Wednesday, June 25, 2014

Life Happenings

Last week was a very busy week.  Blake went to Theater Camp at our local high school each day last week for 3 hours.  The last day the campers performed a play complete with dancing.  Blake loved the camp and being up on stage.  The kid is a natural born performer!  It was a lot of fun and he has already asked if he can do the camp again next Summer. 

Blake also did a one day basketball camp this past Monday at West Catholic high school.  He enjoyed this camp as well.  He was excited to get a West Catholic t-shirt which he promptly dropped directly in a mud puddle on his way out.  Fortunately the shirt is dark green and should wash up just fine. 

We have definitely established a correlation between Blake eating bread and his mood, focus ability and emotional control.  If we allow him to eat bread more than one time in a two day period, he becomes irritable, mouthy, and has difficulty concentrating.  We discovered this via the Feingold diet.  The most likely ingredient/culprit is calcium propionate, a preservative used in most breads.  For Blake, we use the Feingold approved King's Hawaiian Rolls.  It has made a huge difference for him.  He requires very little discipline and homework time is a much happier setting. 

The girls are enjoying their summer break.  Both of them are doing one day a week of daycare for my sister.  Nicole does volunteer work at our local library.  Ashley handles most of my babysitting needs for the twins when needed.  They are also spending a lot of time with their friends.  We are heading up to the cottage this Friday for a 10-day stay.  Hoping we have nice weather.

After having a few short-lived episodes here and there, Emery is back to herself again.  She is happy, silly and naughty!  She gets into everything, drives her brother crazy and is beginning to be a little defiant.  We are still using 6 minute time-ins as a discipline method, but I think we may need to try something different.  I can only drink so much wine in any given day!

Emery is now leg brace free!  The two broken bones in her leg healed perfectly and she is back to bouncing on the tramp.  She is a happy girl! 

We had a follow up meeting with Emery's Grand Rapids neurologist.  He is still pushing us to put her on Prozac.  Unfortunately, Emery was very distraught during the meeting.  She never would get upset going to a doctor appointment.  But, ever since her two extremely long visits at the ER, she is terrified of hospitals and doctor's offices.  She clings to me relentlessly, whimpers, cries silent tears and attempts to hit herself if her hands are not restrained.  This behavior convinced her neurologist that Prozac was necessary.  He said that a 9 year old child should not be so afraid of a doctor visit.  I told him by that standard, my 14 year old daughter would be on Prozac because she is still afraid of shots!  He also noted that she was not engaging with him.  I said it was because she was upset.  At our first visit with him, she engaged with him quite a bit.  He of course, did not remember this.  I asked what diagnosis he was giving her to warrant prescribing Prozac.  He said because she has an intellectual disability.  My husband said we are aware she has a disability.  I then asked him if all of his patients with intellectual disabilities were on Prozac.  He said well no, of course not.  Then he immediately said he thinks she has an anxiety disorder.  Now this I can very well see as being a definite possibility.  Emery could be hitting herself whenever she is overwhelmed by anxiety.  He also thinks she could have obsessive compulsive disorder, but he does not want to give her that diagnosis until it has been six months since her episodes began (which would be June 30th).  Based on my research, it appears that Prozac is much more successful when combined with cognitive behavioral therapy (CBT) or Applied Behavioral Analysis (ABA).  I asked him about this and he said he would not prescribe any therapy or run any other tests until I put her on Prozac.  He didn't ask any questions about Emery at all and basically ignored me if I offered any insight on her behaviors or personality.  Needless to say, we are definitely seeking a second opinion. 

In the process of him updating his notes on his computer, he said, why don't I see the results of her EEG? I told him that he never ordered or mentioned an EEG.  He said, oh well we better have that completed before beginning the Prozac.  So, he ordered an EEG which was scheduled 4 days later.

We have not received the results of the EEG yet.  We did receive a referral to a neurologist at the Children's Hospital of Michigan.  His name is Dr. Chugani and he comes highly recommended by Emery's therapist and several of her other clients.  Based on my research, he appears to extremely knowledgeable with issues of the brain.  Her appointment is July 14th in Bloomfield Hills.  He may agree with her current neurologist.  But, I will feel more comfortable with a second opinion.  I am still in the process of completely a paper picture of Emery so the new neurologist has a good idea of her issues.  Praying we find out what is causing her issues and what is the best way to deal with them. 


Friday, June 6, 2014

Yet Another Episode

Before Emery even was over her symptoms from the last episode, another one occurred. This time, I can't trace it to a specific illness. Her ears were clear, no swollen lymph nodes, no cough or runny nose.

She woke up a week ago last Tuesday at 3:00 am extremely upset. She always goes to her rocking chair if she wakes up during the night. She was rocking really hard. I thought she was going to rock right out the window. I could not calm her down. She was so distraught. She eventually fell asleep, but woke in the morning back in one of her episodes. Same behaviors as always, hitting her head, hard tics, hair pulling and sobbing relentlessly when she had to get out of her chair. As long as she was in her chair and had her blanket securely tucked around her, she was fine. Happy, content, playing with ipad and blocks, bossing me around, and eating normal as long as I fed her. So very strange. The episode lasted about a week. By the following Tuesday she was getting out of her chair occasionally on her own and by Wednesday she was back to normal. By normal, I mean acting totally like herself but still occasional hitting, tics and hair pulling without being distraught.

I don't even know what to think. I don't understand why she keeps having these severe episodes. Maybe she had a bad dream and her reaction is her way of coping with her feelings. Maybe she was just reacting to the illnesses as opposed to the illnesses causing the behavior. Still processing it all.

She has a follow up appointment with her neurologist next Thursday and we are getting a referral to a neurologist in the Detroit area that specializes in kids with developmental delays. I am in the process of reviewing my blog, notes and emails to her therapist to try to create a timeline of all Emery's not so normal behaviors since she has been home. I need to distinguish between orphanage related behaviors and "other" behaviors. I am hoping the timeline will paint a clearer picture of Emery for the neurologist as well as a refresher for me.

Praying constantly for God to help me help her.