Friday, July 1, 2011

On the diagnosis path again


For the past several months, we've been dealing with behavioral issues on top of Peter's cystic fibrosis -- defiance, extreme distractibility, difficulty making transitions between activities, and lashing out in anger. Peter's always been a high energy child, but this past year, things have reached a point where we suspect Peter may suffer from some neurological or behavioral disorder. Although not directly related to CF, Peter's behavior problems may be exacerbated by the treatments (which he doesn't always like doing) and possibly a side effect of the medication he takes.

At our CF clinic three months ago, Peter broke into a full-blown rage in front of his doctors. Yeah, nice. So, we've been on the diagnosis path again -- trying to rule out possible causes of Peter's behavior. His GI doctor took him off of Reglan and lowered his dose of Periactin to see if it helped. Three months later -- his behavior hasn't really improved and he's lost weight, so back up on the Periactin (it helps increase appetite).Our ENT had mentioned how large Peter's tonsils were, so we wondered if that might be affecting his sleep, and therefore, his behavior. So, our pulmonologist ordered a sleep study. The sleep study found that he had mild obstructive sleep apnea, but nothing requiring intervention. 

My next task was finding a child psychologist, but couldn't find anyone that the pediatrician, the CF social worker, or my therapist had recommended and who accepted our insurance. So, I finally went with a psychology practice from our insurance network. We had an initial consultation, and he's scheduled for a three-hour test/evaluation at the beginning of August. (That was the earliest date that worked with our schedule.) My hope is to have a treatment plan/behavioral interventions in place before Peter starts Georgia PreK in the fall. Yikes! That is coming up fast.

Raising Your Spirited Child Rev Ed: A Guide for Parents Whose Child Is More Intense, Sensitive, Perceptive, Persistent, and EnergeticMeanwhile, I'm also trying to educate myself about how to best handle things with Peter. I've been working with my mom, the director of a child development resource center, who has great suggestions for handling him. I've also been doing a lot of reading on the subject. I really enjoyed Raising Your Spirited Child. It put such a positive spin on the challenges of raising a more energetic/intense child, but it didn't go far enough in explaining how to correct behavior. I'm in the middle of another book a friend recommended, The Kazdin Method for Parenting the Defiant Child. It's research-based and uses good behavioral practices, but it's also going to take time and energy to implement. And that's when I'm done reading the book.

The Kazdin Method for Parenting the Defiant Child: With No Pills, No Therapy, No Contest of Wills
As if one person with a chronic disease wasn't enough, we are also dealing with with my husband's clinical depression. (I'm reading a book on that as well.) So life is a bit more complicated than usual.

I've stopped many of the volunteer and social activities I was previously involved in, as well as slowed down on my photography work. My family (and my own well-being to deal with these chronic illnesses) remains my biggest priority. So I've really focused on taking care of myself, exercising, eating right, and reaching out for education and support for those I love. It's a lot like my life was when Peter was first diagnosed with CF -- all of our morning and evening time devoted to treatments, practice, and learning while trying to cram in daily household maintenance and summer activities in between. I'm hoping that by the fall, we'll get back into a more regular routine and have some answers to our psychological concerns. 

6 comments:

  1. Praying for you sweet Mama! You are so strong and such an amazing mother. You will get through this!! Love ya girl! Mandy

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  2. Thank you Mandy. It's been tough lately, but I'm pretty resilient. I just feel like we're back to square one again and we have a lot of work to do.

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  3. You've always impressed me with your strength and resilience as long as I have known you. Family issues, especially with immediate family, can be tougher than just about anything, especially when it's medical that affects mood or behavior. I'm hoping you can find some good answers and solutions. Wishing you the best of luck and help from heaven for all this. Love ya!

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  4. I'm so sorry Marchet. You are such a strong woman and an incredible mother. I'm always amazed at your ability to face things head on. We'll be praying for you guys. (hugs) -Deborah

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  5. Desiree -- Thank you for your encouragement. You would think one little boy wouldn't be all that tough to handle, but I guess the Lord knew he would be a lot so gave him to me first before I had anymore :) Hope you and your boys are doing well.

    Deborah -- Thank you for that encouraging remark. Yes, I think that facing things head on is my way. We all have our struggles, though. And I'm encouraged by the fact that as much of a trial this is, we are being proactive about it and there will eventually be some answers.

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  6. Marchet - I just love you. You retain your eternal perspective even when it is hard to see thru the day.

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