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. 

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.