First, my apologies for not posting an update earlier. I know many of you have been praying for our time in Maryland and patiently waiting to hear the outcome.
Our trip to Maryland went off without a hitch. It was a great experience and much better than I had ever hoped it could be. Everyone was very kind and compassionate (which has not always been our experience with hospitals). The accommodations there are fabulous, a real kid's paradise. The plane ride there and back was great. And the testing that they did on Mary to see if she qualifies for their study confirmed her diagnosis... well, kind of confirmed her diagnosis. They did agree that she is bipolar, but instead of the severe bipolar 1 diagnosis that she has been given by our p-doc, they said she was a less severe bipolar 2. The reason they believe that she is bipolar 2 instead of bipolar 1 is the level of mania that they have seen documented and described by us. In their opinion, she is hypo-manic instead of full blown manic. I disagree with that part of the diagnosis. She does suffer from hypo-manic episodes and most of her cycling has been more hypo-manic than full blown manic. But, I think that is because we are hyper vigilant in tweaking her medications when we see the mania approaching. We call the doctor if there are more than 2 nights in a row with little or no sleep. We track everything and know what time of month/year to be extra careful. We have her in therapy every week to help her learn what her triggers are and catch it before it becomes full blown mania.
Regardless of that difference in opinion, Mary does qualify for being part of their research study and she would love to participate. The other kids have been invited to participate as well, being siblings of a bipolar child. So... we are headed back up to Maryland the middle of October. We are excited to be part of the study and hope that in the long run it will benefit Mary and others who suffer with this disorder. Unfortunately we won't be getting the testing results as we had originally hoped for. Her data becomes part of a pool of data that is combined to study a collective group of kids. We will still probably need to go ahead and contact the local school system to have a full psych eval done in the near future. But there are so many positives to participating that we are still going to go ahead with it.
I'm so glad things went well! Thank you also for allowing your child to participate in this study, it's families like yours that give families like mine hope of new research, new treatment and better outcomes. Thank you so much!
ReplyDeleteSo glad to hear the study is working out for your family! Hope you're also having a good start to the new school year as well.
ReplyDeleteI have been reading some of your blog posts, Kelly, and I wanted to thank you. I have a brother with bipolar disorder, and have begun struggling with depression and more with intense anxiety myself this year. I was really blessed by some of your thoughts, and I will offer up a prayer for you and your family. God bless & thank you!!
ReplyDeleteThank you for sharing your journey.....I am having my 9 yrl old evaluated on the 19th and found out last year that my husband is bi polar. it is really hard to wrap my mind around as I never even experienced post partumwith my kids. Feel free to check out my blog but only if you preapre yourself fro some sereious depravity. Kinda though God was done with my trials but he has brought me this far so I know he will help me navigate this new path if that is what is behind my sons rage. Thank you again...
ReplyDeleteWww.leaningheavyonjesus.com
Kelly, I'm so glad I came across this post! About a year and a half ago, I also went through the phone interview process to see if my daughter qualified for this study. We "passed" this stage and were scheduled to fly out to Bethesda for the in-person interview. But I mentioned something to our contact about Bug being pretty stable at that time and wondering how they'd be able to evaluate her effectively. Well, after a few more phone calls, they decided we shouldn't come out. In addition to helping researchers learn more about bipolar disorder to help kids suffering from it, like you, I wanted confirmation of my daughter's diagnosis from the experts. She's had two diagnoses of it by respected child psychiatrists in our area, one for bipolar II, the other for bipolar NOS. But I think it would just give me a little more peace of mind to have it confirmed by top researchers in the field. Good luck, and I look forward to reading more about your experiences in the study!
ReplyDeleteHow are things going?
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