It's been a long 6 months. I've started writing quite a few times over the last couple of months and then I would just hit the delete button and go to bed. Sometimes it's hard enough just living it... writing about it is sometimes too overwhelming for me. And sometimes I just don't know what to say. Well, I still don't know what to say, but here I am anyway... Hey that rhymed. :)
I had to reread my last post just to see where I left off, where we were... And what I can say for certain is that we were there then and we are here now. And everyday in between has been a day that got us to this day. Everyday I learn. Everyday I am elated. Everyday I am frustrated. Everyday I am thankful for everyday. Because everyday is a gift.
I've been posting a little bit more on my facebook page lately. I've wanted to celebrate. I've wanted to share. And tonight... I thought I would tell you a little bit more about the last 6 months and some of the things Vicki and our whole family has been through and learned to get from there to here. And, quite frankly, the last 6 months have been overwhelming and sometimes writing for me helps me to sort stuff out too and really take a step back... see the challenges and the changes and the progress. And it makes me appreciate every day and every struggle and every victory even more.
Those that know me well, know that I like answers. I like to know 'why'. I don't like questions. Day 26. Year 2. That was the post where I wrote all about the onset of Vicki's new symptoms and behaviors. That was back in April. So many questions. So much confusion. Such drastic changes. As I reread a few of my posts from those days just now, I am sitting here with tears streaming down my face. Tears because I don't want to remember those days. Tears because I was so heartbroken. Tears because Vicki was not Vicki. And I didn't know why. All I had were questions. And the tears are flowing because I don't want to forget those days either. Tears because Vicki has come so far. Tears because I am so proud of her. And tears because, well, because I am a cry baby at heart. Do I have answers now? Do I know why? Yes and No. Will I ever fully understand what happened to Vicki? Probably not. Am I afraid that one day we will wake up and be there again? Absolutely. I am terrified. But I also know that if it happens again, we can make it. Vicki is strong. I am strong. My husband is strong. Joey is strong. Ally is strong. And our support system is strong. Amazingly strong. (Thank you!!!!! xoxoxoxoxoxo)
A little disclaimer here... the rest of this post may be very dry, or maybe it already is... and I am just wet because of my tears. Ha ha. I want you to know and I want to remember some of the things we have done to get from there to here. And I forget that all of you may not have read my recent facebook posts... Let me tell you quickly where 'here' is and this is based solely on my opinion. If I had to assess a percentage to the question, "Is Vicki back to baseline?" (And this would be Vicki's
pre-April baseline....) I would have to say that, on average, because Vicki is still very unpredictable, Vicki is about 85% back to Vicki. And I am ecstatic about that!! The biggest symptom that still persists is her OCD, although nowhere near as severe as it was, it still has a firm grip on Vicki and on me. Tonight I don't want to talk about behaviors. Tonight I just want to tell you about doctors and diagnoses and ongoing treatment. (I plan to post again soon to talk in more detail about behavior.)
Here is a list of the doctors that Vicki has seen since the onset of her new symptoms this past April:
Pediatric Neurologist.
Developmental Pediatrician.
Pediatric Neurologist follow-up.
Pediatric Ophthalmologist.
Pediatric Neurosurgeon.
Geneticist.
Developmental Pediatrician follow-up.
Pediatric Endocrinologist.
Pediatric Neurologist follow-up.
Pediatric Neurologist specializing in PANDAS.
Developmental Pediatrician follow-up.
Pediatric Neurologist specializing in PANDAS follow-up.
Neurodevelopmental Disabilities Evaluation.
And we still have 3 follow-ups and a new doctor yet to see to finish out this year.
It has not been a super fun process for Vicki, for myself and my husband, or for our 2 other children, Joey and Ally. Would we do it all again if we had to? In a heartbeat.
What else have we done?
2 day hospitalization. :(
Lots and lots of blood draws. :(
24 hour video monitored EEG
Sedated MRI
LDA shots
And lots more stuff....that I am too tired to list here at this moment.
So, why? Why such significant changes in our Vicki? In my non-doctor, mom's intuition kind of thinking.. .I think it was a "perfect storm" of many things clashing in Vicki's body at the same time. To try to separate it all out was something that no one single doctor or specialist could do. Was it neurological? Was it behavioral? Was it hormonal? Was it developmental?
I like answers. And I like things to make sense. And doctor after doctor after doctor we saw. And lots of things were ruled out. But nothing was ruled in. I would sigh in relief when a test came back normal and then turn around and cry because I wanted to find something. Eventually we did find something and I feel it has made all of the difference.
I don't know how many of you have heard the word PANDAS before? And not the cute big ol' bamboo eating bears kind... But the "Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infection" kind. I had vaguely heard this term being thrown around in discussion boards and sites related to autism. But I didn't know what it was. And I still really don't know what it is. But what I do know is that once Vicki had the diagnosis of PANDAS (of which Vicki had 7 out of 7 of the symptoms that are used to describe this disorder) and started receiving treatment, Vicki started to slowly come back to us. The more I read about PANDAS and the more I googled it, the more amazed I was.... when I read some of the symptoms, it was as if they had taken notes from my post on Day 26. Year 2. I didn't know what I was describing, all I knew is that Vicki was not Vicki and it broke my heart. And I found myself nodding in agreement with what was being written in some of the case studies I read.
Vicki is currently being treated for PANDAS. We've gone through an initial 10-day course of an antibiotic. She is on a daily dose of ibuprofen. She was then treated with a 5-day course of steroids and was put on a 3 x a day antibiotic. She's been on this antibiotic 3 x a day since the middle of July. Vicki will continue to be on this antibiotic 3 x a day at least through the end of this year. She also went through a month long steroid treatment and is on other medications not related to her PANDAS treatment as well.
So, there you have it in a nutshell. Or in a bamboo forest. The last 6 months. I have a lot more that I want to say about what Vicki and our whole family went through and continue to go through. But not tonight. I really just want to make sure I post this one tonight. And I'm not used to writing this late at night anymore. :) I don't think I am making any sense.
Just as an aside, I googled 'giant panda' as I was writing this post tonight. And I found this statement to be very interesting. The Giant Panda is a "highly specialized" animal with "unique adaptations" and is generally solitary. Hmmm.... I wonder if it was a coincidence that this disorder was named PANDAS and that a significant number of children who have autism develop PANDAS? Interesting.
Stay tuned for more PANDAS talk, more interesting things we found out the past 6 months, and lots and lots more of our happy, smiling, skipping, amazing Vicki.
