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! 

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! 

Few more steps back for Sam

 I have kind of been hesitating to post an update on Sam. It seemed we were on a good track and she was doing better, until she wasn’t. 

Last week was a full moon. She had 4 appointments 4 days in a row and it was Emma’s birthday and Tom’s anniversary. So, it may have been a perfect storm of stress and sadness. 

Sam has still been working so hard. Now adding Physical therapy to occupational therapy each week, as well as daily exercises at home. She has seen her therapist, Kate, and Dr. Holmes. She was doing much better physically, being able to do things at OT she hadn’t. She was doing better with her fears as well. In the last two weeks her gait is off a lot again. Navigating the stairs has been more difficult, General fear and not eating have all come back with vengeance. We have tried to adjust her medicine and have been able to work with her OT and therapist. 

I am continuing to try and find the best and most appropriate help for our girl. After 4 months we aren’t seeing much improvement. We have been working with the FND diagnosis, only to find out this week it can only be diagnosed by a Neurologist. 😳. So, in order to get into Behavioral Psych at children’s we need a diagnosis from a Neurologist. I found a Neuro doc who works with the movement disorder clinic and Sam will see him April 5. She will also start in the Eating disorder clinic being treated for ARFID- Avoidant restrictive food intake disorder on March 27. 

We are at a loss for our girl as she has lost muscle tone in her legs and is so weak. Is the weakness from lack of use or is the lack of use from weakness? Is the anxiety from FND or is it not even FND and something else is going on? I have been doing some research and just reached out to her pediatrician about a possibility of a vitamin b12 deficiency. We know something is going on. Our girl hasn’t been able to walk normally since November. She went from running, jumping and playing multiple sports, to barely able to walk. We have been to the hospital, the doctor and 3 different therapies. Praying the next few appointments can bring answers, with simple treatments and nothing scary or “bad”.  

We have been purchasing skincare and makeup each week as a prize for hard work at therapy. We have found her a piano teacher to start next month. She is so frustrated and sad at what she can’t do, we just want her to find joy in things she can do. We work everyday to find high calorie foods that she will like and try to enjoy.

We have started vitamins to hopefully offset those she is missing in her diet. We pray that someday she just wakes up and is as she was back in November knowing that isn’t realistic, we will continue to research and work to figure out what is going on and how we can help fix it. 

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!  

Sam I Am 💗

 

I haven’t posted on this blog in years. I kind of forgot I even had it! I have had a few people reach out and I wanted to write this out to let those who care know what has been going on and to have it all documented for myself💗 

  In late November Sam fell and hurt her knee. Not a significant fall or injury. Throughout the following week we noticed she was walking differently and fearful to play volleyball with her team. She also didn’t want to play her beloved soccer. By the end of the next week she was showing signs of weakness in her legs.

 When she spiked a fever during a sleepover and seemed tired the next day we decided to take her to Children’s. While there she had a fever and the on call doctor being an Oncologist was very concerned with how she was presenting. He ran many blood tests and expected to see bad results. As we waited in the waiting room terrified we tried to calm Sam who was completely distraught after having her first ever blood draw. Thank God the bloodwork came back normal. Even surprising the on call doc. We were sent home counting our blessing without any answers, but happy with what had been ruled out. 

Over the following week we noticed she was walking less. She was unable to navigate stairs normally and wouldn’t engage in any activity that required mobility. She stopped playing volleyball and soccer and was sick with worry going to practice even to watch. She struggled to go to school and was constantly afraid of something happening, of falling and hurting herself or being away from home. During this time she also ended up with a stomach bug and got sick at school. We watched our happy silly girl become a shell of herself. She cried morning and night, was afraid of anything and everything. Couldn’t step down the front step from our house and feared walking next door. She struggled getting in and out of the car. She looked frail. We tried to do Christmas things like go to the museum, but she was scared to walk around. Scared of the people, crying and just wanted to go home. Everyday it got worse.  She started talking to the therapist at her pediatrician. She saw her a few times and she suggested having her see an Occupational Therapist as well. 

At the start of Christmas break her fear became paralyzing. She was moving very slow, her body was stiff and the movements she did make were rigid.

She struggled with normal tasks like to get in the bath, off of the toilet, stand up, sit on the ground, bend her legs. She feared standing up at all and walking was incredibly hard to get her to do. When she did walk her gait was so incredibly off.  She had her OT assessment and continued therapy. The days got worse and she was afraid to eat. We spent our days forcing her to eat or drink in small amounts as she feared vomiting If she ate. Anyone who is familiar with ARFID understands how incredibly awful this disorder can be. She was losing strength in her legs and cried from fear off and on all day. We found small moments of joy over Christmas, but it was all consuming for not only Sam, but our whole family. We are so blessed that we are surrounded by people who love us so much. Sis took over Christmas dinner with a days notice. We spent it together and it really was a great day.

The whole season was different than we had expected, but it was the best it could be and we were together.

 Throughout the weeks Sam had a spot she felt safe on, on the couch and we had to make her get up and walk a “lap” to move her legs. She cried to have to get up and we had to help lift her to her feet. Grandma and Papa came over to get her up and talking and played many games of Sorry and Uno. 

 I was in constant contact with her pediatrician. She assured me that physically the doctor had ran every blood test. Thank God I have a dear friend who is a doctor and he was able to assure me and calm me down when my own fear set in. We felt helpless and like we had no direction. 

After a month of not knowing what was happening we were relieved to get a diagnosis. Functional Neurological Disorder (FND) also known as Conversion disorder. We explained it to Sam that something in her brain misfired and her body and brain weren’t communicating. This disorder has caused physical, emotional, mobility and sensory issues. We aren’t sure if underlying anxiety caused it or if it caused the anxiety. We do know that the last few years of trauma surrounding Wyatt’s injury could have been part of it. When she hurt her knee she immediately went to Wyatt’s injury. She and I spent a lot of time talking about that with skills we both learned from her therapy sessions. 

With the help of a friend and Sam’s fear of Children’s Sam started OT at ABC Pediatric therapy. She has been able to start to trust her body again,  We also discovered using sour spray to distract our brain when we felt overwhelmed.  As of the beginning of January it had been over a month since Sam jumped, ran, walked up the stairs without holding on, stood up without help, or did any physical activity. As she continues to deal with the physical aspects, but we have seen some amazing changes with her too. One morning when she woke up it was like a switch had flipped. She woke up happy and wasn’t crying. We heard her laugh and she had a little more pep in her. I heard her singing along to One Direction in the car. Things I had once taken for granted.  Tj and I held our breath afraid to say anything! She has thankfully been our sweet girl since. She has woken in the morning smiling instead of in tears. She has laughed and been able to enjoy playing with her toys. 

She has been able to go out in public places, which made her panic a few weeks ago. She has been eating chicken nuggets and Mac and cheese! After weeks of barely anything she has some pounds to pack back on. She has been able to get into the bathtub again, which caused such panic attacks she could barely breathe a few weeks ago. Slowly, She is starting to use her body again. After three sessions of OT with her beloved Sarah, she started to trust herself again. Last week she jumped and hopped in place. Tj and I felt like she learned to walk again. Anna and Wyatt cheered with actual joy. Sam was so proud of herself we sent videos to grandma, papa and sissy. 

She has a long road of recovery ahead of her over the next few months. We hope and pray that we continue to see improvements and we are so incredibly thankful to have our girl back smiling and happy. She has OT twice a week for the next few months and will add PT into that soon to help her to correct her gait and gain more strength in her arms and legs. We continue to work with her therapist and pediatrician as well. As of mid January she has had 5 sessions of OT. She loves going and has been working so hard.  What she can’t do one day she will come back and show Sarah she can do it the next visit. She has been able to jump on a trampoline, bend her knees, do log rolls and walk backwards. This week she kneeled and crawled!

These are huge fetes from a few weeks ago when she could barely walk, couldn’t bend her legs and would actually pick her leg up with her hands to get into and out of bed. She has been working so hard to use her muscles. She still lacks a lot of muscle tone,lost over the last months, but her OT is optimistic she will get it back with OT and PT. 

A few weeks ago we went to the mall and made it to 2 stores. She struggled walking. Today we walked almost the whole thing and she happily spent my money on skin care and new shoes!

The differences are astonishing seeing how far she has come. Thanks to her good friend, Stella, school has been so much better too. Mornings were tough and there were a lot of tears and fears. Last week we asked if Stella (and her brother) could come in our car to school. It has been a game changer and made our mornings full of smiles! 

She has worked so hard both in therapy and outside of therapy. She made a big decision to go back to her soccer team as a “coach” to cheer them on. The last game we attended left both of us in tears and absolutely broke my heart. She sat at a table just broken and in tears. She didn’t even want to see her friends. This time she sat with her team and coached and cheered. She hugged her friends and was so warmly welcomed. This time I wanted to cry happy tears as I saw her walk to the box across the field. 

She has started eating all of her favorites again! Not eating may have been the scariest part of it all. We watched our girl lose weight and color in her face. A few weeks of very little food make a big difference in someone already thin. We are so happy that she is back to chicken, Kraft Mac and cheese, fries, cucumbers, ice cream cake and fruit roll ups! Not everyone understands how awful it can be to see your child afraid of food, having them come through it and be happy to eat is a huge win! 

The last 7 weeks have been a bit surreal. Each morning I brace myself that we go back to where we were, but pray for continued healing and happiness. Our girl is amazing and resilient and has come so far! 

We told Sam we know she will be back to running and playing and doing the things she loves. In the meantime Please keep our girl in your prayers!