Thursday, January 10, 2013

Update and Details on Adam's Health

Monday night, out of the clear blue, Adam started having involuntary tic-like repetitive movements. We kept a close eye on it, and it continued all day Tuesday.

I have mixed feelings about putting a video of it here for all to see, but maybe someone can give us some direction, and I want my family to see what is happening.

There have been no changes or emotional reasons to trigger this sort of behavior. I do not think it is anxiety. He does this at 2 am when he is awake just long enough to go to the bathroom. He does it when he is running around outside. He does it when he is calmly listening to a story. The last part of the video shows him twitching his fingers the moment he fell asleep. It seems neurological to me.

Adam very recently became strangely obsessed with making sure his blanket is perfectly smooth, with no wrinkles in it, which seemed odd to us, and these strange movements all the sudden had us worried. Wes found some information online that concerned us. I am recovering from strep, and there is a condition in which strep attacks the brain instead of the throat. It causes a rapid onset of tics and obsessive-compulsive behavior. The condition is called PANDAS. You can click here to read about it.

I called the after-hours number at our pediatrician's office & a nurse called back. She didn't think we needed to scare him with a trip to the ER or risk exposing him to the viruses floating around there. She suggested we come into the office Wed.

Our Wed. appt. was at 11am. Adam's quick swab for strep came back negative, and his repetitive movements were still going strong. The doctor called a neurologist who said we needed to go to the ER and that he'd meet us there. They thought that it was caused by an infection targeting the brain. The pediatrician told us that we could expect blood work and possibly a spinal tap. We were so afraid. I was shaking as I sent out texts to let people know what was going on.

The tics subsided some once we were in the ER. Seven different doctors came to look at him throughout the day. The attending finally came and immediately said that he didn't see anything that made him think it was caused by an infection. He didn't want to do any invasive tests and told us it could be tics, obsessive-compulsive disorder, or stereotypic (repetitive) behavior. It might go away. It might not. We are to meet with him again in 2 months if it hasn't gone away. We can cancel the appt. if it does go away and we are to come in sooner if it worsens.

The pediatrician called us back as we were packing up to be discharged, but she didn't sound so sure of the neurologist's assessment. As I explained what happened, she kept saying, "Interesting." Then she told me we could come back to the office and she'd do the blood work and that she'd refer us to someone for a second opinion if we wanted. This just makes me think it isn't a good idea to sit around and wait two months to see what happens.

We are going in at 1 pm today to get blood work done. Levi is with Grams and Grandpa enjoying some special time with them. I will post an update here whenever I know more. Please pray that we can figure out what is going on with our sweetheart.


18 comments :

Allie Rhodes said...

Praying for you....a very similar thing happend to my son after he was hospitalized with pneumonia. Hoping the doctors figure this out quick!

Leah said...

We're praying! Love you guys!

Natalie Browne said...

April, I write this knowing that each case is different. Yet, you've asked for input. Drew, my oldest went through two scary phases: first when he was one he head banged when tired or upset. It passed without our getting a medical opinion. Then, when he was six he began hand-washing obsessively. If I talked to him about it, it got worse. Looking back, I wish I had taken him to Texas Children's. But we were so afraid that we'd be given a diagnosis that was worse than none that we decided to wait two weeks and by the end of that time he had stopped. I now think that he probably had allergies that went unrecognized. He is now 34 and has had to deal with adolescent-onset allergies for 20 years. The current new allergist is the first to take the food part of the picture seriously. Everyone else, even at the Medical Center, focused on molds, dust mites and pollens.

I hope the second opinion is helpful rather than confusing. Love.

Julia said...

I am praying complete healing, in JESUS name!

Becca said...

Oh, goodness, I'm so sorry you're all going through this!! I hope he gets better soon, and that it's nothing serious! I have a friend whose little boy has stereotypies that come and go. The hope is that he'll outgrow it - after a battery of testing there's been nothing conclusive to say otherwise.

Melissa said...

I will be praying that you get some answers soon!

Bruce Shaw said...

Yes we will be prayingand lease keep us updated.

Jill Meador said...

Praying for sweet Adam and for you and Wes!

Anonymous said...

Praying for Adam. When my son was 4 he had similar symptoms. Neuro at Tx. Children's diagnosed as most likely a virus...he had a very low grade fever for over a month. also, a breathing medication (Proventil used in a nebulizer) was a possible cause/trigger. It eventually disappeared. Praying for your family and for answers.
Cindy

Cyndi Murphy said...

You know we are praying that you find answers and for complete healing very soon.

Kristin O'Toole said...

You are all in my thoughts and prayers. Hopefully you get some answers soon.

teal915 said...

Hey April. My son went through the same thing. Almost exactly a year ago, he was put on albuterol for wheezing. It aggravated his system, and he started ticking. His was a loud

teal915 said...

His was a loud gasp that sounded like he couldn't breathe. It was horrible. I was very scared. When I took him to the ER, they said he did it for attention. He also did it while sleeping. We went to a neurologist too. He was diagnosed with a transient tic. If it lasted a year, it would be Tourette syndrome. His doctors also believe he has ADHD. I did a blog post about it

teal915 said...

Ugh, I keep having to publish. Here is the blog post http://teal915.blogspot.com/2012/02/tic-disorder.html?m=1

teal915 said...

It's definitely a good idea to look into it just in case, but I wanted to offer some peace of mind that we had been through something very similar, and our son is fine.

Christina B said...

My husband and I both teach at the middle school with your husband. Please know that we are all keeping this little boy (and mommy and daddy) in our thoughts and prayers...

Renee F said...

I work with your husband at the middle school. I am praying for you and your family. I have been through a lot of medical conditions with my sons, and I know how hard it is to sit helplessly and watch. About a yer ago, I think in New York there were several girls that developed ticks, pretty severe. They ran a segment on the Today show and severe Drs worked on their case. There may be something useful in this story.

riseandshinelifeblog said...

Please know I am praying for your sweet boy & family!!