we can do hard things...

This has been an over 5 year journey of searching and seeking and trying to figure out what is going on with our son. It's been messy, hard, scary, and discouraging throughout the years. Trying to explain to friends and family the behaviors and how they come and go, never being able to find the right words to explain how amazing this little boy is when most of the time they see an anxious little boy with some big behaviors depending on how he's feeling. It's tough, but we can do hard things....
settle in...this is a tad long and a little scientific at times. :)

For us, it really all started after his hospitalization when he was two and a half. I know I've written about it before, but that's when we noticed a huge change in Evan. Not eating very well, defiance, anxiety, obsessive, etc. The other thing we noticed was that he was either okay or really sick. There wasn't really an in between with mild sicknesses. We brought him to the hospital because he had a fever but was super lethargic. We were there a week and then sent home with a picc line for two weeks.

Here is a little more about that stay...
Here, here, and here

Over the last five years we have seen numerous doctors, neuro-psych's, nutritionists, had way too many observations and evaluations . He has had numerous blood draws, catheters, mri's, throat cultures, urine catches and hospital visits and stays. Once school started in preschool, he had to be removed from classrooms, was suspended, and then impulses got worse with hitting, kicking, biting, etc. Looking back, this always got worse when others were sick in the classroom, or someone he was close with was sick. When we knew he was really sick and something was going on, we noticed him trying to head butt others, had suicidal thoughts about himself or hurting others, he had to be safely restrained, had mania, impulses, attention seeking and avoiding behaviors, emotional extremes, food refusal, not sleeping, body pain, rages with nose bleeds, running away, and in constant fight or flight mode. It's been a long road with tons of unanswered questions. We have been diagnosed with Sensory Processing Disorder, Generalized Anxiety Disorder, Oppositional Defiance Disorder, and one doctor who believes Evan has PANS/PANDAS and one who doesn't. I believe in my momma gut he does have that... Here is a little more information about that. I will forever be grateful for Brain Balance where we spent 9 months last year. They were the ones invested in our son and were the ones to bring up PANDAS/PANS to us. So very thankful for everyone who has been on this journey.

This has ALWAYS been an up and down roller coaster ride. It's stressful and scary and hard. It's heart breaking seeing your child struggling and getting hurt and overwhelmed and just not feeling good, but not knowing what to do to help him get better.  We have had SO many unanswered questions, not knowing what to truly think when the symptoms change quickly and how they vary so much, depending on how E's feeling and if anyone around him is sick.

Physical symptoms we notice when he isn't feeling well or starting to get sick is huge bags under the eyes, intense separation anxiety, food refusal, picking at his lip, huge pupils, emotional outbursts that change rapidly...one minute mad and raging and the next crying and needing to be held. We notice that he starts to say "I don't know" for even the most simple questions, he has age regression and then school refusal and handwriting regression and refusal.

2016 has been a year of learning, growth, changes, and health.
We are working to find answers and get him healthy.
This was Evan at the beginning of 2016 and at the end. There have been lots of changes in food, supplements, and school.

We have been using Young Living oils to help keep his immune system up. Using Thieves, Thyme, Oregano, Copaiba, Lemongrass, Frankincense and Release. We are also giving him Ningxia Red for those antioxidants that his body doesn't have. We've been adding YL protein powder to any milkshakes or ice cream he eats as well. We've also upped our Epsom salt baths and oils to try and detox his body since it can't do that on it's own yet...We've come a long way in less than a year and we've still got a long way to go to get the inside of his body and cells healthy.

We have gotten more results back in our fight about getting answers and help for our son within the last week. We also did a 23andme genetics information and our nutritionist has helped us read the results.
We are still diving into what this really means and getting started on the road to recovery. It's overwhelming and scary and honestly makes me wonder how many kids out there also have genetic and nutritional deficiencies and are being treated for other things.

Here is a condensed version of what is going on with Evan's genetics as well as other illnesses and autoimmune obstacles.

So in addition to anxiety, sensory processing, and most likely PANS, we have recently gotten more blood work back within the past week. This is an immune system issue and even if he was eating the best foods, his body would STILL be having a hard time with this. His system isn't letting in the good stuff he is getting and getting it to where it needs to go. Then...it's NOT releasing the toxins in his body, so there has been a HUGE buildup on toxins that aren't getting released. His body is making him sick.

We are still waiting on results for Lyme's Disease and also a stool culture for yeast and bacteria in his gut.


He is positive for
*Coxsackie B Virus #4 (this is not hand, foot and mouth...that's coxsackie a virus)

* Low cholesterol, which can show the same behavior symptoms E has been having over the years.

* Zinc and Protein deficiency

*Vitamin D resistance, so basically vitamin D is being deflected from his body. He is VDR homozygous, which could also explain his extremely low muscle tone. VDR mutations have an impaired ability to make dopamine and an impaired ability to get rid of it. The body just cannot keep dopamine at the right level. This will result in moodiness, and mood swings. When dopamine is low you will feel all your aches and pains more intensely and have difficulty relaxing even when you are tired. You may find it hard to switch off and find your head is full of thought about what you hve done that day, or have to do, so you cannot clear your mind and go to sleep. Low dopamine kids are more likely to have temper outbursts, get fixed in a mood of anger or agitation (often about something totally unimportant) and end up in total meltdowns. They will typically do all the kind of things that make irritating people tell you your child really needs discipline. Impaired immune fuction is what is going on. People with a VDR mutation will be aware that their immune system does not work as well as other people’s. Vitamin D regulates the balance between the Th1 and the Th2 immune function

*Essential Fatty Acids and Omega 3 oils and DHA are basically non existent and increase inflammation in his body.

*Mitochondrial Dysfunction

*Low in B12 and poor methylation

* KPU or Pyroluria the symptoms of pyroluria have a mysteriously intractable quality to them and may lead to lifelong issues with severe inner tension, ongoing anxiety, poor stress tolerance (with added stress of any kind making the symptoms worse), digestive issues and difficulty digesting protein, frequent colds and infections, joint pain or stiffness, acne, eczema or psoriasis, mood swings and reactivity, poor short term memory, and a tendency in many to lean towards being a loner…among many other potential symptoms.

* Severe deficiency in glutathione, which is themaster antioxidant
His body can't release toxins and has poor methylation. Things are really going in or out or getting to the correct place where it needs to help his body. Right now it isn't really even about what he eats or how much he eats, because his body just is fighting against itself and can't release any toxins or detox.




Here is just a little of some of the bigger genetics stuff going on that we wanted to share...

MAO-A homozygous -- These genes function to break down neurotransmitters such as norepinephrine, adrenaline, serotonin and dopamine. His version of this mutation causes aggression, anxiety, impulsivity and poor social skills. Here is more info. This is also a key regulator for normal brain function. 

MTHFR A1298C homozygous -- MTHFR is an enzyme critical in the methylation pathway that converts homocysteine to methionine, folic acid into folate and management of neurotransmitters. Quickly explained, MTHFR is responsible for detoxification. Here is a little more info. I also have tested positive for this gene through the 23andme genetics kit. 
I just learned that folic acid – which is a synthetic vitamin found in fortified foods and almost all vitamin supplements – is considered harmful for people with MTHFR mutations. Though it is easily absorbed by the body, people who have low levels of the MTHFR enzyme are not able to convert very much of it into usable form. So what happens to the unconverted folic acid? It attaches itself to the same receptors in the body used to absorb folate, effectively blocking the body’s ability to absorb any usable folate that is floating around.

MTRR homozygous -- like MTHFR, MTRR plays a critical role in methylation, particularly the methylation of cobalamin (B12). 

Now to continue to fight to get the right treatment and supplements in his body and start the process of improving and getting better.
Man...this kid is a fighter though. He is a warrior and one of the bravest people I know.
His superpowers are amazing and I am so proud of him. 

Would love your prayers as we continue to try and heal our son.
xoxo
-Kasey

Pandas....and not the cute, cuddly bear kind.

PANDAS stands for Pediatric Autoimmune Neuro-psychiatric Disorders Associated with Strep. This disorder is the result of a misdirected immune response following an infection or illness usually associated with Strep. Children with PANDAS experience an acute onset of debilitating neuro-psychiatric symptoms when triggered by bacteria, viruses or strep.

We are all still learning about what it is....what it means....how to get help for our son. We would LOVE your prayers and thoughts as we navigate through this journey.
After many, many years of me never feeling like we had an "answer" for Evan's roller coaster of emotions and behaviors and random illnesses and sicknesses, we finally have an answer of what has been going on in his little body. Evan has an autoimmune disease.
 We believe the onset of it happened when he was 2 and was hospitalized when he was found to have bacteria in his blood. 

(Read more about that here)

So our son, has Pandas and it isn't this cute, cuddly kind. It's messy, chaotic, hard to figure out, and has changed his life as well as our lives. 

In Pandas, the body becomes confused after a strep infection, or virus or bacteria infection and creates auto-antibodies that begin attacking....the brain. yes. the brain that controls everything. It's so scary. It specifically attacks the basal ganglia, which is the area of the brain that controls emotions, movements, certain learning processes and other functions. When the brain is being attacked and inflamed, it unleashes unrelated symptoms that may look like mental illnesses or behavioral problems or neurological issues. Pandas can happen suddenly and dramatically. It seems like overnight your child develops OCD, tics, ADHD, anxiety, sensory issues, urinary problems, insomnia, rages, impulse, manic stages, anorexia and more. School work may decline, especially math and handwriting. 

Here is a video from earlier this summer that shows how bad his anxiety gets and how fearful he is when he is in a flair. And come to find out, a few days later he was diagnosed with strep. The second video is food aversions and anxiety over a peanut butter and jelly sandwich from lunch from last week and then come to find out, he tested positive for strep today.  For us, the symptoms always show up first. Defiance, mood swings, rages, lack of sleep, not eating, saying his neck and legs hurt, impulse, and anxieties.
This is a hard road to go down and I'm hoping that since we now have the results back we can get some answers and find the best treatment for him. 

https://youtu.be/WM4bwXtmWbY

https://www.youtube.com/watch?v=aSsOl-krzlc


End of school during a flair always, always, always resulted in a meltdown in the car on the way home. Crying, yelling at me, mad at himself, etc. We do a lot of blankets and holding to reset when upset. 

  

Wants to participate in activities, but then anxieties set in, and he feels like he can't do it. 

And when he isn't feeling good, almost every single night he is in our bed. Cuddled up and legs digging underneath for added pressure. 

Looking back, I have realized how much his body was crying out for help. Way more tantrums and more emotional outbursts the older he has gotten. More intense, more impulsive, more anxious, and even saying that he has wanted to be dead on more than one occasion. Saying that his body hurt, his legs hurt and his neck hurt. Over the last 5 years, we have seen multiple doctors, have tried multiple therapies and spent thousands and thousands of dollars trying to figure out what was going on with Evan. We have always had problems with preschools and mother's morning out and school. Looking back, when E was getting sick is when the behaviors would significantly increase. Not wanting to go to school, impulsive when something would happen to him and he would react back to them, usually with hitting, kicking or running away. ahh...the number of times he has run away....I can't even count. Running away from the situation, himself, other people....just to get away from it all. It's so scary knowing that something is going on in him that we can't control and never knowing when or how he will react. He's been so scared by something, usually insects, that he's run away or has refused to get out of the car, or had panic attacks on playgrounds because he can't make it back to the car. He's run away from us, from his teachers, run to other classrooms and hid, has run through the woods by our old house, across a 5 lane highway after running out of school, etc. He has hit us and punched and kicked and has tried to head butt others when his is in a flair and we have had to restrain him to hold him down to get him calm...to help him feel safe again.
Pandas symptoms are so fast and so intense and usually without warning. When E isn't sick or has all of this inflammation going on inside his body or his brain, man....that kid is amazing. Helpful, caring, kind, positive, loving, and on and on....but when he is having trouble, he's just crying out for help in a ton of different ways. 

Within the past few months of getting Evan to our infectious disease doctor, Dr. C, I've begun to notice changes with his behavior to recognize if he is having a flair. I can tell he is getting sick just by the changes in his behaviors. He starts having issues with sleeping and becomes way more anxious at night. He will say that he "never sleeps". He isn't hungry and won't eat. He has tantrums and huge emotional, crocodile tears where his feelings are hurt so bad. He is bouncing off walls and can't sit still and way more impulsive where he'll hit or throw and the chewing on his shirts starts back up again. He starts having tics by constantly sniffing as well as screaming to anyone who touches him to "don't touch me!". He becomes obsessive with certain toys or screen time or will obsess on repeatedly asking the same question over and over, even after getting an answer. He will pace and walk in circles. The onset of these behaviors is usually sudden and we are learning as we go with this. We got the blood results back less than a month ago, and now we take it a day at a time and hopefully continue to educate ourselves as well as others. 

It isn't "always" all of these symptoms at the same time. When E ran away from school and was found a mile away by a worker at a hardware store, he had had spots on his torso. I asked if he had ate something with eggs (since he is allergic) and he said no. Well, this most likely was a bacteria or a virus and his symptoms were on high alert and he wasn't himself or thinking. His brain was being attacked and he had some uncharacteristic behaviors. Last fall is when we noticed the huge shift in behavior. He was trying to head butt his Brain Balance instructors, spitting, kicking, running away and hiding. This was when we also went in to the doctor to see what was going on, and again he tested positive for Strep. He showed no signs of strep or complaining his throat was hurting. Just a huge shift in behaviors. These amazing instructors were the ones to actually suggest we look into Pandas and getting him tested for this disease. Another time this summer (before finding out he has Pandas, but suspecting he did), he was "off" again and I took all of us to get tested for Strep. Our younger son actually tested positive for Strep with the rapid test and then sent Evan's away for the culture and his ended up being positive too. Neither of them showed signs of strep except for E's change in behavior.
This first week of school, E's behavior was off. Anxieties, impulse, hitting, etc and this morning I took him in to get tested and sure enough....positive strep test.

And what can be confusing is that Evan doesn't exhibit these Panda's symptoms all of the time. He is not always ocd, adhd, anxious, sensory overload, etc. These are just symptoms of pandas that are not always present. Looking back, Evan can be fine for weeks and months at a time. He went 14 weeks this past school year without a referral. That was HUGE for him. He wasn't being impulsive and hitting others. He wasn't running out of the classroom. He will not run when bugs are around. When he is fine, he's fine and when he's not fine, it's hard and overwhelming. 

This video is one of my favorites. He's calm and talking and playing with a flying bug. Usually those stress him out big time. 

https://www.youtube.com/watch?v=_w-0PGvXABs

I cried when the Cunningham Blood test came back. I feel like we finally have a reason and an answer as to what has been going on with Evan these past 4-5 years. It's been a roller coaster ride for sure and I know we will continue to have our ups and downs, but I know that we will fight this and help Evan's brain recover. 

Pandas kids can recover and go into remission, but it can take months or even years. There may be new flares or a exacerbation of symptoms when they get sick or are exposed to illnesses that trigger the Pandas autoimmune reaction that results in brain inflammation. It's overwhelming for sure. There isn't a lot of attention for this disease and it's especially hard when something is going on with him and he's acting up, for others to look and judge him and his behavior. It makes me sad. It's an invisible disease and hard to explain to people.  I didn't know that an average, normal, everyday infection that we can all be exposed to, can trigger these behavior responses.  That when an infection or bacteria or virus is in him, it triggers a response and the child you see is suffering and you don't recognize him. The behaviors hit quickly with the sudden onset of different symptoms. 

I'm so incredibly proud of my son and everything he has to do to make it through each day. He is such a brave little guy.

Here are some helpful articles and websites
for kids (In a Pickle over Pandas book) helpful for kids and teachers

Panda's Network

New role for the immune system: controlling social interactions

A new documentary called, My Kid is not Crazy

http://okgazette.com/2016/05/12/third-graders-new-diagnosis-leads-to-calmer-focused-life/


Thanks for reading along and joining us on this auto-immune journey. 
-Kasey