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!