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airial95

Four Years - A Reflection

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Year 4 – a look back

 

Every year I have posted a list of reflections, things I have learned through the previous year’s fight and struggles. I have found that each year it has helped me to be able to reflect on how far we have come, as well as to revisit the previous year’s reflections to keep perspective on where we have been.

 

I have found it helpful to even look back at each year's post to see just how far we've come - Our First year: http://latitudes.org/forums/index.php?showtopic=12108&hl=

Second: http://latitudes.org/forums/index.php?showtopic=16245&hl=

Third: http://latitudes.org/forums/index.php?showtopic=19517&hl=

 

And here are my reflections for the 4th year of our journey:

 

  • I have often dreamed of “life after PANDAS”, I learned that there is no such thing. While my children are well on their road to full recovery, our lives have forever been altered by PANDAS, and there will never be a day where PANDAS does not cross our minds, or lips.
  • While knowing that “life after PANDAS” is a fantasy, I learned that I can use the impact PANDAS has made on our family to help others by sharing our story, experiences and support to those who have come after us. Hopefully, they will not take 4 years to find the healing we have this year.
  • I learned that fear may cause us to doubt our best instincts, but the support of kind strangers who have become “virtual” friends over the years, those fears can be conquered.
  • I’ve also learned that the unwavering support and advice of those friends can only carry me so far. I am their mommy, and only I can decide what is best for my children, no matter what anyone else says, even with the best of intentions. Our instincts as parents – no mater how scary - are still the best weapon we have to help our children.
  • I learned that even the most fierce mommy advocate can get it wrong sometimes too – IVIG has been a game changer for my kids, and I regret being too afraid to try it for my son sooner.
  • I learned to never underestimate PANDAS – just when you think you have it “under control” – it pulls the rug out from under you. Again.
  • I learned that as we travel farther down the path to recovery, the setbacks seem greater – even though they are comparatively minor compared to the through which we had previously passed.
  • I learned that even after living with this for 4 years, even those seemingly minor setbacks will still break your heart all over again.
  • I learned that I am not the same person I was 4 years ago when I started this journey. The hopes, dreams and goals I had for myself, and my family, back then are hardly recognizable to me anymore.
  • I’ve learned to embrace the woman I am now, and realize the hopes, dreams and goals I have now, while different, do not represent a failure of what I envisioned for my life, but a growth that comes from naturally giving yourself over to your family, and God, in ways those who don’t face challenges may never understand.

 

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Ariel95 -- beautiful. Put a lump in my throat.

 

My journey has not been nearly as long as yours (though it has been too long), but i the part you wrote about the setbacks really speaks to me. Although my son seems to be past a couple of really aweful symptoms, every time he displays something that resembles those worst-of-the-worst rages. a panic sets in that that they are returning and we have to fight that battle AGAIN.

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Thank you so much for sharing! Frequently, I have thought of posting something similar but could not find the right words. You have found the right words.

 

This condition has taught us to have more empathy and love for those around us. So, as usual, something beautiful as arisen out of something that horrified us at the beginning and keeps us going during any relapses.

 

Big cyber hug to you!

Edited by juliafaith

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Thanks,

 

I wrote the first one just for me and shared it with a few close friends. They were the ones that encouraged me to share it, and I've been doing it ever since. Every year presents a different set of challenges, and I think we forget sometimes that everyone is at a different stage in this journey, but ultimately, we are all experiencing similar struggles and emotions. I have always found that it helps me to look back and see how far we have come!

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Not ready to accept this new reality I'm afraid. 4 years in April with Lyme, Bart, babs and myco diagnosis. The hardest part is having one son living a normal life as an engineering student at a great college and another one floundering with med and psych issues. This week that child, 18, filed for disability. Need to get to a happier place soon. Nothing has prepared me for nearly daily suicidal conversations. Read that that can be a obsession of PANS. Wish he had tics instead.

I do reflect and know that this path we are going down has changed me also. Thanks for sharing your post. Crying in front of my iPad again. And yes, thanks to virtual friends. Would be lost without Lyme mothers.

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Tears in my eyes too. Prayers to God every night to find a cure!

 

When we were at the RI conference, Dr. Swedo said in her presentation, "Your children will outgrow this." I spotted her leaving on Sunday afternoon, and thought - I have got to ask her about this. I couldn't believe no one else had during the Q & A's. What could be more pressing? I asked her, and she simply and sweetly responded, "They will." I then pressed on, "When?" She said, "by their early 20's." She was completely unwavering and confident in her answer. She was literally heading out the door, so I didn't feel comfortable asking her for more specifics. Hopefully, she will elaborate more on this at some point.

 

My interpretation is that you cannot do nothing and merely expect it to go away. We need to use all of the tools/treatments available. My main concern is about minimizing any collateral damage. However, the brain does have a tremendous ability to repair itself.

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You have a wonderful attitude! I'm sorry it has been so long. I agree that so much good can come out of an awful experience including connecting with the wonderful Moms on this forum who are moving heaven and earth to heal their kids. During the two plus years of lyme treatment it seemed like more of a nightmare than a blessing but now that we are well I definitely look at it as a blessing in many ways because of the people we met who healed us and the things we learned.

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Thank you for sharing this. We are only four months into our journey. Every time I read about recovery, it gives me hope. Every time I read about setbacks, it gives me more understanding and experience.

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Tears in my eyes too. Prayers to God every night to find a cure!

 

When we were at the RI conference, Dr. Swedo said in her presentation, "Your children will outgrow this." I spotted her leaving on Sunday afternoon, and thought - I have got to ask her about this. I couldn't believe no one else had during the Q & A's. What could be more pressing? I asked her, and she simply and sweetly responded, "They will." I then pressed on, "When?" She said, "by their early 20's." She was completely unwavering and confident in her answer. She was literally heading out the door, so I didn't feel comfortable asking her for more specifics. Hopefully, she will elaborate more on this at some point.

 

My interpretation is that you cannot do nothing and merely expect it to go away. We need to use all of the tools/treatments available. My main concern is about minimizing any collateral damage. However, the brain does have a tremendous ability to repair itself.

THANK YOU for posting this!!! I think this is worth posting as a topic theme--Wow--What blessed reassurance and encouragement !!! Thank you Dr. Swedo and thank you Maryaw!!!!

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I wholeheartedly believe they will outgrow it, like Swedo said. But the question is - what are the lasting effects? I had strep triggered PANDAS as a child growing up in the 70's 80's, complete with the well documented chronic strep history and all. Dr. Murphy and Bouboulis both confirmed that I had it as a child. (No Lyme - negative Igenix, like my son). While I outgrew the improper immune response (I no longer have any sort of neurological/psych issues related to any illness), I do have clinical OCD as an adult. I firmly believe that the OCD is a direct result of the untreated PANDAS growing up. I had chronic strep, and my sister turned out to be a carrier, but my infections were always treated (in hospital with IV abx on more than one occasion) - but other that the typical course of abx to treat the current/ongoing infection - there were no other supports in place for me. I truly feel that had I had other supports/treatments I may not have OCD today. It's one of the reasons I do CBT for my kids - if I can give them the coping skills as children, maybe they won't have the lasting effects I have seen.

 

On a side note - while knowing what I know now, both my mother and I can clearly see all of the PANDAS related challenges I faced, however, I would not describe my childhood as anything other than happy. I don't feel like I had any more/less drama that the typical pre-teen/teen girl growing up, even though looking back I see where I should have had it more difficult. I'm now a happy, successful, productive woman, wife and mother of 2 - so there is hope for all of our children.

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I understand what you are saying--I also had constant strep growing up--both my sister and I did, and I carry the effects as well into adulthood. I have also sought out the cbt supports for our kids--same reason.

 

My hope and prayer is that they will be stronger as a result of this experience.

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