Monday, June 20, 2016

if you don't mind...

At the end of this month we have a big ol' test and medical stuff going on for our oldest with blood work and information that I am still reading about and learning. Our doctor and our brain balance teachers think E has an autoimmune disease going on called Pans/Pandas. Pediatric Autoimmune Neuropsychiatric Disease Associated with Strep or other bacteria and viruses. We would love your prayers as we start this journey and trying to find some answers.

See more information here at PANDAS Network.

Here is the list of symptoms of this autoimmune/neurological disorder:


Symptom presentation and severity can vary from child to child. It can also vary in each exacerbation. Below is a list of possible symptoms a child may exhibit. Not all need to be present. Not all possible symptoms are listed.
See OCD in a Young Child for a list of how OCD can present itself. OCD is not only obsessive hand washing!
This includes selective eating to full out food refusal.There can a variety of reasons why the child experiences this, including contamination fears, sensory sensitivities, trouble swallowing, fear of vomiting or weight gain, and more. If restrictive eating is resulting in severe weight loss, call your provider immediately.
Emotional lability includes not being able to control one’s emotional response. It may include uncontrollable crying or laughing. This is a neurological symptom.
This includes baby talk.
This includes deterioration in math skills, inability to concentrate, difficulty retaining information, and school refusal. School performance can also be a result of another contributing symptom, such as OCD or severe separation anxiety.
This includes margin drifts and legibility.
This can include being sensitive to touch, sounds, and noise. Simple touches may feel like they are hurting. One may not be able to stand the way socks feel or the texture or temperature of certain foods. Sensory processing problems can also cause difficulty in finding an item when it is among a vast selection of items. For example, a child may have a hard time finding a shirt in a full dresser or finding words in a word search.SOMATIC SIGNS
This includes sleeping difficulties, enuresis, frequent urination, and bed wetting.

This includes both visual and auditory hallucinations.

 Evan has shown these symptoms in the last few years. I had NEVER heard of Pans/Pandas. It wasn't until Brain Balance where he (we now know...was having a "flair") was regressing, spitting, trying to head-butt people, and was in constant fight or flight mode. It would get bad for about 1-3 weeks and then he would go about 10-12 weeks with no problems at all. No dilated pupils, anxiety wasn't on edge. wasn't as emotional, etc. But we were trying to figure out what was going on. This was different than his "typical" diagnosis of Sensory Processing Disorder and Anxiety Disorder. We were still missing something. Brain Balance asked their supervisors what could be going on and they had asked if he had strep recently....and he was diagnosed a few days before following up with us on his behavior,etc. They suggested it was PANS or PANDAS (one is associated more with strep and the other is more viruses/bacterias). We started reading up on it. And we read some more and the more we read, the more it "sounded" like E. We called and talked to our doctor and he said he would get in contact with the infectious disease doctor here in town who specialty is PANS/PANDAS.
We also knew something was seriously going on when Evan ran away from school. :( He slipped through a locked gate and went a mile away from school and crossed a 5 line highway. Thankfully there were some store workers who brought him into the store until the police arrived. So scary and his anxiety and flight response have been getting worse as he gets older and that was the icing on the cake for us. We made an appointment with the pans/pandas doctor and next week we see him. I'm hoping this blood test will help give us some answers on what is going on in Evan's body.

It's scary when your child is sick and you don't know what is going on. It reminds me when he was 2 and was hospitalized. I'm not sure if this is when the "symptoms" started with this, if it is this autoimmune disease, but this is around the time frame when we noticed a big change in Evan with everything.

October 25, 2011
October 28, 2011
October 31, 2011

June 2012 Giving back from our hospital stays 

Today, we've been noticing that E's behavior the last week has been reverting back to huge anxiety not wanting to go outside at all because of seeing a bee. He hasn't been sleeping great lately and is highly emotional and then impulsive. I had a feeling he was getting sick. I took him to go get a strep test to see if it was positive. Alex and I also got tested to see if we were carriers. Well...turns out mine and Evan's were negative and Alex's was positive. This explains so much. Alex has NO symptoms of being sick. No sore throat or anything. E lately has been "off" and I'm guessing getting sick from Alex.

If you don't mind could you pray for Evan. Pray that we find some answers and get his body the treatment it needs. Pray that the blood test isn't too traumatic for him on Tuesday.

Thank you

Sunday, June 12, 2016

old and new...

Lots of changes lately. We've moved out of our home that we had lived in for 11 years, but we are excited about our new one and the memories we'll make in this one too! I'm going to be posting some before and after pics in our new home soon. Still unpacking ;)

Kansas City weekend

 A week ago Evan and I got to attend Arrowhead Stadium. This year at school he wanted to raise money for the American Heart Association that our school was doing for the Hoops for Heart. We had enough friends and family donate, that he ended up being a top 100 Regional finalist. We got to see the locker room, lots of games and fun things for kids to do, and also watch a movie on the field. It was awesome to have some mom and Evan time. My high school also made it to the final 4 and we got to go and watch Summit play before the event. They won and it was fun to watch. Made me miss playing! Alex also got his kindergarten shots! Can't believe he will be in kindergarten! Love these two!

5 and 7

I am not sure how these two are already 5 and 7. Both are obsessed with Jurassic World and Legos so that was the theme this year. :)
Happy birthday to the two best things in my life! Love you both!

Saturday, June 11, 2016

Congrats Mike!

Mike graduated with his 2nd masters! We are so proud of you! Now to finish the phD! love you!

Photo by Shane Epping