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I came across this blog and thought some parents might like to know that even if we can't erase all the struggles our kids face, they can still blossom and accomplish amazing things. Supporting them and believing in them does mean the world to them, even if we" fail" to provide them with idyllic childhoods. Struggle can sometimes bring important gifts.

 

Guest blog post by Fletcher Wortmann -
I don’t envy anyone whose child is diagnosed with a mental health challenge. You learn that they’re walking a difficult path - without a guide - and one you may not even have recognized that they’re walking. My father told me once that if he could, he would take the suffering I’ve endured because of my OCD and carry it himself, in a heartbeat. I suspect many of parents of mentally ill children can understand that sentiment.

 

But as infuriating and heartbreaking as it must be, no parent cannot carry their child’s burden, any more than my dad could carry mine. In caring for a child with a mental health challenge, your responsibility is the same as any other parent’s: to support your child, to lift them when they stumble, to guide them away from dangerous roads, to help them until they’re ready to strike out on their own, if they can.

 

Those of us with mental health challenges may require more support, more care, more understanding. Taking care of one of us cannot be easy, and you’ll probably make mistakes along the way. But, I promise that you can help your child thrive, as long as you know when to speak up, and when to listen.

 

That said, I understand that “you’re going to screw up, but hopefully you won’t screw up too badly” isn’t the most inspirational message. So if I can have your attention for a moment longer – I’d like to offer you a message of hope.

One thing I’ve realized through writing and therapy is that, through most of my childhood and adolescence, my OCD ran my life. I was miserable, my parents had no idea what was wrong with me, and my therapists weren’t helping. But through those long, unhappy years, my family and I never would have guessed that I’d one day receive effective diagnosis and treatment; that I would successfully graduate from Swarthmore College, publish a book, and pursue opportunities that would eventually give me the opportunity to address you here, today.

 

Did we all have to compromise some of our expectations and goals along the way? Absolutely. In college, I had to drop my plans for an honors degree and scraped by with the absolute minimum number of credits. I’ve had to leave part-time jobs because they couldn’t accommodate my disorder.

 

But my parents never gave up hope. At every step, they’ve been there to support me and encourage me to achieve whatever my "optimal outcome" might be. This is something they’ve taught me not only through their words but by their actions: When I was young and already presenting a bit of a challenge, my mother left a successful career at Hewlett-Packard to raise me and my sister – while doing volunteer work in our community to continue to put her MBA skills to use. And my father left a big Boston law practice to work as a prosecutor for the federal government, helping to make the city safer. My mom and dad taught me: don’t define success according to other people’s standards. Be kind to yourself and be kind to the people you love, and things will work out.

 

No, I'm not going to medical school, I'm not going to a fancy New York or Iowa MFA program. But I am living independently. I’m attending grad school. I have friends. And though these victories may be modest, I’ve built a life for myself, and not a day goes by when I’m not proud of that – and will forever be grateful to my mom and dad for their help.

 

My message to you is, never give up hope, and never stop encouraging your child to accomplish their own “optimal outcome.” It's not going to be easy, and you’ll likely have to make compromises – but with your support and love I know your child can build a life, too.

a089ce26e5badf61db9f3dc8ea8311dd-processCopyright, Fletcher Wortmann, 2013. Author of Triggered: A Memoir of Obsessive-Compulsive Disorder (St. Martin’s Press), named one of Booklist’s “Top 10 Science & Health Books of 2012”.
http://www.fletcherwortmann.com
http://www.psychologytoday.com/blog/triggered

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Sorry you had such a negative response. I find a message that says "hey, parents, it's your support that matters most to me, even if you can't remove all of my challenges" to be a positive one. I didn't post because the author has Pandas. But lots of our kids have OCD, so I felt it was relevant. I don't post on the OCD forum and it's not very active. I felt that parents here may appreciate a message that thanked them for believing in their kids.

 

Ok - so the author had a tough childhood. His message is that from those struggles, he emerged with gifts and looks to a future with promise and optimism. There's a girl in my son's school who's spent her life in a wheelchair. When my son would moan about the unfairness of having Pandas, I'd remind him that there were many people who'd gladly trade places with him. Helen would love to be able to run and climb and swim and not rely on a bag to hold her urine. Yes, Pandas is awful. But it's not the worst thing someone could deal with. When we sat in the lobby of the pediatric oncology wing at Georgetown waiting for pex, it was a real eye opener as to where my child fell along the pity party spectrum. I knew then that my son would eventually conquer his disease. Some of the kids around us wouldn't be so lucky.

 

I disagree about how a couple of IVIGs will restore you to completely normal. But we obviously have different life experiences and outloooks, and you're opinions are as valid as mine. So I apologize if this post upset you. But I found the story of an OCD survivor who thanks his parents to be worth sharing.

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LLM, you do not think that in clear strep only induced PANDAS that IVIG does not restore a child?

It may. But I don't think IVIG "cures" that child from ever having another flare in the future. I think that until the issues the predisposed that child - leaky gut, weak BBB, methylation hurdles, diet, lack of tools to manage anxiety, weak immune system... - are treated, that child can't walk into a future free from worry about another episode. IMHO, IVIG alone is not enough to "cure" Pandas. But again, we are each entitled to our opinions and I didn't post this to start an argument. My hope is that it would offer some encouragement. If it didn't give you that, then ignore the rest of the thread. Clearly you are not in a place where this speaks to you, and that's ok. But please don't suggest that it's an inappropriate message for others who are in a different place or that I shouldn't have posted it.

Edited by LLM
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I am not sure all that was said, but I thank you for posting that. My son has not been helped by IVIG and we are still trying to find what will work for him. It is helpful to me to read things like this because I am not sure Ian will ever be totally free of OCD, even as an adult. So to hear that some manage to push through and build a life is indeed very helpful. And nice to see he realizes all of the help his parents gave him made a difference.

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Thanks for posting LLM. Not sure all that was said in the thread since it was edited, but I find this articulate young man's message very relevant, and I plan to read his book.

Almost all our kids have OCD, weather it's for weeks, months, years, or life, and insights into their world and how to support them as parents is always helpful.

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Laura,

 

You are a gift as a friend made through the mess of PANS. Yet our children benefitted from very different treatment paths. My girl had 9 IVIGs with success; one was enough for you to decline more for your son, thank you very much. You can read, research and desect methylation, co-infections, and DNA markers in circles around the rest of us and I'm like.....please just tell me what to do! You've successfully used ERP/CBT and discovered many helpful books for parents and kids. I loved Enhansa for my girls, you discovered it was a bad mix for your kids. The recovery paths are nowhere near the same, some symptoms have been and we've learned similar symptoms really don't amount to much in determining underlying cause.

 

What has been a consistant bond is the support as moms fighting to find solutions and new avenues to explore until our kids are completely well. And this support and sharing of information has been the foundation of these forums. Because we know the medical community has miserably let us down and those on the outside hastily judge in ignorance.

 

There is no single factor that puts you in or out of our club; this is our double edged sword. Behavioral symptoms resulting from some infection or immune dysfunction is pretty broad, I'd say. I used to get so upset at the insistence of "sudden onset". It was ridiculous to get lost in that sauce. Step-by-step getting our kids or self closer to neurotypical is what works. Ruling things in or out, trial n error. And not losing your mind or hope or sanity or spirit as a parent in the process. You helped me learn and relearn that over these years, Laura.

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I am sitting here crying. That was inspiring. Yes, I think most of us would take the burden of illness and suffer instead.

 

IVIG, PEX, Abx, New Meds & treatments, Supplements, etc. It prob takes a combination of all these, plus a lot of luck (faith if you are OK with that) that helps these kids.

 

May we all be thanked one day...one way or another.

 

T.Anna

DS15

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Thank you Laura-----xxoo

 

Lauren, I don't know what was said here, but I keep getting confused: do you have a child yourself struggling with OCD or not?

Some posts say you do- I understand privacy,

but as a parent,

this article was very poignant.

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I think we all can benefit from reading inspiring stories and learning to live in the moment. There are so many times when I compare my son (unfairly) to other "typical" boys his age that it breaks my heart. But when I look at how far we have come and that he is a loving, helpful, intelligent young man I still feel blessed.

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