Thursday, May 22, 2014

Emery Update

Prior to breaking her leg, Emery seemed to just be getting out of her latest "episode". These are the episodes that begin with an illness of some sort. The episodes include hair pulling, chin to shoulder tics, and head hitting. Clumps of hair, hard tics, and bruise causing hits. This episode began with a cold on April 3rd. So these OCD symptoms last well beyond the cold. I was grateful the OCD symptoms were lessening both in frequency and intensity. The sores on her knuckles from hitting were even beginning to heal.

After the break, I was terrified the trauma would send her into another episode. But as upset as she was at first, the symptoms did not increase.

Fast forward one week to Monday, May 12th. It appeared to me that she was hitting herself more frequently and harder. Was it just my imagination? She wasn't sick. No cough. No runny nose. Eating normally. Acting fine. On Tuesday, I noticed a clump of hair on the floor near her chair. My mom mentioned the increased hitting. I didn't want to admit it, but I knew the OCD symptoms were increasing and intensifying. By the end of the week, it he symptoms were once again at their worse. Bruising, open knuckle sores, hard tics, and new bald spots.

Ugh. What keeps causing my baby to inflict pain upon herself? I get depressed every time another "episode" begins. I pray constantly that God will help me to help her. Why can't I find what is causing these self-injurious behaviors? Why does the neurology department at DeVos not think this is a pressing issue? What is wrong with my daughter?

On Thursday of last week, Emery's therapist, Erin, checked her ears. Heavy wax build up - again. Erin suggested that maybe Emery has allergies and the allergies are causing the excessive wax and the pressure in her ears is causing her to hit herself. Yet another possible answer to why she is hitting herself. So I feel a touch of hope as I research this latest theory. Allergies do cause excessive wax production. Emery recently had wax build up in her ears and it was cleared up with Debrox. Emery has wax build up again. Her pediatrician stated that it takes about 2 years for someone to develop allergies in a new climate. The timeline fits. Could a daily allergy pill prevent the wax build up and cease the hitting, hair pulling and tics? Could it really be that simple? I have my doubts. Mainly because I am scared to get my hopes up. But I am giving it a try. I talked to the pediatrician and began giving her Benadryl and using the Debrox again. As of today, most of the wax is gone. After a few more days of Debrox and Benadryl, we will start her on an allergy pill. Maybe it will work and the self-injurious behaviors will stop. Praying.

I stumbled on to another possible cause for excessive ear wax production. I will go into this after testing the allergy theory.

Meanwhile, Emery's MRI that was ordered by her neurologist came back normal. No apparent brain injuries or defects. The neurologist also ordered a sacral ultrasound. She has what is called a sacral dimple on her butt. Apparently, this dimple is the result of her spine not forming correctly. This can cause issues in her brain. If she has no weakness in her legs, there is typically no brain issues. Since she has no weakness in her legs, the doctor thinks her brain is fine. He ordered the ultrasound just to be safe. I have been waiting for the ultrasound to be scheduled since April 3rd. I have called several times. I have a child that hits herself until she bruises and has sores on her knuckles but the neurology department doesn't think this is an urgent matter. Really? Why must I fight for medical help for my child? Just another ugh to add to an already long list.

I am emotionally (and probably physically) exhausted from this roller coaster ride. We are well into the fifth month of these issues and still no diagnosis and no solution. It is so hard to watch your child injure herself uncontrollably. She repeatedly asks for her blanket to be tucked securely around her so she cannot hit herself. There is something that will help. I just need to find it. So I will continue to pray, research, bug the doctors and test new theories. Eventually, God will lead me in the right direction. I just hope I don't miss it.



  1. I saw a teaser this morning... 20/20 on ABC will have a special tonight on new treatment options for kids with anxiety and OCD behaviors.

    Also, if you think the hitting might be sensory-related and since she likes to be wrapped up tight into a blanket, you can buy compression shirts through OT-type catalogs and websites. This wouldn't restrain her arms, but maybe the pressure on them as well as on her torso could make a difference.

    You have my sympathy on this challenging journey. I know how hard it is trying to figure out the reasons and sometimes even when you do find the reason, there's nothing you can do to help your child or change the situation.

  2. I pray you find some answers too, poor Emery. I can't imagine how exhausted and down you must feel to see your child hurting. God will meet you where you are and give you the strength to get through the day. hugs.