Thursday, April 17, 2014

Family Update

Emery being back to herself was short-lived. She came down with a bad cold April 3rd and her OCD symptoms resumed. Hitting herself hard and major pulling out of hair. And yes, of course this began the day before we were leaving for vacation. Took her to the doctor to check for strep the day of our departure. Negative strep test and no ear infection. We were told it was viral, but the OCD symptoms continued.

My family has never went on Spring Break vacation due to my husband working in the tax industry. The same is true for my sister. So this year, my sister and I decided to take the kids and head to Florida over Spring Break. It was a hard decisions for financial reasons. My wonderful sister decided to pay for the house rental for all of us so we were able to go. We stayed in a large house in a gated community in Destin, Florida. My sister, me and 7 kids! Her two, my four, and a friend of my girls.

Despite Emery's hitting and hair pulling, she had a great time. She was in a happy mood, enjoyed swimming daily and loved the ocean waves. She also loved going on a bungee trampoline and hanging out with all the kids. She had an extremely runny nose the entire time and was a bit clingy, but overall she really enjoyed herself.

We all had a great time. It was nice to break away from the daily routine and enjoy some sunshine and warm weather. I actually read two books for fun. Normally I only read about PANDAS, OCD, developmental delays and apraxia.

Since being home, Emery has become extremely clingy to me. The hitting and hair pulling continue. She has a large bald spot on the side of her head. Her nose is still runny. She was diagnosed with a toenail infection. The list seems to go on and on. By the end of the day I am drained of energy, sanity, and hope. Fortunately, after a good nights sleep, I am ready to take on the daily challenges again.

Emery had an appointment with a neurologist the week before vacation. He ordered a lot of bloodwork, MRI of her brain (scheduled for May 7th), a sacral ultrasound (more on that later), and recommended we start her on an extremely low dose of Prozac to see if it helps the hitting and hair pulling. I stated I was concerned about trying any SSRIs due potential severe reactions in PANDAS patients. He basically doesn't appear to believe PANDAS exists, but assured me that the dose should not result in any severe reactions. Other than his polite dismissal of PANDAS, he seems to be a very knowledgeable and caring doctor.

Based on hours of research, we decided to hold off on the Prozac and continue trying NAC (natural supplement to treat OCD recommended by Emery's therapist). We have two more dose increases on the NAC to see if we see any lessening of the hair pulling and hitting. Praying hard that this works, but I have my doubts.

So many issues. So many things to consider. It really makes me feel lost. It is horrible to see Emery suffering and not know the reason and not know what steps to take to help her. I am a person that prefers to have a set plan and scheduled steps to resolve issues. Emery, however, is a mystery. I pray daily for God to lead me in the right direction so I can find the help she needs. She has suffered enough in her short life.

Blake and Emery both began gymnastics awhile back. They both love it but Emery does not follow directions well. No surprise there. She probably will not finish out her last two weeks due to the return of her OCD symptoms. Blake starts soccer tonight and will have a couple weeks of overlapping sports. He is super excited to start soccer.

No Spring sports this year for the girls. A little sad, but nice to focus on activities for the twins.

A lot going on the next few weeks. Easter, 1st Communion for Blake and my niece, Adoption Day celebration, my birthday, Conner and Avery's birthday, 8th grade graduation for Ashley, and a few other things. Always a busy time of year. Looking forward to Summer break.

Weekly Dose of Amusement: Blake informs us last night at dinner that he needed a tissue during lunch at school. He then says he kept trying to sniff but it just wouldn't stay up there. The girls thanked him for his excessively disgusting explanation!



1 comment:

  1. There's a yahoo group for gluten-free, casein-free diet. This group is very knowledgeable about all kinds of symptoms in kids from autism to OCD to PANDAS and has tons of experience treating with natural and alternative methods. You could consider joining this group to see if they have any advice for you. I know sometimes there comes a point where you are willing to try just about anything.