Tuesday, January 20, 2015

Dystoniwhat?

It was a little over a month ago- that call from the school.  It was Nurse Kim. 

His jaw is what?  Is quivering?  Are you sure he isn't doing this on purpose.  Blue streak? Really.  Is it a seizure?  Ok, I'm on my way.

I called Rex to let him know we were kind of in an emergency- we didn't know what was wrong, just that something was.  Rex picked Elijah up and we met at the doctor. It was supposed to be our first normal day back at school, me back at the office for a full day- no appointments, meetings, or suspensions.  (insert hysterical laughter here)

I didn't understand the jaw quivering until I saw it.  The blue streak across his lip and swollen face was alarming.  After a few hours of uncontrollable jaw spasm and a hefty shot of Benadryl we went home thinking we had headed off a severe allergic reaction to a medication with instructions to follow up with his psychiatrist in order to safely taper off the assumed offender.

It wasn't that simple.

Within 24 hours we were at the Emergency Department in respiratory distress, full on panic attack and the seizure like symptoms.  The next several days would include multiple late night conversations with the on-call docs, daytime office visits and another ED visit.

During one of the office visits, the doctor asked if anyone had explained this to me- then she went on to explain that the initial diagnosis- severe allergic reaction was actually Dystonic Reaction.

Dystoniwhat?
"You can google it- there is tons of information on it" she said. 

Basically, Elijah's body was going on strike against the anti-psychotic meds he was taking. 

We started by removing one medication and then another.  But the seizure mimicking symptoms were increasing.  It would start with "Mom, Mom.... I don't feel good" followed by his jaw spasm and then everything from trouble breathing, inability to use or move his arms, unresponsive for several minutes, severe pain in his hips and legs, rigidity in his legs, panic attack, swelling face and throat, headache, dizziness, nausea, blurred vision, and more.   I was also advised that it can sometimes be permanent which got our attention- and our push to stop the medications.



But, instead of that,  we were getting push back from the ED who seemed to base their diagnosis on his history and not his symptoms- suggesting, because of his history that this child who is terrified of going back into residential-could be doing all this on purpose so he would have to visit the hospital.  Really? 

Try to chatter your teeth in perfect rhythm too fast to see on video for three hours straight- when you can successfully mimic that then I might entertain your thought that this for kicks and giggles. 

I'm so thankful for his family physician- who in reading the reports from the ED for Elijah immediately called to check on him, and then tell me that he did NOT agree with their suggestion and that he was certain this was an allergic reaction to his meds, it was real and was painful for him and for me to stop another of the medication until we could get in to see his psychiatrist the next day- who also agreed, and took Elijah off all but one of his meds. 

"You're not going to like me" he said- since we would be tapering him off during Christmas break.  Good timing for school- poor timing for Mom. 



After being concerned about the hefty doses of meds and the scary physical affects I watched his body go through, I was ready. 
Besides, Rex and I know that living with a RAD kid meant the holidays would be at best full of challenges so what's another one?

Within a few days  of coming off the meds the seizure-like symptoms started to diminish and eventually over the next several weeks went away.  I stopped hearing him call out "Mom, Mom" which always accompanied  a distinct look of terror in his eyes.

We've had some tough days and even Elijah has been asking begging for his meds back.  He can tell a difference when he is off of them and in his words, "it's too hard" without them, and he wants it to be like it was when "I came home" (from Fresh Start) "when things were good". 

I remember when we first agreed to give our then 6 year old prescribed medication.  It wasn't a quick decision and one of the first we felt we had to defend; but when your young child is telling you how he will kill himself and why he wants to, you can't ignore the depression and pretend it isn't real. 

We went yesterday to see the psychiatrist after I requested we move the appointment up a few weeks.  We do see him struggling and we don't want him to lose the ground he worked very hard to cover while in residential. 

Thankfully, we're not going back on the anti-psychotic meds just yet. But I'm happy that he's starting a new depression medication that should also help him with his anger, mood and frustration.  We'll see how it goes and I'm hopeful we won't need the hefty drugs for a long time, if ever again. 

We're watching closely for allergic reactions- it could go either way. 

Many of us who experience depression and anxiety struggle with saying it out loud.  We fight against taking medications for an illness that hides so well behind our masks of "I'm fine."

After seeing the benefits of the medications personally and through my family, I'm not afraid of them like I once was.  We have to work together to remove the stigma that accompanies mental illness medications.  You're not alone.



If you're struggling with depression or mental illness, be encouraged that there are medications available to help make things "easier".  Just be aware of the potential side affects, read the fact sheets that come with the prescriptions and pay attention to your body. 

Happy Tuesday y'all!

Thursday, January 15, 2015

A Short Walk For The Boy- A Giant Victory for His Momma.

It's no secret we live each day picking our battles- trying to pick the ones that will prove we are tougher, stronger and more loving than he is.  And, often getting unwanted attention when we decide any particular issue is worth it.  The battle that is.

The message was not unfamiliar- the principal asking me to come in to the office when I pick the boys up today- there was an incident today.



 


I sat next to him while she reviewed his choices that landed us both in her office.  She told me about his comments that oozed anger while he sat like stone.  That is, until I turned his way and then he had no problem demanding "don't look at me". 

Blood boils.  I know because I felt it boiling in my veins today- and as it ran like lava the years of losing battles to this child who is desperate to prove I can't win flashed before me and I made a decision to walk right into battle.

In an effort to teach my son gratitude, respect and appreciation for simple things like a warm coat, a car to ride in, a mom who picks him up every day, etc.  I decided he'd walk home from school.

As he walked toward the car with his best friend, Mr. Bad Attitude, I told him of my decision.  He wasn't impressed and told me in no uncertain terms, "I am not walking home"  to which I calmly got into the car and locked the doors. 

I explained I'd happily drive next to him all the way to keep him safe, but today, since he doesn't need me or my car- he could experience life without it. 




He walked right back into the school where he was greeted by the principal who escorted him right back out. She knew my plan. 

He waited.  And fussed.  And tried to get into the car.


And when I refused- he went back to his home base. 

A few parents asked if he was okay and one even offered him a ride. 

He made his way back to the car ever so often to remind me what a horrible mom I am.  Eventually, turning into begging for forgiveness and to "PLEASE" let him in the car. 

I assured him I loved him, and would accept his apology- but he was still walking home today if he wanted to go home.  Unlike Isaiah who was once again caught up in his brother's consequences, I had nothing but time. 

He screamed, he cried, he beat the windows.  He got the attention of everybody except this Momma- because I would not engage and I would not lose.  At least not today. 




And then it happened.  He started walking. 

 
And just like I promised, I followed closely behind him with my flashers to alert traffic since our speed was exactly one mile per hour.  One. 
 
We ticked off a few people- the gift of their honking horns evidence of their impatience and clearly a lack of understanding of the victory being won this day on Garden City Boulevard.  If they only knew the full picture of what appeared to just be a little boy being stalked by a Chevy.  
 
 


All.The.Way.Home.

In his short walk, just under 15 minutes from first step to the driveway, somewhere along the way his best friend- Mr. Bad Attitude abandoned him.  We got home and I expected a blow up.  Pay back.  But instead, he walked up to me with a cold, snotty face and stretched out his arms.  He wrapped them around my waist and told me he was sorry and he loved me.  And I told him it was okay and that I loved him more- more than letting him be disrespectful and rude to his teacher, his principal and me. 

Today was probably the most important walk he has ever taken and it brought new meaning to one of our favorite songs- Take Another Step.  And this walk is one neither of us will soon forget.

Happy Thursday y'all!

Wednesday, January 7, 2015

Penelope- You are Loved!

Today was a life-changer.  In the best sort of way. 
A 6 lb 1 oz. bundle of heaven on earth sort of way.

I usually have a lot of words- and I could go on and on about the feelings rushing through these veins.  


nothing like a Mother's love
photo credit Shayne Allen 


Life.is.a.Beautiful.Miracle.

Piggies


And when life mimics itself- like it did today- when the waiting and seeing and holding and smelling and listening take you back to the exact time your own child was born- and you see said child experience everything that has made every.single.second.of.parenting.them worth it in the first glance, the overwhelming love and sharing of husband and wife- son and daughter-in-love as they welcome their new little one- well people there is just nothing like watching your child, hold their child.
Instant Love-got Daddy wrapped already

Try as I might, there's just not enough time, for all the words.

Grammie holding her the first time

So, I'll just let the images do the talking. 

 
Sisters meeting

Three Generations
Beautiful Mommy, Penelope & me.  I'm blessed.
Pappy was a little happy, don't you think?  

radiant smile


Maybe not enough words. 


chest to chest with Daddy- this is the picture that made me cry
photo credit Shayne Allen

Penelope you are most loved and blessed to be born to your Mommy and Daddy.  We are blessed to get to tag along to your miracle and be your Grammie and Pappy. 

shamelessly proud and thankful grandparents


We promise to make you proud (if you can forgive us for being a little loud)

abundantly blessed
photo credit Emily Allen



Welcome to the world Penelope! 
World, be jealous-it's okay just this once.






Happy Wednesday y'all!







Related Posts Plugin for WordPress, Blogger...