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! 

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. 

Not so sweet sixteen …

 My sweet girl. 

This year is a big one. 

Such an important birthday. 

Full of sweetness and parties. 

Friends and family. 

Sixteen. 

Sweet. 

Sixteen.

Doesn’t feel sweet. 

Sixteen candles 

Still burning. 

Because you never took a breath. 

Instead of celebrating.

Like every year

I miss you instead.

My baby girl. 

That my body failed.

The one who never had a chance to live.

The girl I longed for and loved.

Every day since I knew you existed. 

The girl whose graveside I sat beside.

Every 

Single 

Day

month after month 

Day after day. 

I owe you so much. 

You have given me empathy. 

Taught me perseverance. 

Showed me how strong I can be. 

Most days I don’t feel so strong. 

Days like your birthday. 

I feel like a failure. 

Moms are supposed to protect. 

Help our babies grow strong. 

Keep them safe from harm. 

You my sweet girl

Never had any of those things.

Of all of the children I have called my own

You are 

The one I have always questioned if I failed. 

You are 

The one I have grieved with regret 

You are 

The daughter I have longed to hold for so long.

Sixteen years 

Without you.

The days have gotten better.

Time has made us heal.

But forever 

Without end

We are missing a piece.

A space

You should fill.

I hope they celebrate in Heaven today. 

With balloons and cake.

What we wouldn’t give 

To have you here. 

Our forever baby girl 

Happy Sweet 16 Emma Jean 

Your loving mama, 

Me 

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!  

18 Candles 🎂

 It is surreal to think that it has been 18 years since we welcomed Anna into this world.

18 years since the easiest, most blissful pregnancy and delivery. 

18 years since we became parents. 

18 years since a pudgy baby with a button nose changed our worlds forever. 

There aren’t enough words to explain how lucky we are to call this incredible human being our daughter.

This person Daddy and I have always said we can’t take credit for, because she was born this way. 

She is absolutely gorgeous inside and out.

 Smart, funny and so talented.

 Since she was a toddler she has had the gift of walking into a room and making people feel better. 

  She has a presence that makes people feel like they belong. 

She is sarcastic and funny, those Caito genes are strong.

 She is smart and charismatic, 

dorky and silly, 

beautiful and artistic. 

She is the perfect combination of procrastination and getting things done. 

She is a philanthropist, an advocate and a champion. 

She is a resilient survivor. 

She is just a really freaking awesome kid! 

We can’t wait to see how the rest of Senior year goes and to see all she experiences and accomplishes in her future. 

Happy 18th Birthday to our “Peanut”