, crp and many markers showed ongoing inflammation that had been happening for months. Having inflammation in her body made some sense with all of her symptoms over the last 6 months. 

Within a week of her taking the Naproxen we began to see changes. She asked for food for the first time in months. She requested snacks between meals. Asked me to make cookies. Ate her meals without issue. She began trying things at restaurants that a month before she couldn’t even walk inside and refused to eat. 

She was able to go into stores again, talk to strangers and even order herself in restaurants. She went up to her room on her own and played with her dolls again. She even asked for friends to come over and went to their houses as well.  Things she hadn’t done in months. 

She began moving her body more. Her legs which had remained stiff and bent for months relaxed. She spent time stretching and practicing her “flips” on the couch over and over. She realized she had strength in her legs, that she had been terrified to use for so long. 

She started walking with a little more ease and navigating the stairs. 

As time went on while on the Anti inflammatory she showed me she could walk upstairs without holding on. Two days ago she walked with a normal gait. Yesterday she tried to run, her first attempt since December! 

She has asked to go to the park and has been climbing, swinging and regaining her strength. 

In late January we had seen so much improvement, before her regression, but the things she has done now are far greater and more like herself than we even saw back then. 

Last week Papa went with us for her ultrasound. She was so incredibly brave and asked questions throughout the whole procedure. We were so lucky to have a doctor who has literally written the papers on ultrasound technology being used for diagnosis of Juvenile Arthritis. We have been told she is one of the only doctors in the country who has research funding to better the use of ultrasound for juvenile arthritis. She was so kind and knowledgeable and the entire experience was positive. 

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Today we had an appointment with the Rheumatologist Physical Therapist and a follow up with her Rheumatologist. When we arrived at PT we knew that her level of strength, coordination and flexibility was far beyond what had been reported in the previous month. The PT was pleasantly surprised to see all she was capable of doing. 

Her ankle and hamstring are still a little tight, but she was able to pass every “test” with flying colors. She even ran down the hallway! This is a skill she is working so hard to get back! 

After PT she had her follow up with Dr. Schulert in Rheumatology. We have been waiting for this one and we were nervous to hear his thoughts on everything. When he walked in the room he immediately noticed the change in her demeanor over the last month. Her sass, her personality and her whole demeanor have changed. She was moving freely and speaking with ease with both he and his resident. He went over the test results and once again explained the inflammation markers, how some showed long term inflammation and the ultrasound had still shown some thickening of the joint and fluid. He said he had planned to come in and diagnose her with Juvenile Arthritis. He planned to have a procedure scheduled to drain her knee and start her on medication for JA, but he couldn’t believe his eyes. He said he has rarely had a patient respond to NSAIDs and never had a patient resound like she has over the last month. He said he never expected to see half of the improvement and wouldn’t believe it if he hadn’t seen it himself.

 We asked some questions and he believes that back in December she had some type of infection or virus. Her immune system responded by attacking itself. Her inflammation continued to get worse and settled in her knee. Often this is how JA starts, but it doesn’t get better like she had. As he felt her knee he said he couldn’t feel any fluid. The swelling had significantly gone down. We told him that all of her symptoms have nearly disappeared with this medicine and he told us she has gained 7 lbs back!!! She is healthier and happier than we have seen her since November. He understood our worry of how this could have started, but said so often in Rheum there aren’t answers. This time we have a way to treat her that worked, so we agreed that we don’t need to know the cause right now as long as she has better. 

It was a 40 minute appointment and he continued to say how he just couldn’t believe her progress and how much she has healed. I told him she has been praying to Saint Gemma, so maybe her prayers and Naproxen were the magic combination. Or that maybe he was just a miracle worker. He said he wants to bottle whatever it is up because this appointment and her getting better were something he almost never sees. 

She will continue on the Naproxen and follow up again with more bloodwork, and ultrasound and seeing him in July. We pray that we continue to see our girl as herself and she continues to get and stay better. This has been quite the rollercoaster ride and relapse or regression are always concerning. But, for now she is doing better than we could have imagined on her medicine and we hope the follow up shows no fluid or inflammation. If it does, we will probably face a diagnosis of JA. If she continues to heal and progress as she is now, her inflammation and fluid are gone they will taper her off of Naproxen and go from there moving forwards. 

I’m still pretty convinced that all of this is PANS, but we don’t need a diagnosis, we just need a way to fix it! We got that with her current medication and pray it continues. Dr. Schulert believes it is autoimmune, but may never know a cause and it may not have a name. As long as it has a cure, that is all we have needed.

So today was an Awesome Day! When your progress is so astounding you surprise a specialist it is a good day!! Please continue to keep our girl in your prayers. Pray for continued healing. Continued learning in her weekly OT and continued positive progress. 

fear

 Fear. 

Fear and control. 

I try to control things to ease my fear.

My fear controls me, because I have no control.

 It’s an ongoing battle. For as long as I can remember. Making sure I do something a certain way, to prevent it from happening. I’m 43 years old and I’ve never had a drum stick. I’ve never used a glass measuring bowl. My brothers last thing he ate and what he was sick in the day he got sick.  It was a rule at our house, made sense to me. 

It still makes sense. I mean I know it is crazy, that we don’t have that much control, but what if we chanced it? 

Fear. 

Control. 

I have one because I lack the other. 

I live in fear. 

Fear of death.

Fear of cancer.

 Fear of the worst case scenario. 

So I do stupid things like pass up a balloon for a gift because I’m convinced someone may die. I refuse to type or say the words cancer free because I am afraid I will jinx myself into having cancer somewhere else. As thankful as I am to get to go to the survivor clinic. These words terrify me. What if I’m not a survivor and cancer is lurking hidden in my body. A fear I have had as long as I can remember. 

I’m afraid that I worry too much. I’m afraid if I don’t worry something worse will happen. People have told me not to worry about things, then things went wrong. 

I am right a lot about things I should fear. 

Pregnancies ending with funerals instead of baby showers. Infections in knees, abscesses in eyes, moles being cancer. Autoimmune diseases masking as anxiety. 

There is a fine line between intuition and feared obsession. Between advocate and worry wart. 

When the worst cases have become reality how do you not worry? 

Some years are tough. Some months feel like if one more thing drops I may lose it. 

But, so far I haven’t completely lost it. I’ve found the strength when I didn’t think I had any left. I’ve found the peace when I didn’t think it existed anymore. I’ve found the bravery when I was terrified. 

I will keep doing it. 

Maybe someday I’ll find someone to talk to who can help me with whatever the laundry list of anxiety induced mental health issues I probably have swirling in me head, maybe not. 

When I was in high school I wrote to let my fears out. Have my feelings on paper so they couldn’t control me anymore. 

Tonight I sat down and decided I couldn’t take the fear. I needed to let it out. 

I will be an advocate. I will research, ask questions and never back down. Fear will always be a part of me, but I will not let it be who I am. 

Need a Spring break redo - Sam update

 It’s been about 2 1/2 weeks since I posted an update on Sam. There has actually been a lot happening in that amount of time. Her anxiety, weight and gait have all continued to suffer. She was going to school, but struggling with doing outside activities and going to stores again.

She was barely eating and we were making meals and protein happen. Her school had a fun day and she was unable to get up off of the ground and spent some of the day in tears.

  

Just heartbreaking. Her gait was so off again that we could see the pressure being put on her right knee and knew it was making things worse. She was afraid to move her legs and kept them so stiff. 

 

She continued with OT and went back to many of the things she had started on many weeks before. Like the regression just bumped her back to start. PT went from using new muscles and gaining strength to slow bends and massaging muscles. 

We figured out that the regression started shortly after her first PT session. Her hamstrings were tight and hurt, which caused her to think something was wrong and she immediately shut down. She was almost walking normally in early March and then bam, back to this horrible stiff stomp. 

Knowing we needed to work towards an FND diagnosis from Neurology we had that appointment set, but I decided I wanted Rheumatology to see her too. Our pediatrician had sent a referral back in December. Telling me “there is nothing wrong with her, but your piece of mind I will send the referral”. Trusting her guidance we never made the appointment. A few weeks ago I decided no matter what the ped thought we were going. 

We saw Rheumatology on Tuesday. The doctor was very nice, thorough and asked a lot of questions. He was concerned enough with her symptoms and her knees being somewhat swollen. Her legs are so incredibly thin don’t help them to look “normal”.

  

They did ultrasounds on her knees and a ton of bloodwork. He was looking for some main markers to point out anything Autoimmune. He has a couple of ideas of what he thinks it could be and put her on Naproxen twice a day for her knees. The blood work has slowly come back in and so far showing very high for inflammation in her body. Something is going on with our girl, now to figure out how to fix it! I spoke with the doc a few days ago and he explained what has come in and is still waiting on the rest. We are waiting Lyme testing and still have to get a poo sample in to be tested! She has been going at times we don’t have the kit! Once we get that back he will know more and where to go from here. 

In the two days she has been on Naproxen we have noticed a difference in her anxiety level and she has been eating better. We aren’t sure if it has to do with reducing inflammation in her body or just coincidence, but we will take it. 

Rheum asked us to cancel PT for now as her knee has fluid on it. So we have cancelled this sessions and she had OT. She was able to go back on her own and work hard again. 

Today we had an Appointment with Neurology. He did all of the neurological testing on her and asked many questions. He said that her testing looked great and her strength as well. The things she struggled with had to do with her knee and legs, not from a neurological standpoint. He said to await Rheum results and follow up with them and he wouldn’t need to see her beyond this appointment. He agreed that her gait looked like more of a FND movement than a neurological ataxia, which was great to hear. He also referred us to Cognitive Behavioral  Therapy, which was one of our goals if this appointment.

I asked him about my number one concern from the beginning. He did not discount it and agreed she has the two major issues that are seen with it. Overall, we were very happy with both visits this week and the doctors she saw. 

So as we wait and pray…

Mom looks back at everything that has happened. Researches, looks through old videos and pictures, thankful for my blogging i look back at the past few months and I come back to the same thing. 

From the week she got sick I thought she had PANS/PANDAS. 

As a mama with medical anxiety I know about extreme weird things to look out for and I was well aware of this condition. Her symptoms have matched up all along. I asked her pediatrician who told me point blank it was not this, because she tested negative for strep on a rapid test. 

She had a sudden onset of symptoms following a fever and virus. 

She has lost 14 lbs because of avoidant restrictions with her food. 

She has had debilitating anxiety. 

She has become obsessed with her legs, fearing being hurt and controlling those things. 

She has heightened sensory issues. 

She has an abnormal gait and swollen joints. 

She has high inflammation markers, without a diagnosis or reason at this point.

She fits the mold. 

As we anxiously await results and next steps from Rheumatology, we search for answers. If something comes back and there is a treatment plan and diagnosis we are ready to start that and to help get our girl back to herself. We have an appointment with Teen Health and the eating disorder clinic and hope to get into Cognitive behavior therapy soon. If we don’t get answers and a plan, mom is planning out the steps on where we go next. 

I asked on Facebook, where every mama goes for information, and I have found some amazing resources in other moms who have fought for their kids to get treatment and get better. 

Praying for answers, praying for healing and praying for our sweet girl who had to spend her spring break going to the hospital. 

Advocating like a mother is my job, and I’m not ever backing down!